# A Chronic Voice » A Chronic Illness Blog with Patient Resources
> A chronic illness blog that aims to share personal patient experiences and pain management tips, combined with health resources backed by the latest research.
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## Pages
### About
URL: https://achronicvoice.com/about/
Last updated: 2026-03-28T14:36:44.000Z
## About “A Chronic Voice” & Its Aim
Hello, my name is Sheryl and welcome to my blog, “A Chronic Voice”. I come from the hot and humid island of Singapore, but spent my childhood in Hong Kong. I live with multiple chronic illnesses and autoimmune disorders, primarily:
- [Antiphospholipid Syndrome](https://achronicvoice.com/antiphospholipid-syndrome-diagnosis-a-to-z-guide/)
- [Lupus (SLE)](https://achronicvoice.com/rock-bottom/)
- [Sjögren’s disease](https://achronicvoice.com/chronic-pain-bearable-not/)
- [Epilepsy](https://achronicvoice.com/tonic-clonic-seizure/)
- [Paroxysmal supraventricular tachycardia (PSVT)](https://achronicvoice.com/heart-rhythm-disorder/)
- [A repaired mitral heart valve](https://achronicvoice.com/death-broken-heart/)
- [Clinical depression & anxiety](https://achronicvoice.com/depression-diagnosed-late/)
- [Spontaneous bilateral patellar tendon rupture & repair](https://achronicvoice.com/suddenly-disabled/)
- [Oesophageal diverticulum](https://achronicvoice.com/rare-disease-esophageal-diverticulum/)
- Mitral valve stenosis
My aim with 'A Chronic Voice' through this blog and various channels is to raise awareness about lifelong illnesses from various perspectives. Every patient, illness and how they experience pain is different. There is no single technique or approach to managing these symptoms, but every tool in the toolbox helps. I also want to encourage empathy amongst all facets of society and not just within healthcare. Here's one of my favourite excerpts by [Luca Turin](https://substack.com/@lucaturin) which sums it up:
> “Metaphor is the currency of knowledge. I have spent my life learning incredible amounts of disparate, disconnected, obscure, useless pieces of knowledge, and they have turned out to be, almost all of them, extremely useful. Why. Because there is no such thing as disconnected facts. There is only complex structure. And both to explain complex structure to others and, perhaps more important – this is forgotten, usually – to understand them oneself, one needs better metaphors.”
> [ View this post on Instagram ](https://www.instagram.com/p/CX5ouHNPztm/?utm%5Fsource=ig%5Fembed&utm%5Fcampaign=loading)
>
> [A post shared by Sheryl Chan (@achronicvoice)](https://www.instagram.com/p/CX5ouHNPztm/?utm%5Fsource=ig%5Fembed&utm%5Fcampaign=loading)
**Where Else You Can Find Me on the Internet:**
- [Sick Lessons Podcast](https://sicklessons.com/)
- [Work Portfolio](https://work.achronicvoice.com/)
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice*. Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog.* [***Read our Privacy Policy page***](https://achronicvoice.com/privacy-policy/) *for more information. Thank you!*
[Subscribe for More](#/portal/)
Pin to Your Chronic Illness, Disability & Blogger Boards:
---
### For Caregivers
It isn’t always easy to articulate chronic illness, because we look fine on the outside for the most part. I would like to open a window into our thoughts, so that light may flow both ways. There are many unsung caregivers in the background who try their best to be supportive. Yet you may still feel inadequate, and struggle to understand what it is that your loved ones really need. It is my hope that you gain some useful insight, through the details of our collective experiences here.
A Selection of Articles on “A Chronic Voice” for Caregivers:
- [What’s it Like to be a Caregiver for a Chronically Ill Loved One (The Challenges & Rewards)](https://achronicvoice.com/caregiver-chronically-ill-loved-one/)
- [3 Important Holiday Checklists for Those with Chronic Illness (and Their Supporters)](https://achronicvoice.com/holiday-checklists-chronic-illness/)
- [The Art of Supporting: Sometimes That Means Letting Go](https://achronicvoice.com/supporting-sometimes-letting-go/)
Pin to Your Caregiving & Chronic Illness Boards:
---
### For Medical Researchers & Doctors
It is the hope of I and many others that doctors will listen to their patients beyond the physical symptoms. Chronic illnesses tend to span across various medical departments. This makes the patient-doctor and even doctor-doctor collaboration crucial. Collective knowledge is power, and I hope that some of the experiential data here will be useful in the search for solutions.
A Selection of Articles on "A Chronic Voice" for Medical Researchers & Doctors:
- [My Personal Experiences with Epiphrenic Esophageal Diverticulum (Plus Tips to Help Cope)](https://achronicvoice.com/epiphrenic-esophageal-diverticulum-personal-experiences-tips/)
- [My Recovery Time for Simultaneous Bilateral Patellar Tendon Rupture (With Lupus & Steroid Treatment)](https://achronicvoice.com/recovery-time-for-simultaneous-bilateral-patellar-tendon-rupture/)
- [What it Feels Like to be Refused Treatment by a Hospital’s A&E](https://achronicvoice.com/refused-treatment-hospital/)
- [An Experience from Hell: Thromboembolism From Antiphospholipid Syndrome](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)
- [12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?)](https://achronicvoice.com/visible-evidence-invisible-illness/)
- [33 Things That Stop People with Chronic Illness From Leaving the House (Sans COVID-19)](https://achronicvoice.com/things-stop-people-chronic-illness-leaving-house/)
Pin to Your Healthcare & Patient Care Boards:
---
### For Myself
I find writing in itself cathartic. It forces me to pay attention, to be mindful. It also forces me to reveal my ‘weaknesses’, which is something I detest. But I want to learn how to be comfortable saying ‘I need help’, because at the end of the day, we all do. And to be truly well in every sense of the word, I have to stop denying myself of what I need.
A Selection of Articles on “A Chronic Voice” for You:
- [Call Me Sick Girl (Or How to Make Your Weakness Your Strength)](https://achronicvoice.com/sick-girl-make-weakness-strength/)
- [Loss of Identity with Chronic Illness & The Plot Twist: Sharpened Self-Worth](https://achronicvoice.com/loss-of-identity-chronic-illness/)
- [I Have No Purpose in Life, and Therein Lies My Life Purpose](https://achronicvoice.com/i-have-no-purpose-in-life/)
- [There’s No One Way to Live Your Life](https://achronicvoice.com/no-one-way-live-your-life/)
- [Tell Me You’re Chronically Ill Without Telling Me You’re Chronically Ill (Chronic Illness Memes)](https://achronicvoice.com/chronic-illness-memes/)
- [Chronic Illness Quotes to Inspire, Motivate, Grieve, Hope & Laugh About](https://achronicvoice.com/chronic-illness-quotes/)
- [A Quarterly Reflection: 12 Important Life Lessons I’ve Learned](https://achronicvoice.com/quarterly-reflection-life-lessons-learned/)
Featured Interviews:
- [‘Uninvisible Pod’ Podcast](https://uninvisiblepod.com/episodes/episode-80-aps-lupus-mental-health-sheryl-chan/)
- [‘This is Not What I Ordered’ Podcast](https://laurenselfridge.com/listen/47)
- [Collin's IBD Chronicles](https://collinscrohns.wordpress.com/2019/07/22/breaking-stigma-an-interview-with-sheryl-chan/)
Pin to Your Chronic Illness & Disability Boards:
---
### For Those with Chronic Illness and/or Disability
Finally, I want to let the many others who are suffering out there know that they are not alone. I hope that you take comfort through this solidarity, and find the strength to be human once more.
**It is not that easy to die.** (This sentence is an unspoken code for those who have suffered greatly - you know what I mean :) )
A Selection of Articles & Resources on “A Chronic Voice” for You:
- [Today is Not a Good Day to Make Decisions (and That’s Okay)](https://achronicvoice.com/today-is-not-a-good-day/)
- [How to Use the 7 Dimensions of Wellness to Thrive with Chronic Pain](https://achronicvoice.com/dimensions-of-wellness-thrive-chronic-pain/)
- [Man’s Search for Meaning by Viktor Frankl: 16 Takeaways with Chronic Illness](https://achronicvoice.com/mans-search-for-meaning-chronic-illness/)
- [40 People Share Their Best Pain Management Tips (What to Do if an Unforeseen Flare Up Hits)](https://achronicvoice.com/pain-management-tips-pain-flare/)
- [“It’s in My Blood”: Featuring People with Illnesses, Passions & Talents](https://achronicvoice.com/its-in-my-blood-people-illnesses-talents/)
- [My Diary Entries (Previously: Blog Posts Written for Community Linkups)](https://achronicvoice.com/diary-entries/)
Pin to Your Chronic Illness & Disability Boards:
---
## Thank You & Come be a Part of the Chronic Illness Community
Thank you for taking the time to be here. If you have any questions or topics you would like to discuss, feel free to let me know in the comments below. Don't forget to sign up for our mailing list below to stay in touch. You will also receive a beautiful illustrated e-book along with it!
I am also active on social media, where I share more stories, and interact with those who live with other chronic illness and disabilities. You can connect with me on: [**Twitter**](https://twitter.com/AChVoice)**,** [**BlueSky**](https://bsky.app/profile/achronicvoice.com)**,** [**Instagram**](https://www.instagram.com/achronicvoice/)**,** [**Facebook**](https://facebook.com/achronicvoice) **&** [**Pinterest**](https://www.pinterest.com/achronicvoice/boards/).
**Get in touch if you'd like to:**
[Work with Me](https://work.achronicvoice.com/) [Contribute to the Site](https://achronicvoice.com/contribute/)
You can also [**support my writing and website here**](https://www.buymeacoffee.com/achronicvoice). It costs at least $100 to keep the blog running, and to do some basic advocacy work with some measure of efficiency. Every cup of coffee helps to keep me going - thank you so much! 🙂
## Sign Up for My Free Newsletter
Be the first to get the latest post updates in your inbox, and unlock the comments section. You will also receive an e-book full of uplifting messages, quotes and illustrations as a token of appreciation!
[Browse more membership plans here](#/portal/), or [make a one-off donation](https://achronicvoice.com/#/portal/support) instead.
Sign Up
Email sent! Check your inbox to complete your signup.
No spam. Unsubscribe anytime.
### Work with Me
URL: https://achronicvoice.com/work-with-me/
Last updated: 2026-08-10T05:29:02.000Z
## What I Do & Why
I have been running “A Chronic Voice” since 2015, with approximately 45,000 followers across five social media platforms to date ([Facebook](https://www.facebook.com/achronicvoice), [Instagram](https://www.instagram.com/achronicvoice/), [Twitter/X](https://x.com/AChVoice), [BlueSky](https://bsky.app/profile/achronicvoice.com), and [Pinterest](https://www.pinterest.com/achronicvoice/blog-posts-on-a-chronic-voice/)). My primary audiences are people with chronic illness, disability and mental health conditions. They are mostly looking for support, information, tips, and resources on how to manage chronic pain, and improve their quality of life.
Apart from that, I work on providing educational material to the general public that are backed by facts and research, from a patient's perspective. I also strive to humanise and articulate invisible pain experiences, which are often misunderstood in a society that runs on culturally ingrained ideas of productivity. I want to close the gap between the sick and healthy, doctor and layperson alike. We are all human, and we need to work together if we want a better society to live in.
[Contact Me](#work-form)
## Services I Offer
### Sponsored Posts & Reviews
SEO-optimised educational articles, or reviews of your product, service, app, etc, published to this blog. DA (Domain Authority) is 35, which is above average for the chronic illness niche. View the full list of my published works at the end of the post.
Sample Posts & Reviews:
- [MediSearch Review: A Medical AI Search Engine for Patients, Clinicians & Medical Writers](https://achronicvoice.com/medisearch-review-medical-ai-search-engine/)
- [YuYu Bottle Review: Hot Water Bottle for ‘Surround Warmth’ Pain Relief](https://achronicvoice.com/yuyu-bottle-review/)
- [Drink Pure Wine Review (A Product That Excites Me as a Person with Chronic Illness)](https://achronicvoice.com/drink-pure-wine-review/)
- [Oral Spray Vitamins: A Quick & Easy Way to Get Your Nutrients with Chronic Illness](https://achronicvoice.com/oral-spray-vitamins/)
- [How to Use the 7 Dimensions of Wellness to Thrive with Chronic Pain](https://achronicvoice.com/dimensions-of-wellness-thrive-chronic-pain/)
### Research-based Copywriting
In-depth coverage of a specific topic with research and citations from established medical sources or scientific journals. It may be published on this blog, or on your own website(s).
Sample Articles:
- [Antiphospholipid Syndrome Diagnosis: The A to Z Guide as a Patient](https://achronicvoice.com/antiphospholipid-syndrome-diagnosis-a-to-z-guide/) (Personal Research Project)
- [GABA for Sleep & Supplements that Work Best Together with It](https://spectraspray.com/blogs/news/multivitamins-for-kids-what-they-can-and-cannot-support) (Spectra Spray)
- [Multivitamins for Kids — What They Can and Cannot Support](https://spectraspray.com/blogs/news/multivitamins-for-kids-what-they-can-and-cannot-support) (Spectra Spray)
- [TMJ Disorder Treatment in Singapore](https://nourishdentalcare.com/) (Nourish Dental Sleep & TMJ Care)
- [Trigeminal Neuralgia: The Great Toothache Mimicry (Case Study #5)](https://nourishdentalcare.com/trigeminal-neuralgia-toothache/) (Nourish Dental Sleep & TMJ Care)
### Speaking Engagements
- Werfen — [Webinar: Shared Journeys in Hemostasis: Connecting Patient Voices with Hot Topics in the Hemostasis Laboratory](https://www.werfen.com/na/en/webinar-shared-journeys-hemostasis-connecting-patient-voices-hot-topics-hemostasis-laboratory)
- Not What I Ordered Podcast — [Episode 47: Acceptance Is Power with Sheryl Chan](https://laurenselfridge.com/listen/47)
### Chronic Illness Bloggers’ Network Recruitment
Finding the most suitable bloggers for niche chronic illness/disability/health topics through the [Chronic Illness Bloggers](https://chronicillnessbloggers.com/businesses/) network. Our bloggers have a combined reach of 4 million patients, and we have experience working with a wide variety of brands.
### Web Development Services
I am originally a web developer by trade with a background in design, and offer full-suite web services for new and existing websites. I work best with small to mid-sized businesses that need a new website, coupled with copywriting services, e-commerce functionality, SEO optimisation, and/or niche integrations. View my work site, [Black & Web LLP](https://blackandweb.com/), and [LinkedIn profile](https://www.linkedin.com/in/sherylchan/) for more information.
#### Browse Portfolio:
- [Nourish Dental Sleep & TMJ Care](https://nourishdentalcare.com/)
- WordPress site build
- Copywriting for all pages, posts, and case studies
- On-page, local, and AI SEO optimisation
- [Innovez Engineering](https://www.innovezengineering.com/)
- WebFlow site build
- Product listings
- Copywriting for all pages (client collaboration)
- On-page, local, and AI SEO optimisation
- [Content Collective](https://contentcollective.com.sg/)
- WordPress site build
- Copywriting for all pages
- [HGT Consultancy](https://hgtconsultancy.com/)
- WordPress site build
- Copywriting for all pages
- [Sick Lessons](https://sicklessons.com/)
- WordPress site build — our sister site featuring podcast interviews
[Contact Me](#work-form)
---
## My Published Writing Works
A reference list of my writing works, published on this blog, and also to various media outlets, and clients' websites.
### Published on This Blog
- [MediSearch Review: A Medical AI Search Engine for Patients, Clinicians & Medical Writers](https://www.achronicvoice.com/2024/12/05/medisearch-review-medical-ai-search-engine/)
- [How to Use the 7 Dimensions of Wellness to Thrive with Chronic Pain](https://www.achronicvoice.com/2021/05/24/dimensions-of-wellness/)
- [Oral Spray Vitamins: A Quick & Easy Way to Get Your Nutrients with Chronic Illness](https://www.achronicvoice.com/2021/03/18/oral-spray-vitamins/)
- [The Causes & Dangers of Malabsorption & An Easy Way to Get Your Nutrients](https://www.achronicvoice.com/2021/05/02/malabsorption-nutrients/)
- [The Extra Costs of Living with a Chronic Illness or Disability (That the News Often Don’t Reflect)](https://www.achronicvoice.com/2020/02/05/costs-chronic-illness-disability/)
- [How to Maximise Accessibility & Improve Your Quality of Life at Home](https://www.achronicvoice.com/2020/01/20/accessibility-home/)
- [How to Rewire Your Brain to Manage Chronic Pain (& Resources to Help)](https://www.achronicvoice.com/2019/07/30/brain-chronic-pain/)
- [Useful Home Resources I Never Knew Existed (and Learned About from Other Chronic Illness Blogs)](https://www.achronicvoice.com/2019/04/21/disability-home-resources/)
- [YuYu Hot Water Bottle Review: ‘Surround Warmth’ for Pain Relief](https://www.achronicvoice.com/2018/08/19/yuyu-bottle-review/)
### Written for Clients on Their Website
- [Nourish Dental Sleep & TMJ Care](https://nourishdentalcare.com/) (Copywriting for entire website, including case studies and blog posts)
- [Innovez Engineering](https://www.innovezengineering.com/) (Copywriting for entire website)
- [Content Collective](https://contentcollective.com.sg/) (Copywriting for entire website)
- [HGT Consultancy](https://hgtconsultancy.com/) (Copywriting for entire website
### In the News
#### Huffington Post:
- [This is What Hell Must Feel Like](http://www.huffingtonpost.com/entry/this-is-what-hell-must-feel-like%5Fus%5F57620697e4b057ac661b6201)
- [So This is What a Seizure Feels Like](http://www.huffingtonpost.com/entry/so-this-is-what-a-seizure-feels-like%5Fus%5F57695419e4b048b0aa9b89fc)
- [Don’t Compare, Your Life Destination is Your Own Special Mission](http://www.huffingtonpost.com/entry/dont-compare-your-life-destination-is-your-own-special%5Fus%5F57d15ff0e4b0eb9a57b7a0c3)
- [What Neverending Pain Reveals to You](http://www.huffingtonpost.com/entry/what-neverending-pain-reveals-to-you%5Fus%5F58297901e4b02b1f5257a5df)
- [The Strange Sensations on a Train in China](http://www.huffingtonpost.com/entry/the-strange-sensations-on-a-train-in-china%5Fus%5F57620c73e4b07d4d0a41aff1)
#### Yahoo & Rice Media:
- [This is What It’s Like to Live With A Chronic and Invisible Illness in Singapore (Yahoo)](https://sg.style.yahoo.com/live-chronic-invisible-illness-singapore-022816819.html)
- [This is What It’s Like to Live With A Chronic and Invisible Illness in Singapore (Rice Media)](https://www.ricemedia.co/current-affairs-features-chronic-invisible-illness-singapore/)
#### Brit + Co:
- [I Am a Rebel—Even If I Don’t Look Like One to You](http://www.brit.co/i-am-a-rebel-even-if-i-dont-look-like-one-to-you/)
#### Thrive Global:
- [Words are just words. But what you associate them with can change your life.](https://thriveglobal.com/stories/words-change-life/)
- [Learning What You’re Worth When You Have Nothing in Your Life](https://journal.thriveglobal.com/learn-what-youre-worth-69d0410a099f)
- [It’s time to go to work…by sleeping](https://journal.thriveglobal.com/its-time-to-go-to-work-by-sleeping-2aadf6b69479)
- [How to be a Positive Thinker: Without the Unicorns & Rainbows](https://journal.thriveglobal.com/positive-thinker-unicorns-rainbows-3293fba38e2c)
- [I Have No Purpose in Life, and Therein Lies My Purpose](https://medium.com/thrive-global/no-purpose-life-d3830eea83d0)
#### Thought Catalog:
- [Why Fear Will Hurt You In The Long Run](http://thoughtcatalog.com/sheryl-chan/2016/12/why-fear-will-hurt-you-in-the-long-run/)
#### Pathways Health:
- [Pain Awareness Through Journaling, and Using It to Manage Chronic Pain](https://www.pathways.health/pain-awareness-through-journaling-and-using-it-to-manage-chronic-pain/)
- [What Fear’s Got to Do with Chronic Pain & Ways to Recover from It](https://www.pathways.health/what-fears-got-to-do-with-chronic-pain-ways-to-recover-from-it/)
#### The Mighty Site:
- [11 Visible Signs That Provide Evidence of an 'Invisible' Illness](https://themighty.com/2017/05/photos-lupus-sjogrens-heparin-blood-thinners/)
- [3 Reminders for the Days Depression Leaves You Feeling Defeated](https://themighty.com/2016/11/what-to-remember-on-the-days-depression-leaves-you-feeling-defeated/)
- [Why I Look Forward to Getting Older With Chronic Illness](https://themighty.com/2016/06/learning-to-slow-down-with-lupus-and-sjogrens-syndrome/)
- [To the Person Wondering, ‘Is My Doctor Right for Me?’](https://themighty.com/2016/01/to-the-person-wondering-is-my-doctor-right-for-me/)
- [4 Things Healthy People Do That Can Affect Those With Weak Immune Systems](https://themighty.com/2017/02/what-to-say-rude-comments-chronic-disease/)
- [My Strategy for When the Pain Is Unbearable](https://themighty.com/2016/01/when-the-pain-that-comes-with-lupus-is-unbearable/)
- [9 Acts of Kindness That Have Brought Me Joy in the Midst of Pain](https://themighty.com/2016/02/chronic-illness-acts-of-kindness-that-have-brought-me-joy-in-pain/)
- [To the People Who Think My Pain Is 'No Big Deal'](https://themighty.com/2016/02/when-people-dont-understand-your-arthritis-pain/)
- [When the Effects of My Chronic Stress Could No Longer Be Ignored](https://themighty.com/2016/02/when-the-effects-of-my-chronic-stress-could-no-longer-be-ignored/)
- [When the Person Being Unkind About Your Chronic Illness Is You](https://themighty.com/2016/02/being-unkind-to-yourself-about-your-chronic-illness/)
- [When Loved Ones Can’t Comprehend What We Go Through With Our Chronic Illnesses](https://themighty.com/2016/02/when-loved-ones-cant-comprehend-what-we-go-through-with-our-chronic-illnesses/)
- [The Poem That Reminds Me We Are All Living Miracles](https://themighty.com/2016/03/the-poem-that-reminds-me-we-are-all-living-miracles/)
- [What Does 'Living With a Chronic Illness' Really Mean?](https://themighty.com/2016/03/what-it-really-means-to-live-with-a-chronic-illness/)
- [To the Person With Chronic Illness Who Is Impatient to Get Better](https://themighty.com/2016/03/inspirational-quotes-for-people-with-chronic-illness-impatient-to-get-better/)
- [The Chronic Illness Advice That Could Quite Literally Kill Me](https://themighty.com/2016/03/chronic-illness-advice-variation-in-diet-for-people-with-antiphospholipid-syndrome/)
- [12 Important Lessons I've Learned From Starting a Chronic Illness Blog](https://themighty.com/2016/05/starting-a-chronic-illness-blog-what-ive-learned/)
- [10 Things I Didn't Appreciate Until I Became Chronically Ill](https://themighty.com/2016/05/10-things-i-am-grateful-to-do-while-sick/)
- [When My Loved Ones' Support Made It Harder to Recover From Health Challenges](https://themighty.com/2016/05/how-to-support-a-friend-with-health-challenges/)
- [What I Seldom Compare Myself to After I Became Chronically Ill](https://themighty.com/2016/07/chronic-illness-comparing-myself-to-the-other-wonderful-parts-of-me/)
- [Why I Need to See 10 Different Doctors on a Regular Basis](https://themighty.com/2016/07/the-doctors-i-see-for-my-autoimmune-chronic-diseases/)
- [Yes, You're Allowed to Feel Upset About Your Illness](https://themighty.com/2016/08/why-its-ok-to-be-sad-about-your-illness/)
- [Here's What It Takes for Me to 'Have Fun' While Chronically Ill](https://themighty.com/2016/08/what-i-do-to-take-care-of-my-illnesses-before-having-fun/)
- [Why My Favorite Birthday Memories Include My Chronic Pain](https://themighty.com/2017/03/celebrating-your-birthday-with-chronic-pain/)
### Guest Post on Other Sites
- [The Power and Purpose of Blogging, and Why You Should Write](http://writersam.co.uk/the-power-and-purpose-of-blogging-and-why-you)
---
## Sign Up for My Free Newsletter
Be the first to get the latest post updates in your inbox, and unlock the comments section. You will also receive an e-book full of uplifting messages, quotes and illustrations as a token of appreciation!
[Browse more membership plans here](#/portal/), or [make a one-off donation](https://achronicvoice.com/#/portal/support) instead.
Sign Up
Email sent! Check your inbox to complete your signup.
No spam. Unsubscribe anytime.
## Contact Me
*Contact me using the form below, or email me directly at sheryl @ achronicvoice.com*
### Privacy Policy
URL: https://achronicvoice.com/privacy-policy/
Last updated: 2025-05-18T14:33:26.000Z
Your privacy matters to us on this Site, A Chronic Voice (achronicvoice.com). This Privacy Policy describes our practices concerning the information we collect from you when you browse our website, social media accounts, and/or emails. This policy also describes the types of information we collect when you interact with our website, social media accounts, and/or emails, how we use and protect that information, how long we retain it, and with whom we share it with. By viewing or interacting with any of these platforms, you consent to our collect and use of information as described in this Privacy Policy.
## **Comments**
When visitors leave comments on the Site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection.
An anonymised string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: . After approval of your comment, your profile picture is visible to the public in the context of your comment.
## **Media**
If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website.
## **Contact Forms & Data Collection**
This notice applies to all information collected or submitted on A Chronic Voice's website, emails, and/or social media accounts. The types of personal information collected at these pages are:
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## **How We Use Information**
You can register with A Chronic Voice's Site if you would like to receive our newsletter, which includes updates on our latest blog posts, recommended articles from around the web, freebies, campaigns, sponsored posts, and/or any new products or services. You will not be signed up unless you fill out and submit the registration form yourself.
Personal information may also be used to customise and improve your browsing experience, such as adaptation to your mobile or desktop browser size.
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### Contribute
URL: https://achronicvoice.com/contribute/
Last updated: 2026-08-10T05:33:42.000Z
**\*Currently not accepting guest posts.**
## About This Blog
A Chronic Voice is a health, wellness and chronic illness blog. It covers a broad range of topics, from disability to chronic pain and mental health, as these are often interconnected. I write most of the content here, but accept guest posts, too.
You can browse this website to get a feel of the tone and type of content preferred on this blog, and also [read some of the ‘Published’ articles on my work site here](https://work.achronicvoice.com/). **Do take note of the following guidelines, before you pitch your post idea using the contact form at the end of the page.**
*\*Disclaimer: This website is meant solely for educational purposes. None of the articles - whether written by me or a contributor - is to be taken as medical advice. Please consult your own doctor before adding or change *any* new treatment protocols. Once an article has been published, it belongs to A Chronic Voice LLP, unless agreed upon otherwise. Affiliate links may be added to posts, which will cost users nothing to click on. I will make a small referral fee from any purchases made, which helps with the maintenance of this blog. Read* [***our Privacy Policy page***](https://achronicvoice.com/privacy-policy/) *for more information. Thank you!*
## Contribution Guidelines
1. Content must be **unpublished elsewhere**, including your own blog.
2. **I do not accept AI-generated content**. All guest posts should be highly personal, whether you are sharing tips or stories about your life with chronic illness and/or disability.
3. It would be great if you could provide links to a few articles that you’ve written in the past.
4. You may pitch your idea before writing to see if it will be a good fit.
5. After pitch approval, please send the **final, error-free draft (not the first draft!)** to me. I may edit it further before publishing, or reject it for any reason.
6. The article should have a minimum word count of **1,000 words**, excluding titles and subtitles.
7. All **facts and statistics that you cite** must link back to their original source. The source should be a credible one, such as a governmental or educational body, or medical journal.
8. Kindly wait for **2 weeks** for a response. If you don’t hear from me, feel free to follow up again.
9. Photos that are relevant to your guest post are always helpful. I will create the featured and Pinterest images on my end for the purpose of consistency.
10. Do include a profile photo and short bio about yourself (approximately 150 words), and links to your social media and/or website. These will be featured at the end of the post.
11. There will be no payment for guest posts from contributors. It is meant for cross-promotional purposes, and I will share it to all my social media channels.
## Guest Posts Others Have Contributed to the Blog
Here is a sample of top 10 guest posts on the blog, written by people with chronic and/or mental illnesses, and also by caregivers. Each piece has an important story to tell, or point to make.
Top 10 Guest Posts on the Blog:
1. [What’s it Like to be a Caregiver for a Chronically Ill Loved One (The Challenges & Rewards)](https://achronicvoice.com/caregiver-chronically-ill-loved-one/)
2. [Why Self-Acceptance is Important When You Have a Chronic Illness](https://achronicvoice.com/self-acceptance-chronic-illness/)
3. [A Day in the Life of a ‘POTSie’ (A What??)](https://achronicvoice.com/day-in-life-potsie/)
4. [7 Ways to Be a Better Friend to Someone with a Chronic Illness (and 3 Things You Should Never Do)](https://achronicvoice.com/better-friend-chronic-illness/)
5. [I May be Chronically Ill, but I’m Also Chronically Resilient](https://achronicvoice.com/chronically-ill-resilient/)
6. [Is Yoga Accessible for People with Chronic Illness?](https://achronicvoice.com/accessible-yoga-chronic-illness/)
7. [When Autoimmune Disorder Ravages Your Face (and How That Led to My Body Dysmorphic Disorder)](https://achronicvoice.com/body-dysmorphic-disorder/)
8. [How to Set Healthy Boundaries in Your Relationships with Chronic Illness](https://achronicvoice.com/healthy-boundaries-relationships-chronic-illness/)
9. [The Chronic Pain Cycle & How to Break It (Top Tips From an Occupational Therapist)](https://achronicvoice.com/break-chronic-pain-cycle-occupational-therapist-tips/)
10. [5 Things You Should Know About My Epilepsy (It's More Than Just Seizures)](https://achronicvoice.com/epilepsy-more-than-just-seizures/)
## Advertisements & Sponsored Posts
Feel free to contact me via the form below for any advertising-related services, or if you would like to hire me for any medical writing or web development work. You can find me on [LinkedIn](https://www.linkedin.com/in/sherylchan/), [view my portfolio](https://work.achronicvoice.com/) and [**download my media kit**](https://cdn.achronicvoice.com/achronicvoice-sheryl-chan-media-kit.pdf) for more information.
---
---
## Sign Up for My Free Newsletter
Be the first to get the latest post updates in your inbox, and unlock the comments section. You will also receive an e-book full of uplifting messages, quotes and illustrations as a token of appreciation!
[Browse more membership plans here](#/portal/), or [make a one-off donation](https://achronicvoice.com/#/portal/support) instead.
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Pin to Your Chronic Illness & Guest Post Contribution Boards:
### My Diary Entries (Blog Posts Written for Community Linkups)
URL: https://achronicvoice.com/diary-entries/
Last updated: 2026-09-01T06:47:32.000Z
**\*Important Update: The linkups are now back in action as of July 2026! Join us in the current one here:**
[Join This Month's Linkup](https://achronicvoice.com/september-writing-prompts-chronic-illness-disabilities-2026/)
## The Monthly Community Linkups I Used to Run
You may be wondering, “what are linkups”? In brief, they are blog posts written in response to writing prompts, and gathered in one central location online – usually on the host's website. They function just like a networking event or meet up of like-minded people, except that it's all done online.
Linkups can be done via a comments thread. Another popular tool is inLinkz, which I used to use. All you need to do is insert the code snippet onto the web page, which then allows people to submit and view each others' entries via the widget.
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
[Subscribe for More](#/portal/)
## Why Did I Stop Running These Linkups?
I ran these linkups for 7 years (time flies a little too freakishly for my liking...). Towards the end, I was basically just coming up with new writing prompts and setting the page up for a few other bloggers, without participating in them myself. The number of participants had also reduced over the years. It had become more of a chore than pleasure to do, and without a great number of benefits either.
## Why Don't I Delete This Page, Then?
For the exact same reason as to why I ran them for 7 years – they're a timeline and treasure trove of memories. When I 'flipped through' all the blog posts I had written for these linkups, I realised that they were like diary entries. Many of them were personal, heartfelt pieces, as compared to the other posts on my blog, which had a more advocacy or research spin to them.
Reading them also brought back many memories, both the good and bad. I also realise how my perspective about life has morphed over the years – subtly month by month.
### A Mix of Good and Bad Memories
The good – I find happy photos of friends, pets or events that I had forgotten all about, and see how I've grown as a person despite chronic illness and disability.
The bad – it also resurfaced unhappy periods of time in my life, and I felt a bit of despair that I haven't progressed in terms of health, but regressed instead. I also feel like I'm stuck in time, as certain desires or milestones are still the same as before. For example, I haven't 'climbed' any ladders in terms of career, family or life goals.
### Memories are Footprints of a Life Lived
Regardless, memories are precious. And having my thoughts written down at that point of time is definitely much more accurate than if I try to conjure that moment in time again. As they say, your memory of events became less reliable the more time passes by.
So in a way, those entries, whilst quite 'useless' for SEO, are in fact more precious than SEO. They are a smudge on the wall as the train of life speeds by, a small marker of existence. Also, they might just come in handy when I start actually sitting down to write my memoir 😂
I hope you enjoy the trip down memory lane as much as I did 🙂
---
## Timeless Linkups
- [My Responses to “A Day in the Life” Linkup (What Does 'Normal' Even Mean?)](https://achronicvoice.com/a-day-in-the-life/)
- [Invisible Cities Linkup: Pros & Cons of Living with Chronic Illness in Your City](https://achronicvoice.com/invisible-cities-linkup/)
---
## Monthly Linkup Party for People with Chronic Illnesses
### September 2026 Linkup Entries
- [Community submissions from September 2026](https://achronicvoice.com/september-writing-prompts-chronic-illness-disabilities-2026/)
### August 2026 Linkup Entries
- [Community submissions from August 2026](https://achronicvoice.com/august-writing-prompts-chronic-illness-disabilities-2026/)
- [Treatment for AIN 3 — My Experience with Imiquimod & Anal Excision](https://achronicvoice.com/treatment-for-ain-3-my-experience-imiquimod-anal-excision/)
### July 2026 Linkup Entries
- [Community submissions from July 2026](https://achronicvoice.com/2026-july-writing-prompts-chronic-illness-disability/)
- [A Quick Catch-up with My Chronic Illness Writing Community This July 2026](https://achronicvoice.com/catch-up-chronic-illness-writing-community-july-2026/)
---
### My 2021 Linkup Entries
- **June 2021:**
[It is \*Always\* Possible to Make Time for What Matters Most](https://achronicvoice.com/make-time-what-matters-most/)
- **March 2021:**
[Why I Moved from SiteGround to Cloudways (and Couldn't be Happier). Plus Cute Puppy Pics & A New Pacing Strategy.](https://achronicvoice.com/moved-from-siteground-to-cloudways/)
- **February 2021:**
[The Barriers That Throw Rocks into My Bucket List with Chronic Illness](https://achronicvoice.com/bucket-list-chronic-illness/)
- **January 2021:**
[Timeless Duties Toward Life Every New Year](https://achronicvoice.com/new-year-duties-life/)
### My 2020 Linkup Entries
- **October 2020:**
[The Savagery of Panic Attacks & The Saving Grace of Internet Friends](https://achronicvoice.com/panic-attacks-internet-friends/)
- **September 2020:**
[Triggers Trigger Triggers (Re-Stabilisation Procedure Encore)](https://achronicvoice.com/triggers-trigger-triggers-re-stabilisation/)
- **July 2020:**
[July's Supply & Demand: Learning to Maximise Wellbeing in the Midst of Stress](https://achronicvoice.com/july-maximise-wellbeing-stress/)
- **June 2020:**
[A Car Accident & A Song Gone Silent (How Life Lessons from Chronic Illness Tide Me Through)](https://achronicvoice.com/chronic-illness-life-lessons-accident-bird/)
- **May 2020:**
[To Live with Chronic Illness is to Learn to Live with Maybes](https://achronicvoice.com/chronic-illness-maybes/)
- **April 2020:**
[A Hurried Return, but Chronic Illness's Opening Hours Remain Unchanged](https://achronicvoice.com/chronic-illness-opening-hours/)
- **March 2020:**
[Winter Fun, Games & Pain with Chronic Illness](https://achronicvoice.com/winter-fun-chronic-illness/)
- **February 2020:**
[Coming Alive in the Winter Air (Pushing for Personal Changes & Group Advocacy)](https://achronicvoice.com/winter-advocacy/)
- **January 2020:**
[Hello 2020: A Bubble Covered in Glitter. Please Don’t Pop.](https://achronicvoice.com/hello-2020-bubble-glitter-dont-pop/)
### My 2019 Linkup Entries
- **December 2019:**
[Travelling New Paths with Chronic Illnesses in My Pocket](https://achronicvoice.com/travelling-new-paths-chronic-illness/)
- **November 2019:**
[Plunging Into a Sparkling Sky of Unknown Possibilities, with a Tinge of Nostalgia in Tow](https://achronicvoice.com/unknown-possibilities-nostalgia/)
- **October 2019:**
[Life is All Sorts of Crazy, but She's Definitely a Keeper](https://achronicvoice.com/life-is-crazy-but-keeper/)
- **September 2019:**
[On Being a Decent Human Being and Other Thoughts](https://achronicvoice.com/being-decent-human-being/)
- **August 2019:**
[A Perfect Capture of Life with Chronic Illness](https://achronicvoice.com/capture-life-with-chronic-illness/)
- **July 2019:**
[The Eternal Spoonie Struggle: Justifying Rest & Recovery Time](https://achronicvoice.com/spoonie-justifying-rest-recovery-time/)
- **June 2019:**
[A Pain Pill, a Caress, an Exhalation of Relief](https://achronicvoice.com/pain-pill-caress-relief/)
- **May 2019:**
[Investigating Chronic Pain Levels Post-Dengue Fever](https://achronicvoice.com/may-2019-investigating-chronic-pain-post-dengue-fever/)
- **April 2019:**
[Tiring First Quarter Being Muggle Sick](https://achronicvoice.com/tiring-first-quarter-muggle-sick-april-2019/)
- **March 2019:**
[Epic Fail and Redefining Success](https://achronicvoice.com/epic-fail-redefining-success-march-2019/)
- **February 2019:**
[Hopes to Awaken Life Within Me Again](https://achronicvoice.com/february-2019-awaken-life-within-me/)
- **January 2019:**
[Chronic Pain has a Hold on Me, and I Need to Break It](https://achronicvoice.com/chronic-pain-hold-break-it-january-2019/)
### My 2018 Linkup Entries:
- **December 2018:**
[De-Stressing and Winding Down in December 2018](https://achronicvoice.com/de-stressing-december-2018/)
- **November 2018:**
[Meeting and Collaborating with Chronically Ill People in Real Life](https://achronicvoice.com/meeting-collaborating-chronically-ill-real-life-november-2018/)
- **October 2018:**
[Trying to Earn Passive Income Whilst Pacing](https://achronicvoice.com/passive-income-pacing-october-2018/)
- **September 2018:**
[Reconnecting with Friends & Family, and Sharing on Social Media](https://achronicvoice.com/reconnecting-friends-family-sharing-social-media-september-2018/)
- **August 2018:**
[Boredom Can be Stimulating & Cuddling My Pet Birds](https://achronicvoice.com/boredom-stimulating-cuddling-birds-august-2018/)
- **July 2018:**
[Blogging Rants & Protecting My Peace](https://achronicvoice.com/blogging-rants-protecting-my-peace-july-2018/)
- **June 2018:**
[Self-Reminder on Listening to Your Body](https://achronicvoice.com/self-reminder-listening-to-your-body-june-2018/)
- **May 2018:**
[In Memory of My Parrotlets & Designing My Days](https://achronicvoice.com/memory-parrotlets-designing-my-days-may-2018/)
- **April 2018:**
[Marvelling at the Miracle of Life & Splurging for My Birthday](https://achronicvoice.com/marvelling-miracle-of-life-splurging-birthday-april-2018/)
- **March 2018:**
[Sorting My Medications & a Hike Up Little Adam's Peak](https://achronicvoice.com/sorting-medications-hike-little-adams-peak-march-2018/)
- **February 2018:**
[Adapting to the Ebb & Flow of Chronic Pain and Depression](https://achronicvoice.com/adapting-ebb-flow-chronic-pain-depression-february-2018/)
- **January 2018:**
[Reflections on My Refreshing Holiday in Australia](https://achronicvoice.com/reflections-refreshing-holiday-in-australia-january-2018/)
### My 2017 Linkup Entries:
- **December 2017:**
[Recovering from a Cold & Reminiscing My Childhood in Hong Kong](https://achronicvoice.com/recovering-from-cold-reminiscing-childhood-hong-kong-december-2017/)
- **November 2017:**
[Discovering the Importance of Gut Health & Rediscovering Old Friendships](https://achronicvoice.com/discovering-gut-health-old-friendships-november-2017/)
- **September 2017:**
[Resisting the Urge to Stress Myself Out Unnecessarily & Supporting the Supporters](https://achronicvoice.com/resisting-stress-supporting-supporters-september-2017/)
- **August 2017:**
[Missing a Stable Income & Striving Towards Healthier Habits](https://achronicvoice.com/missing-stable-income-striving-healthier-habits-august-2017/)
## That's All for My Diary Entries!
So there we go — almost 7 years of self-reflection, using the writing prompts in the monthly linkups. You'll also notice that there is no 2022 or 2023 listed, as I had personally stopped submitting entries.
I hope you enjoyed the trip down memory lane together with me. Do or did you also participate in other linkups? What are your thoughts then and now – are they similar or different from mine?
## Sign Up for My Free Newsletter
Be the first to get the latest post updates in your inbox, and unlock the comments section. You will also receive an e-book full of uplifting messages, quotes and illustrations as a token of appreciation!
[Browse more membership plans here](#/portal/), or [make a one-off donation](https://ghost.achronicvoice.com/#/portal/support) instead.
Sign Up
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No spam. Unsubscribe anytime.
### Chronic Illness Quotes to Inspire, Motivate, Grieve, Hope & Laugh About
URL: https://achronicvoice.com/chronic-illness-quotes/
Last updated: 2026-08-26T15:11:34.000Z
As someone who's chronically ill, a good quote - be it inspirational, sad, funny, even morbid (maybe especially morbid!) - can inspire me to carry on for another day. Words are magical. String them in a sequence, and they can generate so much hope. Rearrange them again, and they can serve to inspire, then stir up fury, before instilling calm once more. I have put together some chronic illness quotes on this page, in hope that it helps you through your day.
I personally believe that the best way to deal with chronic pain is through acceptance of our emotions, circumstances, limitations and strengths. I admit that this isn't easy to do, and I still struggle with it. I've arranged the chronic illness quotes below into categories that I feel suits them best to make for easy viewing. I'd also like to emphasise the importance of perspective; some quotes help me today, but not tomorrow. So take only what you need today.
It is also my hope that this chronic illness quotes page becomes a community hub. If you have a good quote that you'd like to share, be it from a book, movie, or even your own, please click on 'Contribute a Quote' button below. I plan on updating this page with more chronic illness quotes every now and then, so do come back to browse if you enjoy a good quote. Don't forget to pin your favourite quotes here to share and refer to as well. Thank you and happy browsing!
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice*. Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog.* [***Read our Privacy Policy page***](https://achronicvoice.com/privacy-policy/) *for more information. Thank you!*
Changelog:
- **19 April 2026**: New Quotes Added
- **15 March 2025**: New Quotes Added
[Contribute a Quote](https://forms.gle/M81ApAMdPv15nG6W7)
Read Related Posts:
- [Tell Me You’re Chronically Ill Without Telling Me You’re Chronically Ill (Chronic Illness Memes)](https://achronicvoice.com/chronic-illness-memes/)
- [365 Mindfulness Journaling Prompts for Self-Improvement](https://achronicvoice.com/365-mindfulness-journaling-prompts-for-self-improvement/)
## Quotes on Healing & Coping with Chronic Pain
“Healing involves discomfort. But so is refusing to heal. And over time, refusing to heal is always more painful.” – Resmaa Menakem
“You will get through this. You don’t really have a choice.” – Art of Poets
“Nobody realises that some people expend tremendous energy merely to be normal.” – Albert Camus
“Sometimes nourishing yourself means subtracting, not adding.” - Sheryl Chan, A Chronic Voice (**[Read the post here](https://achronicvoice.com/july-maximise-wellbeing-stress/)**.)
“Pain is always new to the sufferer, but loses its originality for those around him. Everyone will get used to it except me.” ― [Alphonse Daudet, In the Land of Pain](https://www.amazon.com/dp/1101970863?&linkCode=ll2&tag=achronicvoice-20&linkId=6ec5860701f839c70702242712ddea8d&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“People go through so much pain trying to avoid pain.” — Neil Strauss
“Strength isn't always shown in what you can hold on to, sometimes it's shown in what you can let go of.” ― Aubrey Drake Graham
“It's okay to do less when you're coping with more.” — Various sources attributed
Read Related Posts:
- [Fun Things To Do While Recovering From Surgery: Hobbies, Crafts & Games](https://achronicvoice.com/fun-things-to-do-while-recovering-from-surgery/)
- [Uplifting Activities to Do While Recovering in Bed](https://achronicvoice.com/uplifting-activities-to-do-while-recovering-in-bed/)
- [My Recovery Time for Simultaneous Bilateral Patellar Tendon Rupture (With Lupus & Steroid Treatment)](https://achronicvoice.com/recovery-time-for-simultaneous-bilateral-patellar-tendon-rupture/)
- [How to Use the 7 Dimensions of Wellness to Thrive with Chronic Pain](https://achronicvoice.com/dimensions-of-wellness-thrive-chronic-pain/)
- [Why Painkillers are One of My Biggest Allies for a Decent Quality of Life](https://achronicvoice.com/painkillers-quality-of-life/)
## Inspirational Quotes for the Chronically Ill
“When it is obvious that the goals cannot be reached, don’t adjust the goals, adjust the action steps.” – Confucius
“Start by doing what is necessary, then what is possible, and suddenly you are doing the impossible.” – Francis of Assisi
“And now you don’t have to be perfect, you can be good.” – John Steinback
“The best place to succeed is where you are with what you have.” – Charles Schwab
“Do not let what you cannot do interfere with what you can do.” – John Wooden
“There are victories of the soul and spirit. Sometimes, even if you lose, you win.” – Eliezer Wiesel
“I am only one, but still I am one. I cannot do everything, but still I can do something. And because I cannot do everything, I will not refuse to do the something I can do.” – Edward Everett Hale
“Real generosity toward the future lies in giving all to the present.” – Albert Camus
“Things work out best for those who make the best of how things work out.” – John Wooden
“When you reach the end of your rope, tie a knot in it and hang on.” – Franklin D. Roosevelt
“There are plenty of difficult obstacles in your path. Don’t allow yourself to become one of them.” – Ralph Marston
“I'm not afraid of storms, for I'm learning how to sail my ship.” - Louisa May Alcott
*Thank you to [@serenebutterfly](https://x.com/serenebutterfly) of [brainlesionandme.com](https://www.brainlesionandme.com/) for the contribution!*
“Everyone is gifted - but some people never open their package!” - Wolfgang Riebe
“Don’t believe everything you think.” - Robert Fulghum
“Courage isn’t having the strength to go on - it is going on when you don’t have strength.” - Napoleon Bonaparte
“It’s not the load that breaks you down, it’s the way you carry it.” - Lou Holtz
“You cannot see your reflection in boiling water. Similarly, you can’t see the truth in a state of anger. When the waters calm, clarity comes.” - Unknown
“We are like books. Most people only see our cover, the minority read only the introduction, many people believe the critics. Few will know our content.” - Emile Zola
“Remember that sometimes not getting what you want is a wonderful stroke of luck.” — [Dalai Lama](https://www.dalailama.com/)
“Balance isn't fitting everything in. It's starting with what's important and letting the rest fall as it will.” — Erica Layne
“We are not going in circles, we are going upwards. The path is a spiral; we have already climbed many steps.” — Hermann Hesse
Read Related Posts:
- [How to be a Positive Thinker: Without the Unicorns & Rainbows](https://achronicvoice.com/positive-thinker-without-unicorns-rainbows/)
- [You Don’t Have to be Strong, Just a Little Stronger Than Before](https://achronicvoice.com/you-dont-have-to-be-strong/)
- [7 Reminders For Those Bad Days to Keep You Going](https://achronicvoice.com/reminders-for-bad-days/)
- [Asking for Help (and Why Everyone Needs to Learn this Important Life Skill)](https://achronicvoice.com/asking-for-help-life-skill/)
- [Flowers are the Most Beautiful When They’re Just About to Die (and What That’s Got to Do with Being a Spoonie)](https://achronicvoice.com/flowers-most-beautiful-die-spoonie/)
## Quotes on Time & Patience
“Patience is also a form of action.” - Auguste Rodin
“Breathe. What else in life could be more important than that?” - Sheryl Chan, A Chronic Voice (**[Read the full poem here.](https://achronicvoice.com/just-breathing-enough-today-poem/)**)
“Time is a created thing. To say ‘I don’t have time,’ is like saying, ‘I don’t want to.” – Unknown (Various sources attributed)
“If we take care of the moments, the years will take care of themselves.” - Maria Edgeworth
“You should sit in meditation for 20 minutes every day- unless you are too busy. Then you should sit for an hour.” - Zen Proverb (Also see: [The Little Book of Zen: Sayings, Parables, Meditations & Haiku](https://www.amazon.com/dp/1523512458?&linkCode=ll2&tag=achronicvoice-20&linkId=02d448db2ab0e449a67ad213d80fdee7&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl))
“If you're waiting for the right time... Time never comes, time only goes.” — Azereth Skivel
Read Related Posts:
- [It is \*Always\* Possible to Make Time for What Matters Most](https://achronicvoice.com/make-time-what-matters-most/)
- [40 People with Chronic Illness Share Their Best Pain Management Tips (What to Do if an Unforeseen Pain Flare Hits)](https://achronicvoice.com/pain-management-tips-pain-flare/)
- [Dealing with Pain, One Second at a Time](https://achronicvoice.com/dealing-with-pain/)
## Quotes on Joy & Happiness
“Stop looking for happiness in the same place you lost it.” - Anonymous
“Our idea of happiness is our main obstacle to happiness.” - Thich Nhat Hanh
Read Related Posts:
- [12 Lessons on Mindfulness (or ‘How to Relax’ by Thich Nhat Hanh)](https://achronicvoice.com/lessons-on-mindfulness-thich-nhat-hanh/)
- [Life with Chronic Illness: Happiness & Pain Can Co-exist](https://achronicvoice.com/chronic-illness-happiness-and-pain/)
- [Find Your Way Back to Happiness with a Chronic Illness](https://achronicvoice.com/find-happiness-chronic-illness/)
“The smallest act of kindness is worth more than the greatest intention.” - Kahlil Gibran
“Be kind whenever possible. It is always possible.” - Dalai Lama
“Joy exists whether you exist or not, and is always ripe for a taste.” – Sheryl Chan, A Chronic Voice
“When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.” — [Helen Keller](https://afb.org/about-afb/history/helen-keller/biography-and-chronology/biography)
Read Related Posts:
- [Kick Ass With Kindness and a Sweet Cherry on Top](https://achronicvoice.com/kick-ass-with-kindness/)
- [Useful Things to Do While on Bed Rest After Surgery: Education, Advocacy & Volunteering](https://achronicvoice.com/useful-things-to-do-while-on-bed-rest/)
- [Man’s Search for Meaning by Viktor Frankl: 16 Takeaways with Chronic Illness](https://achronicvoice.com/mans-search-for-meaning-chronic-illness/)
- [Why Humility is the Best Tool for Advocacy](https://achronicvoice.com/humility-advocacy/)
- [My Second Brush with Death: A Broken Heart (Literally)](https://achronicvoice.com/death-broken-heart/)
## Affirmations & Self-Love Chronic Illness Quotes
“Don’t set sail on someone else’s star.” - African Proverb
“Character is what you know you are, not what others think you have.” – Marva Collins
“The most common way people give up their power is by thinking they don't have any.” - Alice Walker
“There is only one me amongst the billions of us on this planet, and we are all worth something in that regard.” - Sheryl Chan, A Chronic Voice (**[Read the post here](https://achronicvoice.com/dating-with-chronic-illness/)**.)
“My body is a bloody mess, but I love it just the same.” - Sheryl Chan, A Chronic Voice
“Certain things lose their power the moment you accept them to be true, because they can no longer prey on your thoughts. Take your self-confidence back.” - Sheryl Chan, A Chronic Voice (**[Read the post here](https://achronicvoice.com/loss-of-identity-chronic-illness/)**.)
“My vulnerability may symbolise weakness, yet becomes a strength when used like a knife. I don’t have to put the broken pieces back together, because what would I cut and mark with, then?” - Sheryl Chan, A Chronic Voice (**[Read the post here](https://achronicvoice.com/loss-of-identity-chronic-illness/)**.)
“The only thing that was ever wrong with me was my belief that there was something wrong with me.” - Glennon Doyle
“Be you, love you. All ways, always.” - Alexandra Elle
“A bird sitting on a tree is never afraid of the branch breaking, because its trust is not on the branch but on its own wings.” - Charlie Wardle
“Most people overestimate what they can do in one year and underestimate what they can do in ten years.” - Known as [“Gates’ Law”](https://fs.blog/gates-law/); original author unknown
“When you give up, there is a sense of despair and lost hope. There is nothing else to look forward to in life. Self-acceptance on the other hand is empowering.” - Sheryl Chan, A Chronic Voice (**[Read the post here](https://achronicvoice.com/loss-of-identity-chronic-illness/)**.)
“You can only lose something that you have, but you cannot lose something that you are.” - Eckhark Tolle
“Remember no one can make you feel inferior without your consent.” - Eleanor Roosevelt
“Your story is what you have, what you will always have. It is something to own.” – [Michelle Obama](https://www.amazon.com/dp/1524763144?&linkCode=ll2&tag=achronicvoice-20&linkId=c0adc9e4eb8ae3a356ea265fa89ac541&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Sometimes when you lose your way, you find yourself.” — [Mandy Hale](https://www.amazon.com/dp/1546012354?&linkCode=ll2&tag=achronicvoice-20&linkId=c9d8f25654688a974c01a196c95258f0&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“You have been criticising yourself for years and it hasn't worked. Try approving of yourself and see what happens.” — [Louise Hay](https://www.amazon.com/dp/1401912095?&linkCode=ll2&tag=achronicvoice-20&linkId=7a3aeb49ad1cad7b1f51dca5b52a8d8c&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“We are all ordinary. We are all boring. We are all spectacular. We are all shy. We are all bold. We are all heroes. We are all helpless. It just depends on the day.” — Brad Meltzer
“Your scars are a warning to all future monsters, of the hell you have survived before them, every demon you vanquished, and every battle you won.” — [Nikita Gill](https://www.amazon.com/dp/0316519847?&linkCode=ll2&tag=achronicvoice-20&linkId=d9aec7be3f1f3aeb18b2796d5b3b9a67&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“There is nothing wrong with being fragile, my dear. A fragile thing like you has the power to cut someone in two.” - Eloise Night **[(Read related post here.)](https://achronicvoice.com/loss-of-identity-chronic-illness/)**
“No one can heal you the way you can heal yourself, and that’s one of your greatest superpowers.” – Spiritual League?
“What other people think of me is none of my business.” — [Wayne Dyer](https://www.amazon.com/stores/author/B000AQ104Y/allbooks?ccs%5Fid=d0f58121-b631-4a80-8e50-cf1d9b75b7a1&linkCode=ll2&tag=achronicvoice-20&linkId=28e24be4d99b4d55d8b193629bb057ca&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“You cannot be anything you want to be - but you can be a lot more of who you already are.” — [Tom Rath, Strengths Finder](https://www.amazon.com/dp/159562015X?&linkCode=ll2&tag=achronicvoice-20&linkId=c38e8beef6899c46f1fdce6f7ad704b5&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Capability is to pursue life, but sometimes that means focusing inwards and not pushing outwards.” - Sheryl Chan, A Chronic Voice. (**[Read the post here.](https://achronicvoice.com/capable-person-meaning/)**)
“Self-compassion is an extension of acceptance, where we give ourselves the permission we need to heal.” - Sheryl Chan, A Chronic Voice (**[Read the post here.](https://achronicvoice.com/dimensions-of-wellness-thrive-chronic-pain/)**)
“Be careful how you are talking to yourself, because you are listening.” — Lisa Hayes
“Humility is not thinking less of yourself, it’s thinking of yourself less.” - Rick Warren (**[Read the post here.)](https://achronicvoice.com/humility-advocacy/)**
“I’ll never harden my heart, but I’ve toughened the muscles around it.” - Dolly Parton
“Humble enough to know
I can be replaced.
Wise enough to know
that there is nobody else like me.” — Unknown
Read Related Posts:
- [Loss of Identity with Chronic Illness & The Plot Twist: Sharpened Self-Worth](https://achronicvoice.com/loss-of-identity-chronic-illness/)
- [Are You a Capable Person? What Does That Even Mean?](https://achronicvoice.com/capable-person-meaning/)
- [Why Self-Acceptance is Important When You Have a Chronic Illness](https://achronicvoice.com/self-acceptance-chronic-illness/)
- [Call Me Sick Girl (Or How to Make Your Weakness Your Strength)](https://achronicvoice.com/sick-girl-make-weakness-strength/)
- [How to Have a Healthy Relationship with Your Body (Even with Chronic Illness)](https://achronicvoice.com/healthy-relationship-with-body-chronic-illness/)
[Subscribe for More](#/portal/)
## Productivity & Motivational Quotes
“If you do what you've always done, you'll get what you've always gotten.” - Anonymous
“The main thing is to keep the main thing the main thing.” — [Stephen Covey](https://www.amazon.com/dp/1982137274?&linkCode=ll2&tag=achronicvoice-20&linkId=d33410f2ce7b305348c7996a5c406d73&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Done is better than perfect.” - Sheryl Sandberg
“Act as if what you do makes a difference. It does.” - William James
“Don’t be pushed by your problems, be led by your dreams.” — [Ralph Waldo Emerson](https://www.amazon.com/stores/author/B000AP7ZOO/allbooks?ccs%5Fid=4bd62842-d8ab-4b91-b0b8-bb1933b22b13&linkCode=ll2&tag=achronicvoice-20&linkId=9f452636385b2e617c6b7c63bd5a2097&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Don’t be afraid to give up the good to go for the great.” - John D. Rockefeller
“If you want something you’ve never had, you must be willing to do something you’ve never done.” - Thomas Jefferson
“Face your fears voluntarily: that’s the cure.” - Jordan Peterson
“The master has failed more times than the beginner has even tried.” - Stephen McCranie (**[Read related post here.](https://achronicvoice.com/dont-compare-life-destination-special/)**)
“It is not the size of the dog in the fight that counts, but the fight in the dog that wins.” ― [Arthur G. Lewis, Stub Ends of Thought and Verse](https://www.amazon.com/dp/B00480PSMS?&linkCode=ll2&tag=achronicvoice-20&linkId=8a1d70c6a6c3de9979adb7b4ed0075b8&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Stay afraid, but do it anyway. What’s important is the action. You don’t have to wait to be confident. Just do it and eventually the confidence will follow.” — [Carrie Fisher](https://carriefisher.com/)
Read Related Posts:
- [Fun & Productive Things to Do on Digital Devices After Knee Surgery](https://achronicvoice.com/things-to-do-on-digital-devices-after-knee-surgery/)
- [Give Your Best Anyway, Even When You’re Feeling Depressed](https://achronicvoice.com/give-your-best-even-when-feeling-depressed/)
- [Depression After Knee Surgery & How to Cope](https://achronicvoice.com/depression-after-knee-surgery/)
- [Clinical Depression: Diagnosed 10 Years Late](https://achronicvoice.com/depression-diagnosed-late/)
- [#projChronicWisdom: Secret Motivation Tips for When You’re Unmotivated](https://achronicvoice.com/projchronicwisdom-motivation-tips/)
## Quotes on Life & Hope
“In three words I can sum up everything I've learned about life: it goes on.” — [Robert Frost](https://www.amazon.com/dp/9363119025?&linkCode=ll2&tag=achronicvoice-20&linkId=e67425c2561bdec4cfaf4eb0af0e16fe&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“The meaning of life differs from man to man, and from moment to moment.” - Viktor Frankl (**[Read more here.](https://achronicvoice.com/mans-search-for-meaning-chronic-illness/)**)
“Clay is fashioned into vessels; but it is on their empty hollowness that their use depends.” — [Lao Tzu](https://www.amazon.com/dp/0061142662?&linkCode=ll2&tag=achronicvoice-20&linkId=0463b92dc187bd47e88e5cdc33fa80a9&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl) (**[Read the post here.](https://achronicvoice.com/i-have-no-purpose-in-life/)**)
“How we spend our days is, of course, how we spend our lives.” — [Annie Dillard](https://www.amazon.com/stores/Annie-Dillard/author/B000APWASA?ccs%5Fid=89ab0c0b-230e-4687-8623-741cb994ae5d&linkCode=ll2&tag=achronicvoice-20&linkId=383eee039d6ae371a54bfeb9fb66d0bc&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“To live is the rarest thing in the world. Most people exist, that is all.” — [Oscar Wilde](https://www.amazon.com/dp/0007144369?&linkCode=ll2&tag=achronicvoice-20&linkId=b2c3b480d6225c00f49a8faf24ae6ac6&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“If life were predictable it would cease to be life, and be without flavour.” — [Eleanor Roosevelt](https://www.amazon.com/dp/1439192049?&linkCode=ll2&tag=achronicvoice-20&linkId=4f05defa5ef1842e930f542670337f0b&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Every next level of your life will demand a different you.” - Leonardo Di Caprio (**[Read the post for more insight.](https://achronicvoice.com/next-level-life/)**)
“Think of giving not as a duty but as a privilege.” - John D. Rockefeller Jr.
“Although the world is full of suffering, it is also full of the overcoming of it. My optimism, then, does not rest on the absence of evil, but on a glad belief in the preponderance of good and a willing effort always to cooperate with the good, that it may prevail.” ― [Helen Keller](https://www.amazon.com/dp/1542315824?&linkCode=ll2&tag=achronicvoice-20&linkId=195a7cf1074dc10640b54139d1f9d8e4&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Maybe life isn’t about avoiding the bruises. Maybe it’s about collecting the scars to prove that we showed up for it.” — [Hannah Brencher](https://www.amazon.com/stores/author/B00MAPCYTI?ccs%5Fid=5b2c6edb-5489-432a-9fab-c5fe0747b9ce&linkCode=ll2&tag=achronicvoice-20&linkId=317e2f4ad71dab1c3b87971457165f13&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Don’t let yesterday take up too much of today.” — [Will Rogers](https://www.amazon.com/dp/1482041391?&linkCode=ll2&tag=achronicvoice-20&linkId=283402abccb095526fcf43dc6c44300c&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Let the waves carry you where the light can not.” - Mohit Kaushik Yenugwar
“Live to the point of tears.” — [Albert Camus](https://www.amazon.com/stores/Albert-Camus/author/B000AQ541E?ccs%5Fid=f3a8e437-1239-4ff4-ab09-4183827c3d4f&linkCode=ll2&tag=achronicvoice-20&linkId=fe889835ecb1ac98c552028aa1a3f09b&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.” — [Helen Keller](https://www.amazon.com/dp/0486292495?&linkCode=ll2&tag=achronicvoice-20&linkId=6f1adff0ac08a1be5306478dc424d2b5&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“We must accept finite disappointment, but never lose infinite hope.” — [Martin Luther King, Jr.](https://www.amazon.com/dp/1250335647?&linkCode=ll2&tag=achronicvoice-20&linkId=ab382af99d2b6226492fad2ef531d524&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Life is like a piano; the white keys represent happiness and the black show sadness. But as you go through life's journey, remember that the black keys also create music.” - Ehssan
“To be a human being among people and to remain one forever, no matter in what circumstances, not to grow despondent and not to lose heart - that’s what life is all about, that’s its task.” — [Fyodor Dostoyevsky](https://www.amazon.com/dp/9362140527?&linkCode=ll2&tag=achronicvoice-20&linkId=e8ec7a027cd19ca382a8b73fb067b69b&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“People speak of hope as if it is this delicate, ephemeral thing made of whispers and spider’s webs. It's not. Hope has dirt on her face, blood on her knuckles, the grit of the cobblestones in her hair, and just spat out a tooth as she rises for another go.” - Matthew ([CrowsFault](https://x.com/CrowsFault/status/1502001835779014666))
“It is impossible to live without failing at something, unless you live so cautiously that you might as well not have lived at all, in which case you have failed by default.” — [J. K. Rowling](https://www.amazon.com/stores/J.K.-Rowling/author/B000AP9A6K?ccs%5Fid=52391492-6e88-49ea-bea9-b194e2abbdb7&linkCode=ll2&tag=achronicvoice-20&linkId=1e10dd8c5896c1e45525a47f3dd19c84&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“They tried to bury us, but they didn’t know we were seeds.” - Dinos Christianopoulos
Read Related Posts:
- [I Have No Purpose in Life, and Therein Lies My Life Purpose](https://achronicvoice.com/i-have-no-purpose-in-life/)
- [There’s No One Way to Live Your Life](https://achronicvoice.com/no-one-way-live-your-life/)
- [Every Next Level of Your Life Will Demand a Different You](https://achronicvoice.com/next-level-life/)
- [Life is a Long Process of Becoming Into…](https://achronicvoice.com/life-is-a-long-process-of-becoming-into/)
- [My Responses to “A Day in the Life” Linkup (What Does 'Normal' Even Mean?)](https://achronicvoice.com/a-day-in-the-life/)
## Quotes on Change & Resilience
“When we give ourselves permission to fail, we, at the same time, give ourselves permission to excel.” — [Eloise Ristad](https://www.amazon.com/stores/Eloise-Ristad/author/B001KMNCN4?ccs%5Fid=645fc25d-797a-41de-ae60-d30dd4e491c7&linkCode=ll2&tag=achronicvoice-20&linkId=9f7159ee63c444a6ed309303e8ca723f&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“The man who moves a mountain begins by carrying away small stones.” — [Confucius](https://www.amazon.com/dp/1941129498?&linkCode=ll2&tag=achronicvoice-20&linkId=6f401c3b42c0f5fd76932a0d4acf1e2e&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“The secret of change is to focus all of your energy not on fighting the old, but on building the new.” — [Socrates](https://www.amazon.com/dp/9355217889?&linkCode=ll2&tag=achronicvoice-20&linkId=8da6717f3509cc78c3a907880178e59a&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl) (**[Read the post here.](https://achronicvoice.com/secret-of-change/)**)
“If you don't like something, change it. If you can't change it, change your attitude.” — [Maya Angelou](https://www.amazon.com/stores/Maya-Angelou/author/B000AQ8Q00?ccs%5Fid=c84b7ffd-6122-4f82-b793-48bdb2a1b2a2&linkCode=ll2&tag=achronicvoice-20&linkId=04806ae7b252c79aa32587f42a0f2b92&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Impossible is merely possibility waiting to be solved. If we know it’s impossible, then we do not know enough.” - Sheryl Chan, A Chronic Voice (**[Learn more about my perspectives here.](https://achronicvoice.com/about/)**)
“If it costs you your peace, it's too expensive.” — [Nassim Nicholas Taleb, The Bed of Procrustes: Philosophical and Practical Aphorisms](https://www.amazon.com/dp/0812982401?&linkCode=ll2&tag=achronicvoice-20&linkId=cdc5fd23e63c181ca02df6f3619872b2&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Just take any step, whether small or large. And then another and repeat day after day. It may take months, maybe years, but the path to success will become clear.” — [Aaron Ross](https://www.amazon.com/stores/Aaron-Ross/author/B003GD50ZI?ccs%5Fid=5cff51ac-e619-4b4b-a43f-822de0fd73f0&linkCode=ll2&tag=achronicvoice-20&linkId=d1d3f1a4913968cc081b4e4ad9c0ca50&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl) (**[Read related post here.](https://achronicvoice.com/give-your-best-even-when-feeling-depressed/)**)
“To get better this year, means getting better today.” - Sheryl Chan, A Chronic Voice
“You won’t find the same person twice, not even in the same person.” — [Mahmoud Darwish](https://www.amazon.com/dp/1935744011?&linkCode=ll2&tag=achronicvoice-20&linkId=b4a52b187f9a60a21d6a12e7144415a8&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl) (**[Read related post here.](https://achronicvoice.com/next-level-life/)**)
“The goal is not to change who you are but to become more of who you are at your best.” — [Sally Hogshead](https://www.amazon.com/dp/0062230697?&linkCode=ll2&tag=achronicvoice-20&linkId=0bbb6c6c81f16ba7b571dc8e12b55d4e&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“A wise man once said: “Don’t be afraid to start over again. This time, you’re not starting from scratch. You’re starting from experience.” - Anonymous
“Where your fear is, there your task is.” — [Carl Jung](https://www.amazon.com/dp/9363112381?&linkCode=ll2&tag=achronicvoice-20&linkId=790976c0855ca79f2942aa8f6eec90a3&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl) (**[Read related post here.](https://achronicvoice.com/chronic-illness-unpredictable-dont-fear-unknown/)**)
“It is not the most intellectual of the speciesthat survives; it is not the strongest that survives; but the species that survives is the one that is able to adapt to and to adjust best to the changing environment in which it finds itself.” - [Charles Darwin](https://quoteinvestigator.com/2014/05/04/adapt/)
“If you think you are too small to make a difference, try sleeping with a mosquito.” — [Dalai Lama](https://www.amazon.com/dp/1573227544?&linkCode=ll2&tag=achronicvoice-20&linkId=32e7109432bc766c3b83a6855ce628bc&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Big things are built one brick at a time. Victories are achieved one choice at a time. A life well lived is chosen one day at a time.” — [Lysa TerKeurst](https://www.amazon.com/stores/Lysa-TerKeurst/author/B001IGJTPC?ccs%5Fid=567ee794-729d-43b4-89b5-c548ced334ea&linkCode=ll2&tag=achronicvoice-20&linkId=b1c0ae710e48590c8e047b86788116d5&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“It is impossible for you to go on as you were before, so you must go on as you never have.” — [Cheryl Strayed, Tiny Beautiful Things: Advice on Love and Life from Dear Sugar ](https://www.amazon.com/dp/0307949338?&linkCode=ll2&tag=achronicvoice-20&linkId=3cbf4fbb67794f12fc727b6375c13649&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“The only way to make sense out of change is to plunge into it, move with it, and join the dance.” ― [Alan Wilson Watts](https://www.amazon.com/stores/Alan-Watts/author/B000AP9KWO?ccs%5Fid=e0c07f5f-48e9-4291-9044-6d6f5c4e0f3e&linkCode=ll2&tag=achronicvoice-20&linkId=6627d593b02da41ffca72bf18bb6c8e6&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“We must be willing to let go of the life we planned so as to have the life that is waiting for us.” — [Joseph Campbell](https://www.amazon.com/stores/author/B000AQ33DK/about?ccs%5Fid=0d4c6ad4-2920-42ad-ab2e-e81f5918df83&linkCode=ll2&tag=achronicvoice-20&linkId=771f2eeb8675c6ff294356afe810507f&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
Read Related Posts:
- [The Secret of Change: Spend Your Energy Wisely with Chronic Illness](https://achronicvoice.com/secret-of-change/)
- [Dealing with Pain, One Second at a Time](https://achronicvoice.com/dealing-with-pain/)
- [What You Reshare Can Change Someone Else’s Life Forever](https://achronicvoice.com/what-you-reshare-can-change-life/)
## Funny Chronic Illness Quotes
“Even if you're on the right track, you'll get run over if you just sit there.” — [Will Rogers](https://www.amazon.com/dp/1482041391?&linkCode=ll2&tag=achronicvoice-20&linkId=492e28a6d65f229ca8a40d063ad88f65&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“People often say that motivation doesn't last. Well, neither does bathing - that's why we recommend it daily.” — [Zig Ziglar](https://www.amazon.com/stores/Zig-Ziglar/author/B000AP7VIY?ccs%5Fid=9620028c-57d1-4971-93b3-9978d1e88e7b&linkCode=ll2&tag=achronicvoice-20&linkId=85031e67bc445e8e1c48055ec742eed0&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Life gave me so many lemons I don't know what to do with all the spares. Would you like one?” - Sheryl Chan, A Chronic Voice (**[Check out more humorous chronic illness memes here](https://achronicvoice.com/chronic-illness-memes/)**.)
“If at first you don't succeed, have some cake.” “I see. Does it work?” “Every time.” ― [Charlie Mackesy, The Boy, the Mole, the Fox and the Horse](https://www.amazon.com/dp/0062976583?&linkCode=ll2&tag=achronicvoice-20&linkId=ed67e7625f42d84fe7806664e2f3f7ef&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl) (Also, there is a [new book](https://www.amazon.com/dp/0593994825?&linkCode=ll2&tag=achronicvoice-20&linkId=7064984b013540b2948d5452580802ca&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)!)
“Laughter is the best medicine. Crying is the affordable generic brand.” — [Marianne Williamson](https://www.amazon.com/stores/Marianne-Williamson/author/B00455T7KU?ccs%5Fid=90895bd6-cfc6-477e-912c-ca78c5f01d1d&linkCode=ll2&tag=achronicvoice-20&linkId=47275c0674c26daf02f9545f07a465b6&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“There cannot be a stressful crisis next week. My schedule is already full.” — [Henry Kissinger](https://www.amazon.com/stores/Henry-Kissinger/author/B00MC1YV4G?ccs%5Fid=7ca4fd90-835a-4faa-aae7-8c0e5e51ca0c&linkCode=ll2&tag=achronicvoice-20&linkId=8c6bceacf00d35f713127cf12c517111&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“I try to take one day at a time, but sometimes several days attack me at once.” - Jennifer Yane
“I love sleep. My life has the tendency to fall apart when I’m awake, you know?” — [Ernest Hemingway](https://www.amazon.com/s?k=Ernest+Hemingway&crid=2XWOKW6BV3D9O&sprefix=ernest+hemingway%2Caps%2C418&linkCode=ll2&tag=achronicvoice-20&linkId=70009a16f60e461b7f644dbd90da9ed9&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl) (**[Read related post here.](https://achronicvoice.com/wasting-time-sleep/)**)
“This too shall pass. It may pass like a kidney stone, but it will pass.” – Unknown
“I swear if I have to go through any more character development, my character is going to develop into a villain.” — Unknown
“I must have been pretty badass in my previous life to accrue this much bad karma.” — Sheryl Chan (A Chronic Voice)
“Be careful about reading health books. You may die of a misprint.” — [Mark Twain](https://www.amazon.com/stores/Mark-Twain/author/B000APWHJ2?ccs%5Fid=dfb3d8f5-f19d-412e-84a6-2cee9126f804&linkCode=ll2&tag=achronicvoice-20&linkId=07e20df35b51afc5690a9a291c593b7c&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
Read Related Posts:
- [Tell Me You’re Chronically Ill Without Telling Me You’re Chronically Ill (Chronic Illness Memes)](https://achronicvoice.com/chronic-illness-memes/)
- [A Roundup of Biggest Pain Flare Triggers (from 40 People with Chronic Illness)](https://achronicvoice.com/pain-flare-triggers/)
- [Chronic Stress, the Silent Assassin](https://achronicvoice.com/chronic-stress-silent-assassin/)
- [Uplifting Activities to Do While Recovering in Bed](https://achronicvoice.com/uplifting-activities-to-do-while-recovering-in-bed/)
- [12 Lessons on Mindfulness (or ‘How to Relax’ by Thich Nhat Hanh)](https://achronicvoice.com/lessons-on-mindfulness-thich-nhat-hanh/)
## Quotes on Grief, Loss & Sorrow
“Grief, like chronic pain, comes and goes. It is the ocean, and I am the shore. I will be broken, but there I remain.” - Sheryl Chan, A Chronic Voice (**[Read the post here.](https://achronicvoice.com/chronic-illness-life-lessons-accident-bird/)**)
“For of all sad words of tongue or pen, the saddest are these: ‘It might have been.’” — [John Greenleaf Whittier](https://www.amazon.com/dp/B0091HYTAK?&linkCode=ll2&tag=achronicvoice-20&linkId=caa447e1d65b7f80be9053705ba3fe1e&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl) (**[Read the post here.](https://achronicvoice.com/sick-girls-diary-wish-old-person/)**)
“We think that death is an absence, when in fact it's a secret presence.” — [Valérie Perrin, Fresh Water for Flowers](https://www.amazon.com/dp/1609456769?&linkCode=ll2&tag=achronicvoice-20&linkId=c7d41d104481e470338db6329b3e620e&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“When it comes, it comes. When it goes, it goes. But sit with it, and you’ll be okay.” - Sheryl Chan, A Chronic Voice (**[Read the post here.](https://achronicvoice.com/chronic-illness-life-lessons-accident-bird/)**)
“It wasn’t my day. My week. My month. My year. My life. God damn it.” — [ Charles Bukowski, Pulp: Charles Bukowski's Final Hardboiled Noir Comedy – Lady Death, Aliens, and the Absurd](https://www.amazon.com/dp/0876859260?&linkCode=ll2&tag=achronicvoice-20&linkId=70573e2cc91a145622023cfcb70d40df&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“I tried to drown my sorrows, but the bastards learned how to swim, and now I am overwhelmed by this decent and good feeling.” — [Frida Kahlo](https://www.amazon.com/dp/3836594854?&linkCode=ll2&tag=achronicvoice-20&linkId=81aaa6d50f0f2a25a205db7e1c2ef8d0&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” — [Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors](https://www.amazon.com/dp/0312420137?&linkCode=ll2&tag=achronicvoice-20&linkId=73a0b34b59860112e1da62a994bf7528&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Grief turns out to be a place none of us know until we reach it.” — [Joan Didion, The Year of Magical Thinking](https://www.amazon.com/dp/1400078431?&linkCode=ll2&tag=achronicvoice-20&linkId=91512f8b93d39200e4960dd7bafea9be&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Micro joys are how you survive macro grief.” — [Glo Atanmo (@glographics)](https://www.instagram.com/glographics)
“The moon is proof
you can be broken in phases
and still pull oceans toward your soul” — Found via [@TheSoulShadow](https://x.com/TheSoulShadow/status/2003399730995274011)
Read Related Posts:
- [A Car Accident & A Song Gone Silent (How Life Lessons from Chronic Illness Tide Me Through)](https://achronicvoice.com/chronic-illness-life-lessons-accident-bird/)
- [What It Feels Like to be Suddenly Disabled](https://achronicvoice.com/suddenly-disabled/)
- [Sometimes, Physical Pain Isn’t the Worst Part About Chronic Illness](https://achronicvoice.com/worst-part-about-chronic-illness/)
- [Today is Not a Good Day to Make Decisions (and That’s Okay)](https://achronicvoice.com/today-is-not-a-good-day/)
- [12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?)](https://achronicvoice.com/visible-evidence-invisible-illness/)
## Quotes on Friendships & Relationships
“Be your own best friend. Never ever, put yourself down.” — [Paulo Coelho](https://www.amazon.com/stores/Paulo-Coelho/author/B000AQ3HB8?ccs%5Fid=16aefa44-e12b-481b-a62a-04e77e5431ca&linkCode=ll2&tag=achronicvoice-20&linkId=4326a5deb164e6b831a05f39f907c5b2&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Don’t walk in front of me, I may not follow. Don’t walk behind me, I may not lead. Walk beside me and be my friend.” — [Albert Camus](https://www.amazon.com/stores/Albert-Camus/author/B000AQ541E?ccs%5Fid=7ff5caf8-51ce-451d-bc34-5cd3da106dd2&linkCode=ll2&tag=achronicvoice-20&linkId=5594492b21d25646bb8d79f01869348a&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“I no doubt deserved my enemies, but I don't believe I deserved my friends.” — [Walt Whitman](https://www.amazon.com/dp/B00IMJ9JB2?&linkCode=ll2&tag=achronicvoice-20&linkId=e4a2ca06b7391ab81b3d7e15fb898f9e&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Never explain - your friends do not need it and your enemies will not believe you anyway.” — [Elbert Hubbard](https://www.amazon.com/dp/B0CYCG22Z1?&linkCode=ll2&tag=achronicvoice-20&linkId=b1b8122bef22492813c22df955d588e0&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Not everyone is going to love you. Most people don't even love themselves.” — Unknown
“When people allow you to know about their pain and talk about it, take your shoes off. It’s a holy place. Be humble, be kind when someone shows you vulnerability.” - Amani Albair
“How lucky am I to have something that makes saying goodbye so hard.” ― [A. A. Milne, The Complete Tales of Winnie-The-Pooh](https://www.amazon.com/dp/0525457232?&linkCode=ll2&tag=achronicvoice-20&linkId=1cde0f47ceb0889ed3b2e64ee1e29c90&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
Read Related Posts:
- [7 Ways to Be a Better Friend to Someone with a Chronic Illness (and 3 Things You Should Never Do)](https://achronicvoice.com/better-friend-chronic-illness/)
- [Dating with Chronic Illness (and What I’ve Learned)](https://achronicvoice.com/dating-with-chronic-illness/)
- [Disability & Sex: Disabled People are Not Automatically Bad Sexual or Romantic Partners](https://achronicvoice.com/disability-and-sex/)
- [How to Set Healthy Boundaries in Your Relationships with Chronic Illness](https://achronicvoice.com/healthy-boundaries-relationships-chronic-illness/)
- [How to Have a Healthy Relationship with Your Body (Even with Chronic Illness)](https://achronicvoice.com/healthy-relationship-with-body-chronic-illness/)
- [What’s it Like to be a Caregiver for a Chronically Ill Loved One (The Challenges & Rewards)](https://achronicvoice.com/caregiver-chronically-ill-loved-one/)
## Quotes from Poems, Books & Stories
“You are human being. So called for a reason. Not human doing. Just you being Is wonder enough to make heaven fall still. You are miracle.” - Thuli Zuma (**[Read the post.](https://achronicvoice.com/poem-on-miracles-thuli-zuma/)**)
“Instead of asking yourself, ‘What can I know?’ ask yourself, ‘What, at this moment, am I meant to know?’” — [W. H. Auden](https://www.amazon.com/dp/0679731970?&linkCode=ll2&tag=achronicvoice-20&linkId=0299181898754c27e0a017dde478176e&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“What is the bravest thing you’ve ever said?”, asked the boy. “Help”, said the horse. “Asking for help isn’t giving up. It’s refusing to give up.” ― [Charlie Mackesy, The Boy, the Mole, the Fox and the Horse](https://www.amazon.com/dp/0063435608?&linkCode=ll2&tag=achronicvoice-20&linkId=8e159ebbe6741b0e33b9c4e02530e596&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
“Were all stars to disappear or die, I should learn to look at an empty sky And feel its total dark sublime, Though this might take me a little time.” ― [W. H. Auden](https://www.amazon.com/dp/0394403649?&linkCode=ll2&tag=achronicvoice-20&linkId=7bb28ede8117c5cbb7859a77003c84d4&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
Read Related Posts:
- [It’s Just One of Those Nights (Poetry on Steroids)](https://achronicvoice.com/one-of-those-nights-poetry-steroids/)
- [Just Breathing is Enough For Today](https://achronicvoice.com/just-breathing-enough-today-poem/)
- [Book Recommendations for Spoonies (but You’re All Invited, Too!)](https://achronicvoice.com/book-recommendations-spoonies/)
- [Book Recommendations for Spoonies: Part II](https://achronicvoice.com/book-recommendations-spoonies-2/)
- [Book Recommendations for the Chronically Ill: Part III](https://achronicvoice.com/book-recommendations-3-chronically-ill/)
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### Antiphospholipid Syndrome Diagnosis: The A to Z Guide as a Patient
URL: https://achronicvoice.com/antiphospholipid-syndrome-diagnosis-a-to-z-guide/
Last updated: 2026-05-11T12:09:40.000Z
## An Introduction to This Antiphospholipid Syndrome Resource Guide
If you've just received an Antiphospholipid Syndrome diagnosis, you're probably unsure of where to start, and might be a little frightened by the prognosis. I was the same when I was first diagnosed with Antiphospholipid Syndrome (APS) at 14, and subsequently [**developed DVTs (deep vein thrombosis) and a Pulmonary Embolism (PE) at 17**](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/). There may be some information about Antiphospholipid Syndrome from medical sources online, but patient tips, stories and life experiences are fairly lacking.
For those of you who’ve never heard of Antiphospholipid Syndrome (APS), I don’t blame you. It’s a rare blood clotting disorder that's seldom discussed in the media. It did get a little bit of limelight during the pandemic, as [COVID patients suffered from hypercoagulation](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7752689/) as a symptom (van der Linden, 2020). Although it’s an autoimmune disease that affects the blood, [Antiphospholipid Syndrome can manifest in other parts of the body](https://www.sciencedirect.com/science/article/abs/pii/S0011502903001706) such as the brain, lungs, heart, kidneys, gastrointestinal system, and more (Gezer, 2003).
This is an A to Z guide for those with an Antiphospholipid Syndrome diagnosis. Over time, I aim to build up more resources about APS, with this serving as a main reference page. Let me know if you think I’ve missed anything out, or if something should be added in or amended. Let's work together to make this a useful patient resource!
---
\*Disclaimer: This blog and page is meant for educational purposes, and is based on my personal experiences as a patient. **I am not a doctor, and nothing on this website should be substituted for medical advice.** Please consult your own doctor before changing or adding **any** new treatment protocols. This page may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our **[Privacy Policy](https://achronicvoice.com/privacy-policy/)** page for more information. Thank you!
Changelog:
- **23 May 2025**: Replaced link from Penn Medicine (2022) to Jaffer and Bragg (2003) as the previous link is no longer available.
- **17 Jan 2025**: Replaced link from Dickmann et al. (2001) to Lindley et al. (2022) under “African Americans” section, as the previous paper is no longer available.
[Subscribe for More](#/portal/)
---
### How to Use This Antiphospholipid Syndrome Diagnosis A to Z Guide
This guide can be read as standalone sections in any alphabetical order - just do a search or skip to whichever section you’re looking for keywords in. An alphabetical menu can be found at the end of each section for easier navigation.
I have separated certain topics into their own posts, such as medications, research and women's health, as they truly need an entire post of their own. I have included these links where appropriate. I am currently also doing research into APS and food, and plan to write a mini series that revolve around the topics of herbs, vegetables, diet and more. I will update this A to Z guide as we go along, and you can find the changes in the changelog when I do.
Audio will be added over time and will be split up by alphabet, and can be found at the beginning of each section. If there are other accessibility features that you think might be helpful - just let me know in the comments section.
### How to Support Me & My Advocacy Work
I have been working on this resource on and off over a few years. It truly is a work-in-progress, as there are still many related topics I’d like to include, and also to expand upon. But at some point, you need to just release it into the wild, whilst making improvements along the way - hopefully with other patient input and insights as well.
I have spent hundreds, if not thousands of hours on this resource guide, as well as other articles on this website. If you like what I do and would like to support me, you can buy me a cup of coffee (I do drink too much coffee, this is true 😉), or commit to a monthly contribution by signing up for a paid subscription!
[Feed Sheryl Coffee Here](https://achronicvoice.com/#/portal/support)
Read Related Posts in the Antiphospholipid Syndrome Diagnosis Series:
- [Latest Research on Antiphospholipid Syndrome (2024 Edition)](https://achronicvoice.com/latest-research-on-antiphospholipid-syndrome/)
- [Pregnancy, Miscarriage & Women’s Health in Antiphospholipid Syndrome](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/)
- [The Lowdown on Medications and Antiphospholipid Syndrome (Warfarin, Enoxaparin, DOACs, NSAIDs & More)](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/)
- [How Does Antiphospholipid Syndrome Affect The Body? (Beyond the Blood to Major Organs)](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/)
- [The Annoying Thing About Living with Antiphospholipid Syndrome (My Personal Experiences)](https://achronicvoice.com/living-with-antiphospholipid-syndrome-personal-experiences/)
- [An Experience from Hell: Pulmonary Embolism, DVTs & Antiphospholipid Syndrome](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)
- [What it Feels Like to be Refused Treatment by a Hospital’s A&E / ER](https://achronicvoice.com/refused-treatment-hospital/)
Pin to Your Antiphospholipid Syndrome Diagnosis Boards:
## A is for Antiphospholipid Syndrome, Anticoagulants & The 2023 ACR/EULAR APS Criteria
### Antiphospholipid Syndrome
Well, of course we need to start with Antiphospholipid Syndrome (APS) itself! So what is APS, exactly? [According to the National Heart, Lung, and Blood Institute](https://www.nhlbi.nih.gov/health/antiphospholipid-syndrome) (NHLBI) (2022a):
> “Antiphospholipid syndrome (APS) is an autoimmune disorder that causes abnormal blood clots to form. Autoimmune disorders occur when your body’s immune system makes antibodies that attack and damage your own tissues or cells.”
Another surprising thing to note is that whilst APS is usually associated with blood clotting, sometimes it can also lead to bleeding. [According to Ahluwalia and Sreedharanunni (2017)](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5280868/):
> "The bleeding may be related to severe thrombocytopenia, platelet function disorders, factor VIII inhibitor, prothrombin deficiency and rarely to acquired deficiency of factors VII, X and XI."
You can [**learn more about the systemic implications of Antiphospholipid Syndrome in this post**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#systemic).
[Laboratory tests used to identify patients who have Antiphospholipid Syndrome](https://www.sciencedirect.com/science/article/abs/pii/S0896841114000080) are: anticardiolipin (aCL), and/or anti-β2GPI, and/or lupus anticoagulant (LA) assays. A laboratory test needs to be positive on at least two occasions, separated by 12 weeks, to be considered diagnostic for Antiphospholipid Syndrome (Gómez-Puerta & Cervera, 2014).
Also Read: [Anticardiolipin](#anticardiolipin) | [anti-β2GPI](#AntiB2GPI) | [Lupus Anticoagulant](#LA)
### Anticoagulants
There are many types of [anticoagulant medications](https://my.clevelandclinic.org/health/treatments/22288-anticoagulants), which work by preventing the blood from clotting (Cleveland Clinic, 2022a). In general, patients who have had thrombotic events before need to be on warfarin with an even higher target INR range.
[This is a great paper that covers the different types of anticoagulants in detail](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4715843/) (Nutescu et al., 2016), should you be interested to learn more. [**I have also written more about medications and drugs used in relation to APS in this post**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/).
Also Read: [Coumarin](#coumarin) | [Vitamin K](#SectionK)
### The 2023 ACR/EULAR APS Criteria
The [2023 American College of Rheumatology (ACR) / European Alliance of Associations for Rheumatology (EULAR) APS criteria consists of four phases](https://ard.bmj.com/content/82/10/1258). These include a combination of surveys, literature reviews, criteria reduction, criteria definition, and validation, with actual patient scenarios for guidance (Barbhaiya et al., 2023).
It was formulated to address some of the limitations of the previous Sapporo criteria(s), and serves to narrow the heterogeneity gap of patients who are positive for antiphospholipid antibodies (aPLs). The 2023 ACR/EULAR APS Criteria has an increased specificity compared to the 2006 revised Sapporo criteria (99% versus 86%), although it also has a lower sensitivity (84% versus 99%) (Barbhaiya et al., 2023). The 2023 ACR/EULAR APS Criteria still needs to be fully validated for some subsets of patients as well, [such as Lupus patients who are positive for antiphospholipid antibodies](https://ard.bmj.com/content/83/Suppl%5F1/542.2) (Koliadenko & Iaremenko, 2024).
[According to Yang et al. (2024)](https://www.sciencedirect.com/science/article/pii/S0896841124000714), who did a small study on a cohort of Chinese patients:
> “Revisions to clinical criteria included refined risk stratification for venous thromboembolism (VTE) and cardiovascular disease (CVD), a clarified definition of microvascular thrombosis, a redefined understanding of pregnancy morbidity, and heightened consideration of cardiac valve disease and thrombocytopenia. The introduction of these new criteria helps identify patients who were previously only diagnosed as “probable APS”.”
Based on the 2023 ACR/EULAR APS criteria, Yang et al. (2024) were able to diagnose an additional 9 patients with Antiphospholipid Syndrome, in a cohort of 965 patients.
#### Classification vs Diagnostic Criteria
Favaloro et al. (2024) makes an emphasis on the importance of [differentiating classification from diagnostic criteria](https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0043-1776318) as well:
> “In other words, the “classification” criteria establish a finite list of clinical and laboratory parameters that can be used to identify some “definite” APS manifestation for inclusion in future studies, but a broader list of both clinical and laboratory criteria are available to help diagnose APS.”
> ..... “Therefore, diagnostic criteria are a set of signs, symptoms, and tests for use in routine clinical care to guide the clinical decision making in individual patients. Classification criteria are instead standardized definitions used primarily to create well-defined, relatively homogeneous cohorts of patients for clinical research.”
In short, the point that Favaloro et al. (2024) makes is that whilst APS diagnoses can be made by clinicians based on the most recent 2023 ACR/EULAR APS criteria, other APS manifestations should be taken into consideration as well. This is especially crucial when the patient presents with non-criteria APS manifestations.
Also Read: [Antiphospholipid Antibodies](#APLS) | [Non-Criteria APS](#NCAPS) | [2006 Revised Sapporo Criteria](#sapporo)
### Some other keywords under ‘A’ and APS are:
1. **Acute Pain** \- A blood clot or haemorrhage can be cause for acute pain anywhere in the body, and I've had the misfortune of experiencing both on numerous occasions. These events can be life-threatening and require immediate medical attention. Head to the A&E/ER right away even if you're unsure of the exact cause, and never 'wait it out' - this was my biggest regret in life.
2. **Alcohol** \- People who have recently received an Antiphospholipid Syndrome diagnosis often [wonder if they can still drink alcohol](https://www.medicalnewstoday.com/articles/blood-thinners-and-alcohol) (Caporuscio, 2021). Usually a [maximum of two glasses of alcohol](https://www.uptodate.com/contents/warfarin-beyond-the-basics) is allowed, as [alcohol is a blood thinner that stays in the bodily system](https://americanaddictioncenters.org/alcohol/how-long-in-system) for a short duration of time (Hull et al., 2024; Thomas, 2024).
Having said that, this does not take into account your specific comorbidities, risk factors, liver function, medication interactions and more. So please check with your own doctor first before consuming alcohol.
There have also been [studies that show associations with alcoholic liver disease, and the development of antibodies](https://gut.bmj.com/content/49/6/852) targeting complexes between oxidised cardiolipin and β2-GP1, which might account for higher levels of antiphospholipid antibodies in the individual (Rolla et al., 2001).
Read Related Posts:
- [Drink Pure Wine Review (A Product That Excites Me as a Person with Chronic Illness)](https://achronicvoice.com/drink-pure-wine-review/)
- [We Want to Have Fun Just Like You, But Here’s What it Takes](https://achronicvoice.com/we-want-have-fun-just-like-you-but-heres-what-takes/)
1. **African Americans** – In relation to the CYP2C9 gene, which plays a role in warfarin metabolism, it has been noted thus far that the [CYP2C95 allele has been found in 5 out of 110 African-American APS patients](https://www.nature.com/articles/6500182), and CYP2C96 in around 0.6% of African-American APS patients as well. Neither have been yet found in Asian or Caucasian patients (Takahashi & Echizen, 2003).
And according to Lindley et al. (2022), “The [cytochrome P450 2C9\*5 (CYP2C9\*5) allele is found almost exclusively in populations of African ancestry](https://ascpt.onlinelibrary.wiley.com/doi/10.1002/cpt.2549), and in vitro studies suggest CYP2C9\*5 is associated with reduced clearance of warfarin”. What this means is that carriers of this genetic variant may require more warfarin than average. More investigation is still required, however, in order to determine its exact effects and functionalities.
Also Read: [Asians](#asians) | [Caucasians](#caucasians) | [Chinese Patients](#chinese) | [CYP2C9 Gene](#CYP2C9) | [Genes](#genes) | [Warfarin](#warfarin)
1. **aGAPSS** \- The [Adjusted Global AntiphosPholipid Syndrome Score (aGAPSS)](https://pmc.ncbi.nlm.nih.gov/articles/PMC7402528/) was developed to identify high-risk APS patients, and consists of: hyperlipidaemia (3 points), arterial hypertension (1 point), anticardiolipin antibodies (5 points), anti-β2 glycoprotein-I antibodies (4 points), and lupus anticoagulant (4 points) (Radin et al., 2019).
2. **Alternative Therapies** \- I don’t deny the usefulness of holistic approaches to health and wellness, and some alternative and complementary therapies can be useful when adapted to an individual. Having said that, people who have an Antiphospholipid Syndrome diagnosis need to be cautious of such therapies, because many of them involve touch or dietary changes, which can lead to bruising and bleeding. These include massages, chiropractic adjustments, herbs and more.
Also Read: [Cupping, Traditional Chinese Medicine (TCM) & Chiropractor](#cupping) | [Herbs](#herbs) | [Massages](#massages)
Read Related Posts:
- [Floatation Therapy: Did it do Anything for My Chronic Pain?](https://achronicvoice.com/floatation-therapy-chronic-pain-review-palm-avenue-float-club-singapore/)
- [Resources & Therapies for Pain After Major Knee Surgery](https://achronicvoice.com/resources-therapies-pain-after-major-knee-surgery/)
- [Tips & Tools to Help Regain Independence with a Disability or Chronic Illness](https://achronicvoice.com/independence-disability-chronic-illness/)
1. **[Andexanet Alfa](https://www.ncbi.nlm.nih.gov/books/NBK519499/)** \- This is a factor Xa protein used to reverse the effects of apixaban and rivaroxaban (blood thinning drugs used by patients), during life-threatening situations where there may be uncontrolled bleeding (Reed et al., 2023). **[Learn more about Factor Xa and Andexanet Alfa here.](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#FactorXa)**
2. **Anti-Beta2 Glycoprotein 1 (anti-ß2 GPI)** \- Beta-2-Glycoprotein I (β2GPI) is a soluble blood protein, and has many functions, including haemostasis (blood clotting process).
[According to McDonnell et al. (2020)](https://www.sciencedirect.com/science/article/pii/S0268960X19300268):
> “Indirectly, β2GPI can exert an anticoagulant effect through downregulation of thrombin generation whilst its indirect coagulant effect is shown through mechanisms including inhibiting activation of protein C and disrupting the anticoagulant Annexin V shield.”
APS patients present antibodies, such as anti-ß2 GPI, that can dysregulate this process. Two isotypes found in anti-β2 GPI – IgG and IgM – are one of the diagnostic criteria for an Antiphospholipid Syndrome diagnosis. Whilst the IgA isotype is not currently used for diagnosis, there has been growing interest and research in it, especially for seronegative APS patients. In one study, there was a [strong association for IgA and arterial thrombosis](https://onlinelibrary.wiley.com/doi/abs/10.1002/art.38131) (Murthy et al., 2013). **[Learn more about thrombin and the coagulation cascade here.](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#thrombin)**
Also Read: [2023 ACR/EULAR APS Criteria](#EULAR) | [Coagulation](#coagulation) | [Non-Criteria/Seronegative APS](#NCAPS)
1. **Anticardiolipin Antibodies** \- [Cardiolipins are phospholipids](https://www.urmc.rochester.edu/encyclopedia/content?contenttypeid=167&contentid=cardiolipin%5Fantibody), and antibodies produced against them can lead to blood clots (University of Rochester Medical Center \[URMC\], n.d.-a).
Whilst research on antiphospholipid antibodies (aPLs) in relation to COVID-19 are still underway and not fully understood, interestingly, [anticardiolipin antibodies (aCLs) have shown some correlations](https://www.nature.com/articles/s41598-022-15969-y). Having said that, it is important to note that infections in themselves can also trigger a rise in antiphospholipid antibodies, and the pathways of blood clotting might differ from that of a patient who actually has an Antiphospholipid Syndrome diagnosis (Bertin et al., 2022).
Also Read: [COVID-19](#COVID19) | [Infections](#infections) | [Phospholipids](#phospholipids)
1. **Antiphospholipid Antibodies** \- The lupus anticoagulant, anticardiolipin and anti-ß2GPI antibodies are collectively referred to as antiphospholipid antibodies. Note that this is different from the autoimmune disease, Antiphospholipid Syndrome, itself. [According to Green (2022)](https://pmc.ncbi.nlm.nih.gov/articles/PMC9391091/):
> These antibodies attack cells, cellular receptors, and hemostatic proteins either alone or in complexes with phospholipid-binding proteins.”
This triggers a sequence of events that can lead to a blood clot. About [50% of Systemic Lupus Erythomatosus (SLE) patients also possess antiphospholipid antibodies](https://www.hopkinslupus.org/lupus-info/lupus-affects-body/antiphospholipid-antibodies/) (Johns Hopkins Lupus Center, n.d.-b).
Also Read: [Lupus & Lupus Anticoagulant](#SectionL) | [Phospholipids](#phospholipids)
1. **Antiplatelet Drugs** \- These are used to prevent platelets from sticking together, which decreases your body’s ability to form blood clots. Aspirin is one of the most commonly used antiplatelet drugs. These work differently from anticoagulants, even though they both prevent blood clotting. As per Cleveland Clinic (2022c):
> “Antiplatelets interfere with the process of platelets binding together. Anticoagulants, also called blood thinners, interfere with proteins in your blood that are involved with clotting.”
For a more in-depth explanation, **[read this post on medications and Antiphospholipid Syndrome](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/)**.
Also Read: [Blood Clots & Bleeding](#SectionB) | [Coagulation](#coagulation) | [Platelets](#platelets)
1. **[Antiphosphatidylserine / Prothrombin Antibodies](https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0040-1705115)** \- Studies have shown the correlation of antiphosphatidylserine / prothrombin (aPS/PT) antibodies with a higher association of clinical manifestations of Antiphospholipid Syndrome, and that it can be considered as a robust test for further investigation in patients with suspected APS (Radin et al., 2020).
2. **[Apixaban](https://www.ncbi.nlm.nih.gov/books/NBK507910/) (Brand Name: Eliquis)** \- This is a direct oral anticoagulant (DOAC) originally approved for atrial fibrillation (Afib) patients to reduce the risk of strokes and blood clots. It was later approved to treat DVTs and PEs (pulmonary embolisms) as well (Agrawal et al., 2024). **[Learn more about apixaban and DOACs here.](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#DOACs)**
3. **Asians** \- [According to Takahashi and Echizen (2003):](https://www.nature.com/articles/6500182)
> “Anecdotal observations indicated that the maintenance doses of warfarin obtained from Asians (ie, 3.4 and 3.3 mg/day for Japanese12,13,14 and Chinese,32 respectively) are 20–50% lower than those obtained from Caucasian (ie, 4.1–6.7 mg/day).”
This may be due to the fact that the Asians in the study did not possess the CYP2C9\*2 variant, which is more commonly found in Caucasian populations. This variant, and also the CYP2C9\*3 variant, both contribute to decreased metabolism of warfarin.
Also Read: [African Americans](#AfricanAmericans) | [Caucasians](#caucasians) | [Chinese Patients](#chinese) | [CYP2C9 Gene](#CYP2C9) | [Genes](#genes) | [Warfarin](#SectionW)
1. **Aspirin / Acetylsalicylic Acid** \- This is an NSAID (which all have anticoagulatory effects), and some patients take it for other medical conditions such as heart problems. Aspirin is usually not strong enough of a blood thinner for those with Antiphospholipid Syndrome however, especially for those of us who have had DVTs and the likes before. It only [reduces the risk of first arterial, but not venous thrombotic events](https://www.frontiersin.org/journals/cardiovascular-medicine/articles/10.3389/fcvm.2021.715878/full) in people with antiphospholipid antibodies (Pastori et al., 2021). **[Read this post for more information on NSAIDs, including aspirin](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#NSAIDs)**.
Pin to Your Antiphospholipid Syndrome Diagnosis Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## B is for Blood Clots & Bleeding
Blood clots and bleeding are the bane of Antiphospholipid Syndrome. Either extreme can be cause for alarm, should they go out of control.
### Blood Clots
The process of blood clotting is very important, as it helps your body to stop bleeding when you injure yourself, whether externally or internally. A blood clot is medically known as a ‘thrombus’, and a [thrombosis](https://www.ncbi.nlm.nih.gov/books/NBK538430/) is “a blood clot within blood vessels that limit the flow of blood” (Ashorobi et al., 2024).
[Blood clots become dangerous](https://www.mayoclinic.org/symptoms/blood-clots/basics/causes/sym-20050850) when they break off to lodge in other places within the body, such as in the heart, brain or lung, and patients with Antiphospholipid Syndrome are at a higher risk (Mayo Clinic, 2023a). Many APS patients need to go on anticoagulation therapy in order to prevent blood clots, and are usually started on warfarin, a vitamin K antagonist. Patients who have experienced any blood clotting events before are usually medicated with a higher dose as well.
Also Read: [Coagulation](#coagulation) | [Embolus](#embolus) | [Vitamin K](#SectionK)
Read Related Posts:
- [How Does Antiphospholipid Syndrome Affect The Body? (Beyond the Blood to Major Organs)](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/)
- [The Lowdown on Medications and Antiphospholipid Syndrome (Warfarin, Enoxaparin, DOACs, NSAIDs & More)](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/)
### Bleeding
A little known fact is that APS patients can also bleed from the disease itself in rare circumstances. [According to Kubisz et al. (2021)](https://www.intechopen.com/chapters/76760):
> "The acquired coagulopathy caused by the aPL, particularly by lupus anticoagulant and anticardiolipin antibodies, might be occasionally manifested as a hemorrhagic syndrome with various clinical severity."
And from [Pazzola et al. (2015)](https://link.springer.com/article/10.1007/s11926-014-0481-0):
> "Antiphospholipid antibody-positive patients can develop bleeding due to capillaritis, microthrombosis, antiprothrombin antibodies, thrombocytopenia, and/or excessive antithrombotic therapy."
Bleeding can range from mild to severe, and occur in various organs such as the brain or stomach. The interaction between antiphospholipid antibodies and the body is heterogeneous, with many possible factors at play. The management of APS during such events are even more complex, as both blood clotting and bleeding risks need to be managed.
[**Read about the systemic implications of APS in this post**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#systemic)**.**
Also Read: [Antiphospholipid Antibodies](#APLS) | [Stop Bleed First Aid](#StopBleed) | [Surgery](#surgery)
### Other Terms for ‘B’ in Relation to APS are:
1. **Birth Control** \- There are a few different types of birth controls, which mainly contain the hormones oestrogen, or progestin, or both. [Oestrogen is known to cause blood clots](https://www.pennmedicine.org/specialties/hematology/blood-clotting-disorders), and is best avoided in all forms (Penn Medicine, n.d.). Whilst you may choose to be on birth control to prevent conception, sometimes women with APS need to go on them due to recurrences of ovarian cyst ruptures, which is a life-threatening event. **[Learn more about birth control here.](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#BirthControl)**
Also Read: [Free Fluid](#FreeFluid) | [Etonogestrel](#etonogestrel) | [Paediatric APS](#paediatric)
1. **Blood Disorder** \- Antiphospholipid Syndrome is but one of many different types of blood disorders. You can [view more blood clotting and bleeding disorders in this list from Cleveland Clinic](https://my.clevelandclinic.org/health/diseases/21545-blood-disorders) (2022d).
Also Read: [Haemophilia](#haemophilia) | [Factor V Leiden](#FactorV)
1. **Blood Tests** \- As with any other autoimmune disease and/or blood disorder, your doctor will monitor your blood closely for things such as inflammatory markers and full blood count. For patients with an Antiphospholipid Syndrome diagnosis, one of the most, if not the most important blood test is the one for [PT/INR (International Normalised Ratio)](https://medlineplus.gov/lab-tests/prothrombin-time-test-and-inr-ptinr/) (MedLinePlus, 2024).
Also Read: [INR](#INR) | [Snake Venom](#SnakeVenom)
1. **Bone Loss** \- [Long-term warfarin therapy can lead to bone density loss](https://pmc.ncbi.nlm.nih.gov/articles/PMC6955144/), as it antagonises vitamin K – an important vitamin for bone health (Rodríguez-Olleros Rodríguez and Díaz Curiel, 2019). **[Learn more about musculoskeletal manifestations here.](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#musculoskeletal)**
Also Read: [Calcium](#calcium) | [Vitamin D](#VitaminD) | [Vitamin K](#SectionK) | [Supplements](#supplements) | [Warfarin](#SectionW)
1. **Brain Fog** \- See **[Cognitive Function](#cognitive)**.
2. **Broccoli** \- This may sound somewhat random, but I’ve personally found broccoli to be very high in vitamin K. Often 2 to 3 stalks of broccoli can drop my INR back down to baseline, so I balance this with blood thinning foods such as salmon carefully. Call it a food strategy.
3. **Bruises** \- It’s easy to get bruises when you’re on an anticoagulant medication; it can be alarming especially in the beginning. It’s important to monitor all signs of bruising, especially the bigger ones. You will need to stop all contact sports, due to the high risk of bruising which increases the chances of DVTs.
4. **Brushing Your Teeth** \- Ever brushed your teeth a little too hard and have your gums bleed? It’s best to use a toothbrush with soft bristles, or an electric toothbrush that has a sensitivity pressure warning. I’ve tried a couple and [this is the electric toothbrush I currently use and like](https://www.amazon.com/dp/B09LD7WRVS?th=1&linkCode=ll1&tag=achronicvoice-20&linkId=c471516e1d02c0270028b8e10ae99bd8&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl), as the price is decent, the bristles are small enough and it doesn’t clean with a vengeance.
Also Read: [Diet](#diet) | [Green, Leafy Vegetables](#LeafyVeg) | [INR](#INR) | [Quinoa](#SectionQ) | [Sports](#sports) | [Vegetables](#vegetables)
Read Related Posts:
- [Sometimes, Physical Pain Isn’t the Worst Part About Chronic Illness](https://achronicvoice.com/pain-chronic-illness/)
- [Vitamin D & Vitamin K2: How They Boost Each Other in the Body](https://achronicvoice.com/vitamin-d-vitamin-k2/)
Pin to Your Antiphospholipid Syndrome & Rare Disease Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## C is for Coagulation, Cardiovascular Disease & Catastrophic Antiphospholipid Syndrome (CAPS)
### Coagulation
Coagulation is when the blood turns from a liquid to solid state and clots. Patients with Antiphospholipid Syndrome typically need to take anticoagulants to counteract their ‘sticky blood’, as they have an increased tendency to clot. The coagulation process is a fascinating one where lots of variables are at play, and one where researchers are still learning and discovering new things about even up to this day – such as the more recently known clotting factors – prekallikrein and high-molecular-weight kininogen.
According to Palta et al. (2014), [clotting factors can be classified into the following three groups](https://pmc.ncbi.nlm.nih.gov/articles/PMC4260295/):
 *(Source: )*
They also state that:
> “Most of the procoagulants and anticoagulants are produced by liver except factor III, IV and VIII. These proteins undergo a post translational modification (vitamin K dependent ϒ carboxylation of glutamic acid residues) which enables them to bind calcium and other divalent cations and participate in clotting cascade. Deficiency of vitamin K or administration of vitamin K antagonists (warfarin) lead to anticoagulation.”
What this means in simpler terms is that the body produces both coagulants and anticoagulants on its own through various pathways internally, and that various proteins, elements and processes are involved in the coagulation process. It also means that altering vitamin K levels in the body, whether through the use of medications, or as a result of malabsorption or nutrient deficiency, can affect this process.
**You can** [**learn more about the blood clotting process in this post**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/)**.**
Also Read: [Anticoagulants](#anticoagulants) | [Vitamin K](#SectionK) | [Sticky Blood](#StickyBlood)
### Cardiovascular Disease
Cardiovascular Disease (CVD) is a leading cause of mortality in Antiphospholipid Syndrome patients. On top of traditional risk factors, they also have thrombotic and inflammatory risk factors to contend with. [**Learn more about cardiovascular disease and APS here**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#CVD).
### Catastrophic Antiphospholipid Syndrome (CAPS)
[Catastrophic Antiphospholipid Syndrome](https://www.sciencedirect.com/science/article/abs/pii/S0896841118302488) is a rare occurrence that only occurs in 1% of APS patients, but is also the most severe manifestation of APS. It has a high mortality rate, especially if the patient has an SLE (Lupus) comorbidity. CAPS happens when multiple blood clots occur simultaneously throughout the body, which can lead to multiple organ, system and tissue failure (Cervera et al., 2018). Little is understood about the condition, although it is hypothesised to be [multifactorial in aetiology](https://academic.oup.com/rheumatology/article/63/SI/SI46/7601825), with genetic and environmental factors thrown in for good measure (Rodriguez-Pintó et al., 2024).
CAPS mostly affects women at 70%, and those who are in their forties, although it can occur at any age. Pulmonary (lung) manifestations, such as lung thrombosis and diffuse alveolar haemorrhage, occur in approximately two thirds of cases. Central nervous system (CNS) manifestations include strokes and encephalopathy, and occur in up to 56% of CAPS patients. Cardiovascular manifestations such as heart attacks and anginas can also happen, and is reported in approximately half of CAPS patients. And wait we aren’t done yet….. Skin manifestations such as livedo can also be found in 47% of CAPS patients, and it can also affect the liver, spleen, adrenal glands, reproductive organs, and just about every body part you can think of, I reckon (Rodriguez-Pintó et al., 2024).
The CAPS Registry was created by the European Forum on Antiphospholipid Antibodies, and contains a grand total of 500 CAPS patients. [Rodríguez-Pintó et al. (2016) did a study on the demographics data](https://www.sciencedirect.com/science/article/abs/pii/S1568997216302051), and found some common precipitating factors for CAPS to be events such as: infections, surgeries, malignancy, contraceptive use, pregnancy, drug use, SLE flares, trauma and more.
For more information, read the post, “[**How Does Antiphospholipid Syndrome Affect The Body? (Beyond the Blood to Major Organs)**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/)”.
Also Read: [Birth Control](#BirthControl) | [Infections](#infections) | [Haemorrhage](#haemorrhage) | [Lupus (SLE) & APS](#SLEAPS) | [Men](#men) | [Non-Criteria/Seronegative APS](#NCAPS) | [Platelets](#platelets) | [Primary APS](#PAPS) | [Secondary APS](#SAPS) | [Strokes](#strokes) | [Surgery](#surgery) | [Women](#women)
### Other Terms for ‘C’ in Relation to APS are:
1. **[Calcium](https://www.niams.nih.gov/health-topics/calcium-and-vitamin-d-important-bone-health)** \-Calcium is the most abundant mineral in the body that is needed for various functions, including bone health. Our bodies also ‘borrow’ calcium from our bones should there be a deficit, which can lead to osteoporosis (National Institute of Arthritis and Musculoskeletal and Skin Diseases \[NIAMS\], 2023).
Warfarin is a Vitamin K antagonist (VKA) that affects bone health, so calcium is generally prescribed for Antiphospholipid Syndrome patients to help counteract this. Something to bear in mind is that many calcium supplements sold over-the-counter (OTC) are combined with vitamin K, as they have a synergistic effect. Do ensure that you read carefully through the ingredients, as these can interact with warfarin.
**[Read this post for more information on vitamin K antagonists and warfarin](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#VKAs), and [this post for musculoskeletal manifestations of APS](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#musculoskeletal).**
Also Read: [Vitamin D](#VitaminD) | [Vitamin K](#SectionK) | [Omega Oils](#OmegaOils) | [Supplements](#supplements) | [Zinc](#SectionZ)
Read Related Posts:
- [Vitamin D & Vitamin K2: How They Boost Each Other in the Body](https://achronicvoice.com/vitamin-d-vitamin-k2/)
- [The Causes & Dangers of Malabsorption & An Easy Way to Get Your Nutrients](https://achronicvoice.com/malabsorption-nutrients/)
- [Oral Spray Vitamins: A Quick & Easy Way to Get Your Nutrients with Chronic Illness](https://achronicvoice.com/oral-spray-vitamins/)
1. **Caucasians** \- [According to MedLinePlus (2018)](https://medlineplus.gov/genetics/gene/cyp2c9/#conditions):
> “The two most common CYP2C9 polymorphisms in people of European ancestry are known as CYP2C9\*2 and CYP2C9\*3\. Both of these polymorphisms lead to a decrease in warfarin metabolism to such degrees that prescription doses are typically reduced by one-third and one-fifth, respectively.”
What this means is that patients of European descent tend to require a lower dosage of warfarin, if they possess these polymorphisms.
Also Read: [African Americans](#AfricanAmericans) | [Asians](#asians) | [Chinese Patients](#chinese) | [CYP2C9 Gene](#CYP2C9) | [Genes](#genes) | [Warfarin](#SectionW)
1. **CBD (Cannabidiol)** \- Can you take CBD whilst on warfarin? [According to Grayson et al. (2018)](https://pmc.ncbi.nlm.nih.gov/articles/PMC5789126/):
> “In addition to competing for enzymes in same metabolic pathway as warfarin, CBD has been demonstrated to act as a potent competitive inhibitor of all seven of its own CYP enzymes and as such could further impair the degradation of warfarin.”
What this means is that there is a potential for CBD to interact with warfarin and cause bleeding. Thus, if it’s legal where you are and you want to take CBD, work with your doctor to monitor your INR.
You also need to be consistent in intake, which sort of defeats the purpose – pain levels can [fluctuate like the weather in Rapid City, South Dakota](https://fivethirtyeight.com/features/which-city-has-the-most-unpredictable-weather/) (yes I diverged to look that up 😜) (Silver & Fischer-Baum, 2014). There are also a lot of variations in CBD oils and products, which do different things in the body.
**[Read this post for more information about warfarin and medication interactions.](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#warfarin)**
Also Read: [Bleeding](#bleeding) | [Haemorrhage](#haemorrhage) | [INR](#INR)
Read Related Posts:
- [Will Taking CBD Oil Turn Me into an Addict? (Get Your CBD Oil Facts Right)](https://achronicvoice.com/cbd-oil-facts/)
- [Why Painkillers are One of My Biggest Allies for a Decent Quality of Life](https://achronicvoice.com/painkillers-quality-life/)
- [A Roundup of Biggest Pain Flare Triggers (from 40 People with Chronic Illness)](https://achronicvoice.com/pain-flare-triggers/)
- [40 People with Chronic Illness Share Their Best Pain Management Tips (What to Do if an Unforeseen Pain Flare Hits)](https://achronicvoice.com/pain-management-tips-pain-flare/)
- [Resources & Therapies for Pain After Major Knee Surgery](https://achronicvoice.com/resources-therapies-pain-after-major-knee-surgery/)
1. **Chinese Patients** \- In a [study of 252 Chinese APS patients](https://link.springer.com/article/10.1007/s10067-017-3549-1), whilst common thrombotic events were found to be similar to those from the Euro-Phospholipid Project, lower positive rates of anticardiolipin and lupus anticoagulant antibodies were also found comparatively (Shi et al., 2017).
Asians in general also do not possess a certain allele for the CYP29C gene, which means they may require a lower maintenance dose of warfarin, as compared to caucasians. Having said that, [a systematic review and meta-analysis that studied 20 single nucleotide polymorphisms in eight genes](https://link.springer.com/article/10.1007/s40262-023-01258-y) also revealed that other polymorphisms play a role in the mean daily warfarin dose of Chinese Han patients (Zhao et al., 2023).
Also Read: [African Americans](#AfricanAmericans) | [Anticardiolipin Antibodies](#anticardiolipin) | [Asians](#asians) | [Caucasians](#caucasians) | [CYP2C9 Gene](#CYP2C9) | [Euro-Phospholipid Project](#europhospholipid) | [Genes](#genes) | [Lupus Anticoagulant](#LA)
1. **CoaguChek®** \- See **[Roche](#roche)**.
2. **Cognitive Function** \- An impact in cognitive function is preferable to saying ‘brain fog’, which often makes the experience sound overly trivial. Those who live with ‘brain fog’ know how devastating its impacts are. [Cognitive dysfunction is also another annoying feature of APS](https://link.springer.com/article/10.1007/s11926-016-0568-x) involvement in the neurological pathways, and exists on a spectrum from mild to severe (such as dementia) (Yelnik et al., 2016).
The frequency of cognitive dysfunction ranges from 19% to 40%, and includes cognitive complication with memory, executive function, visuospatial skills and visuomotor speed. APS patients can also present with psychiatric symptoms such as: psychosis, mania, depression, bipolar disorders, OCD and schizophrenia (Yelnik et al., 2016). You can **[learn more about the neurological manifestations of APS here](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#neuropsychiatric)**.
3. **Comorbidities** \- [Patients with an autoimmune disease tend to have comorbidities](https://pmc.ncbi.nlm.nih.gov/articles/PMC3150011/), meaning that they have more than one medical condition at the same time (Cojocaru et al., 2010). The overlap of these comorbidities can be complex and more often than not, patients live with chronic pain whilst waiting for proper diagnoses.
Also Read: [Lupus & Lupus Anticoagulant](#SectionL)
1. **Compression Clothing & Devices** \- If you’re stuck in bed or in a single position (such as on a flight) and can’t walk or move for a period of time, then wearing compression stockings and clothing can help to prevent the formation of blood clots.
APS patients tend to need to wear compression stockings after undergoing major surgery where they’re unable to walk about. An [intermittent pneumatic compression device](https://my.clevelandclinic.org/health/treatments/14791-intermittent-pneumatic-compression-ipc-device) is also usually used when APS patients undergo surgery that requires general anaesthesia. These are cuffs that are wrapped around your legs which inflate and deflate to help with blood circulation (Cleveland Clinic, 2023b).
You can **[find some of my recommendations for compression clothing here](https://achronicvoice.com/wound-care-what-to-wear-after-knee-surgery/#2-Compression-Socks-Gloves-for-Blood-Circulation-Pain-Relief)**, and **[check out my top tips for travelling with chronic illness and disability in this post](https://achronicvoice.com/top-tips-travelling-chronic-illness-disability/)**.
2. **COVID-19** \- As mentioned in the introduction, many COVID-19 patients suffer from hypercoagulation. Whilst they may not have the APS disorder itself, [greater than 80% had detectable antiphospholipid antibodies in their bodies](https://pmc.ncbi.nlm.nih.gov/articles/PMC7752689/) (van der Linden et al., 2020).
It is important to note that research into antiphospholipid antibodies (aPLs) and COVID-19 is still preliminary, with the need for standardisation across various research methods. At present, it is generally accepted that the [presence of aPLs in COVID-19 patients](https://www.sciencedirect.com/science/article/pii/S1568997222001768) could be a secondary symptom of the infection, with each as contributing risk factors for thrombosis (Serrano et al., 2022).
In [one study of 56 patients in France](https://www.jthjournal.org/article/S1538-7836%2822%2901602-6), 45% of them tested positive for the lupus anticoagulant (LA) (Harzallah et al., 2020). Many also experience a prolonged aPTT time, which is an indicator of a blood clotting deficiency, and [up to 91% of such patients tested positive for LA in another study](https://www.nejm.org/doi/full/10.1056/NEJMc2013656) (Bowles et al., 2020).
You can **[find out more about the latest Antiphospholipid Syndrome research in this post.](https://achronicvoice.com/latest-research-on-antiphospholipid-syndrome/)**
Also Read: [Antiphospholipid Antibodies](#APLS) | [Infections](#infections) | [Lupus & Lupus Anticoagulant](#SectionL)
Read Related Posts:
- [COVID-19 Vaccine Experiences from People with Chronic Conditions](https://achronicvoice.com/covid-19-vaccine-experiences/)
- [What It Feels Like to be Suddenly Disabled](https://achronicvoice.com/suddenly-disabled/)
- [My Recovery Time for Simultaneous Bilateral Patellar Tendon Rupture (With Lupus & Steroid Treatment)](https://achronicvoice.com/recovery-time-simultaneous-bilateral-patellar-tendon-rupture-lupus-steroids/)
- [Must Haves After Knee Surgery to Stay Comfortable in Bed](https://achronicvoice.com/must-haves-after-knee-surgery-stay-comfortable-bed/)
1. **[Coumarin](https://www.sciencedirect.com/science/article/abs/pii/B9780123864543007983)** \- Coumarins are naturally occurring compounds derived from 1,2-benzopyrone. They were first discovered in tonka beans, but can also be found in other plant products such as cinnamon, strawberries, green tea, lavender oil and more.
They are often used in perfumes and soaps in low quantities, as a stabiliser and fragrant ingredient. Although it is allowed for consumption via natural food products such as cinnamon, it is not allowed as a direct food additive due to its toxicity and anticoagulation effects (Garrard, 2014).
Warfarin is derived from coumarin, and is used to both kill rodents, and also as an anticoagulant drug for APS patients. The more science-y explanation, [according to Lu et al. (2022)](https://www.mdpi.com/1420-3049/27/13/4054):
> “Coumarin-like drugs bind to vitamin K epoxide reductase complex 1 in the liver and block the conversion of inactive oxidative vitamin K into active reducing vitamin K. Active vitamin K is involved in the effects of coagulation factors II (reducing prothrombin production), VII, IX, and X.”
An interesting conclusion from the paper as well is that their results indicated that six of the tested coumarin derivatives inhibited ADP (adenosine diphosphate)-induced platelet aggregation, and also of calcium ions. Meaning, they target various coagulation pathways.
**[Learn more about warfarin drug interactions and vitamin K antagonists in this post.](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#VKAs)**
Also Read: [Diet](#diet) | [Vegetables](#vegetables) | [Vitamin K](#SectionK)
1. **Cupping, Traditional Chinese Medicine (TCM) & Chiropractor** \- These are just a few alternative therapies that aren’t such a good idea when you live with Antiphospholipid Syndrome. Many of the herbs that are used interact with warfarin (believe me, I’ve tried).
[Cupping is a TCM treatment](https://www.ncbi.nlm.nih.gov/books/NBK538253/) that works by drawing small amounts of blood through suction ‘cups’. Apart from those who have blood disorders, cupping is also contraindicated for many other patients such as those who have cancer, organ failure or an implanted electronic device (Furhad et al., 2023).
I asked my rheumatologist about visiting a chiropractor, and to my surprise, it wasn’t my Lupus or Sjögren’s that he was worried about, but Antiphospholipid Syndrome. Even if the manipulations were to be gentler, it can still cause blood clots or minor injuries.
Also Read: [Blood Clots & Bleeding](#SectionB) | [Haemorrhage](#haemorrhage) | [Herbs](#herbs) | [Massages](#massages)
1. **CYP2C9 Gene** \- CYP2C9 Gene – The [CYP2C9 enzyme plays a major role in the metabolism of warfarin](https://medlineplus.gov/genetics/gene/cyp2c9/), and other drugs such as ibuprofen. Polymorphisms can lead to an increase or decrease in warfarin metabolism (MedLinePlus, 2018, September 1).
[According to Takahashi and Echizen (2003)](https://www.nature.com/articles/6500182):
> “Collectively, it is suggested that patients with CYP2C9 variants, particularly CYP2C9\*3 allele or a combination of CYP2C9\*2 and CYP2C9\*3 alleles would be vulnerable to above-range INRs, need more time to achieve stable warfarin dosing and longer hospitalization and have a higher risk of serious or life-threatening bleeding events than those with wild-type CYP2C9 genotype during the induction or dose-titration period of warfarin therapy.”
This means that certain patients who possess particular variants of the CYP2C9 gene might have an increased risk of bleeding whilst on warfarin, and also take longer period of time to achieve their target INR range. **[Learn more about warfarin metabolism here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#WarfarinMetabolism)**.
Also Read: [African-Americans](#AfricanAmericans) | [Asians](#asians) | [Caucasians](#caucasians) | [Chinese Patients](#chinese) | [Genes](#genes) | [Vitamin K](#SectionK)
Pin to Your Antiphospholipid Syndrome Diagnosis & Health Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## D is for DVT, Diet & Dermatologic Manifestations
### Deep Vein Thrombosis (DVT)
[DVT stands for ‘Deep Vein Thrombosis’](https://www.cdc.gov/yellow-book/hcp/travel-air-sea/deep-vein-thrombosis-and-pulmonary-embolism.html), and they can be an extremely painful consequence of Antiphospholipid Syndrome. These blood clots tend to form in a deep leg vein, but can occur anywhere in the body. If they are large enough, they can lodge in the lungs, brain or heart, and that can turn into a life-threatening situation (Reyes & Abe, 2023). [**Learn more about DVTs and other manifestations of APS in this post**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/).
Also Read: [Blood Clots & Bruising](#SectionB) | [Coagulation](#coagulation) | [‘Muscular’ Sprains](#sprains)
Read Related Posts:
- [An Experience from Hell: Pulmonary Embolism, DVTs & Antiphospholipid Syndrome](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)
- [Knee Surgery Post-Operative Care: Introduction to the Series](https://achronicvoice.com/knee-surgery-post-operative-care-introduction/)
- [Top Tips for Travelling with Chronic Illness & Disability (From a Girl Who Loves to Travel)](https://achronicvoice.com/top-tips-travelling-chronic-illness-disability/)
### Diet
The APS diet is the biggest and most confusing thing to contend with when a person receives an Antiphospholipid Syndrome diagnosis. Questions that pop up include: “Is that safe to eat whilst on warfarin?”, and “You mean I can’t eat or drink my favourite food stuff anymore?!”
I’ve been there. I remember being terrified, as I didn’t know what I could or could not eat and drink anymore. Every APS patient can react differently to the same foods as well, so what works for one person may not for another. But don’t be like me and live in denial; I continued to consume green tea in copious amounts and played contact sports, because [**there wasn’t any pain initially – until there was**](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/).
It will take a while, even years, to learn what foods are safe for consumption after an Antiphospholipid Syndrome diagnosis. I promise that it gets easier though, as you start to know how to keep your diet balanced in terms of Vitamin K and blood thinning foods. It will even become intrinsic knowledge, where you can roughly estimate what the status of vitamin K is within your body, more or less. The Antiphospholipid Syndrome diet is also a behemoth topic that requires a post of its own, and one which I will cover in greater detail in future.
Also Read: [Broccoli](#broccoli) | [Calcium](#calcium) | [Vitamin D](#VitaminD) | [Fruits](#fruits) | [Green, Leafy Vegetables](#LeafyVeg) | [Green Tea](#GreenTea) | [Juicing](#SectionJ) | [Vitamin K](#SectionK) | [Omega Oils](#OmegaOils) | [Quinoa](#SectionQ) | [Saponins](#saponins) | [Supplements](#supplements) | [Vegetables](#vegetables)
Read Related Posts:
- [Vitamin D & Vitamin K2: How They Boost Each Other in the Body](https://achronicvoice.com/vitamin-d-vitamin-k2/)
- [The Causes & Dangers of Malabsorption & An Easy Way to Get Your Nutrients](https://achronicvoice.com/malabsorption-nutrients/)
- [Dysphagia & Swallowing Problems (and How Oral Vitamin Sprays Can be of Help to You)](https://achronicvoice.com/dysphagia-oral-vitamin-sprays/)
- [Oral Spray Vitamins: A Quick & Easy Way to Get Your Nutrients with Chronic Illness](https://achronicvoice.com/oral-spray-vitamins/)
### Dermatologic Manifestations
Cutaneous (skin-related) manifestations are common and may actually be the first signs of Antiphospholipid Syndrome.
[According to Gibson et al. (1997)](https://www.sciencedirect.com/science/article/abs/pii/S0190962297802836):
> “These include livedo reticularis, necrotizing vasculitis, livedoid vasculitis, thrombophlebitis, cutaneous ulceration and necrosis, erythematous macules, purpura, ecchymoses, painful skin nodules, and subungual splinter hemorrhages.”
[**I cover the topic of dermatologic manifestations in APS more comprehensively here.**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#skin)
### Some Other Terms for ‘D’ & APS are:
1. **Vitamin D** \- Vitamin D comes in various forms, such as D2 and D3\. It works together with calcium to promote bone health. [According to Harvard Medical School (2021a)](https://www.health.harvard.edu/staying-healthy/vitamin-d-and-your-health-breaking-old-rules-raising-new-hopes):
> “Without enough vitamin D, the body can only absorb 10% to 15% of dietary calcium, but 30% to 40% absorption is the rule when vitamin reserves are normal.”
APS patients tend to have a greater [vitamin D deficiency of up to 70%](https://www.sciencedirect.com/science/article/abs/pii/S1521661623006125) as well (Kello & Cho, 2023). Thus, it is quite likely that your doctor will prescribe some sort of vitamin D supplement, especially if you’re on warfarin. **[Read this post for more information on bone health](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#musculoskeletal)**.
Also Read: [Calcium](#calcium) | [Vitamin K](#SectionK) | [Supplements](#supplements) | [Zinc](#SectionZ)
1. **Diffuse Alveolar Haemorrhage (DAH)** \- [DAH is a small vessel vasculitis](https://link.springer.com/article/10.1007/s11926-019-0852-7) that damages the lung microvasculature (Stoots et al., 2019). It is a rare condition that can happen to APS patients, with a high mortality rate between 30.3% – 45.8%. **[Learn more about the pulmonary and vascular manifestations of APS here, including DAH](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#pulmonary)**.
2. **DOACs** \- DOACs stands for ‘Direct Oral Anticoagulants’, and they can be categorised into these main classifications: oral direct factor Xa inhibitors (e.g. rivaroxaban and apixaban), and direct thrombin inhibitors (i.e. dabigatran).
DOACs are also anticoagulants, but differ in the way they work. Whilst there are many advantages to DOACs, such as not needing to monitor vitamin K food intake, they are also generally not recommended for APS patients, especially if you are triple positive or have had a DVT or similar before. **[Learn more about DOACs, how they work, and how they differ from warfarin in this post](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#DOACs)**.
Also Read: [Vitamin K](#SectionK) | [Triple Positive](#TriplePos) | [Warfarin](#SectionW)
1. **dRVVT (dilute Russell viper venom time)** \- This is one of the tests used to check for lupus anticoagulant. See the **[section on Snake Venom](#SnakeVenom)** for more information.
Pin to Your Antiphospholipid Syndrome Health Resource Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## E is for Embolus & Enoxaparin
### Embolus
[An embolus can be a blood clot, or piece of plaque](https://medlineplus.gov/ency/article/001102.htm) that acts like a clot. It is called an ‘embolism’ when it travels from one site of the body to another. Whilst they mostly occur in veins, embolisms can also block arteries, and are usually found in the legs or feet (MedLinePlus, 2022a).
There are many [types of embolisms](https://my.clevelandclinic.org/health/diseases/embolism); besides blood clots, they can consist of fat, tumours and even air. Depending on where the embolism is at, symptoms can include: shortness of breath, hypoxemia (low oxygen levels), hypotension (low blood pressure), headaches, swelling, and more. These can eventually lead to severe complications such as arrhythmia (abnormal heart rhythm), heart failure, kidney failure, stroke and more (Cleveland Clinic, 2024b).
Thus, it is important for APS patients to be aware that clots can consist of more than just blood product, and that [**they can lodge in unwanted places within the body beyond the veins – learn where in this post**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/).
Also Read: [Blood Clots & Bleeding](#SectionB) | [Coagulation](#coagulation) | [Haemorrhage](#haemorrhage)
### Enoxaparin
Enoxaparin ([brand names](https://www.drugs.com/ingredient/enoxaparin.html): Lovenox and Clexane) (Drugs .com, n.d.) is also known as “low molecular weight heparin” (LMWH), and is [an anticoagulant with a much shorter half-life](https://pmc.ncbi.nlm.nih.gov/articles/PMC3324206/) as compared to warfarin (Cook, 2010). It is commonly used as a bridge medication when an APS patient needs to stop taking warfarin temporarily. Common scenarios are surgeries, both major and minor, where bleeding might be anticipated, as well as during pregnancies.
Whilst enoxaparin is derived from heparin, it is important to note that [the final formulation as well as administration differ](https://www.fda.gov/drugs/postmarket-drug-safety-information-patients-and-providers/generic-enoxaparin-questions-and-answers) (U.S. Food & Drug Administration \[FDA\], 2018).
[**Learn more about enoxaparin and heparin here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#enoxaparin).
Also Read: [Injections](#injections) | [Pregnancy](#pregnancy) | [Surgery](#surgery)
### Other Words Starting with ‘E’ for APS:
1. **Etonogestrel (Implanon & Nexplanon)** \- As [oestrogen is known to increase the risk of blood clots](https://www.sciencedirect.com/science/article/pii/S1538783622150853), birth controls containing this hormone generally need to be avoided if you have Antiphospholipid Syndrome (Rosendaal, 2003).
[Etonogestrel](https://my.clevelandclinic.org/health/drugs/18407-etonogestrel-implant) is a progestin hormone that is sold under the brand names, [Implanon](https://www.rxlist.com/implanon-drug.htm) and [Nexplanon](https://www.nexplanon.com/) (Cleveland Clinic, n.d.; RxList Inc., 2022; Nexplanon, n.d.). It comes in the form of a small implant that is inserted subdermally in your arm by your gynaecologist. **[Learn more about birth control and women’s health in relation to APS here.](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#BirthControl)**
2. **Estrogen** \- See **[Oestrogen](#oestrogen)**.
3. **“Euro-Phospholipid” Project** \- The Euro-Phospholipid Project started in 1999, where 1000 Antiphospholipid Syndrome patients from 13 European countries have been followed since. It provides some interesting medical insights into APS, and correlations with other comorbidities such as Lupus (SLE). You can [view the paper on the lessons gleaned from the Euro-Phospholipid Project here](https://www.sciencedirect.com/science/article/abs/pii/S1568997207001632) (Cervera, 2008). You can also **[read this post for the latest research insights into Antiphospholipid Syndrome.](https://achronicvoice.com/latest-research-on-antiphospholipid-syndrome/)**
Also Read: [Caucasians](#caucasians) | [Lupus](#SectionL)
Pin to Your Antiphospholipid Syndrome Diagnosis Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## F is for Free Fluid & False Negative/Positive
### Free Fluid
[Intra-abdominal fluid](https://link.springer.com/referenceworkentry/10.1007/978-3-642-13327-5%5F175) collections can be classified into: free intraperitoneal fluid and contained fluid collections (Mansoori & Herrmann, 2013). Free (intraperitoneal) fluid can build up quickly and cause severe pain. An ultrasound is usually used to detect free fluid in patients with acute pain in an emergency setting.
This was what happened to me twice when [**I experienced ovarian cyst ruptures that would not stop bleeding**](https://achronicvoice.com/refused-treatment-hospital/), due to being on warfarin. The pain escalated quickly in a mere 4 hours, from mild to a life-and-death situation. [**Learn more about ovarian cyst ruptures and menstruation in this post**](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#menstruation).
Also Read: [Acute Pain ](#AcutePain)| [Haemorrhage](#haemorrhage) | [Hospital Bag](#HospitalBag) | [Ultrasound](#SectionU)
### False Negative/Positive
A [false negative](https://manoa.hawaii.edu/exploringourfluidearth/chemical/matter/properties-matter/practices-science-false-positives-and-false-negatives) is also known as a “type II error”, and is pretty self-explanatory (a negative result is obtained when it should actually be positive). A false positive (“type I error”), is the reverse, where a positive result is obtained, when truly it is negative (Exploring Our Fluid Earth, n.d.).
Whilst I’m not grateful to have Antiphospholipid Syndrome, I’m grateful that my initial diagnosis was straightforward. After suffering a transient ischemic attack (‘mild stroke’), they did a blood test and confirmed a diagnosis of APS.
Diagnosis isn’t always so straightforward however for a myriad of reasons. Patients can present with a wide range of symptoms that overlap with other health conditions or autoimmune diseases. False-positives can also occur as a result of certain medications of after having caught an infection, such as syphilis.
[False-negative/seronegative APS patients](https://onlinelibrary.wiley.com/doi/abs/10.1002/1529-0131%28200002%2943:2%3C440::AID-ANR26%3E3.0.CO;2-N) are harder to diagnose and therefore treat, as they usually present with clinical symptoms, yet no antiphospholipid antibodies are detected in their blood (Lockshin et al., 2000). Understandably, this is extremely frustrating for both the patient and doctor.
[**Read the section on Non-Criteria/Seronegative APS for more information**](#NCAPS).
Also Read: [Antiphospholipid Antibodies](#APLS) | [COVID-19](#COVID19) | [Infections](#infections) | [Syphilis False Positive](#syphilis)
### Other Terms for ‘F’ & APS are:
1. **Factor V Leiden** \- This is another type of blood clotting disorder that also increases the tendency for abnormal blood clots to form. The difference is that [Factor V Leiden](https://www.ahajournals.org/doi/full/10.1161/01.CIR.0000068167.08920.F1) is a hereditary disorder, where a mutation of one of the clotting factors increases the risk of blood clots (Ornstein & Cushman, 2003).
Whereas Antiphospholipid Syndrome is an autoimmune disease, where the body produces antibodies that attack tissues in the body and causes blood clots to form. There is a [nice infographic on the differences here](https://www.differencebetween.com/what-is-the-difference-between-factor-v-leiden-and-antiphospholipid-syndrome/) (Udayangani, 2022).
Also Read: [Blood Clots & Bleeding](#SectionB) | [Blood Disorder](#BloodDisorder) | [Genes](#genes) | [Haemophilia](#haemophilia)
1. **Factor Xa Inhibitors** \- These are another class of blood thinning medications, also known as direct oral anticoagulants (DOACs). In general, APS patients, especially those who are high risk, need to stick with warfarin instead. You can **[read more about DOACs, and why warfarin is recommended instead for APS patients here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#DOACs)**.
Also Read: [Lupus Anticoagulant](#LA) | [Triple Positive](#TriplePos)
1. **Fruits** \- You might be surprised, but it isn’t only the green foodstuffs that can interact with warfarin. [According to Norwood et al. (2015)](https://journals.sagepub.com/doi/10.1177/0897190014544823):
> “A total of 23 citations (15 case reports and 7 controlled clinical trials) were reviewed. The majority of cases involved cranberry products, while pomegranate juice, avocado, grapefruit juice, mango, and papain were also implicated in reports of suspected warfarin-fruit interactions.”
Mangoes have also been shown to increase the INR in 13 patients, who were consuming between 1 – 6 mangoes per day, for at least 2 days (yes, I am aware that nobody eats six mangoes a day, but that’s research for you 😆). Mangoes contain high levels of Vitamin A, which may inhibit CYP2C19, which is an enzyme that is involved in warfarin metabolisation (Norwood et al., 2015).
More research still needs to be conducted to determine the interaction between warfarin and fruits, but it never hurts to monitor your INR levels if you’re on warfarin, and consume any new food product. From there, you will slowly learn how to balance your diet in relation to your warfarin dosage.
**[Read this post for more information on warfarin interactions.](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#warfarin)**
Also Read: [CYP2C9 Gene](#CYP2C9) | [Vitamin D](#VitaminD) | [Diet](#diet) | [Green, Leafy Vegetables](#LeafyVeg) | [Herbs](#herbs) | [INR](#SectionI) | [Juicing](#SectionJ) | [Vitamin K](#SectionK) | [Vegetables](#SectionV)
Pin to Your Antiphospholipid Syndrome Diagnosis & Medical Resource Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## G is for Genes & Green, Leafy Vegetables
### Genes & APS
Genes are complicated things, aren’t they? As with any autoimmune disease, genetics have a complex interplay in Antiphospholipid Syndrome, where factors such as environment, trauma and comorbidities also need to be accounted for. In a warped sense, the body is pretty amazing in its ability to mess itself up.
[According to Barinotti et al. (2020)](https://www.mdpi.com/1422-0067/21/24/9551):
> “The impact of a specific genetic alteration is not restricted to the activity of the gene product carrying it, but it can also alter products of genes that actually do not carry defects \[83,84,85\]. Thus, in order to better understand complex and multifactorial disorders, such as APS, and the consequences of genetic abnormalities, it is important to look at a gene as a part of a complex network of processes and interactions and not as an isolated entity.”
There have been various studies on [familial risk factors in Antiphospholipid Syndrome](https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2141.2009.07831.x), yet the results are inconclusive due to the heterogeneity of antigen specificities and clinical manifestations of APS patients. What is fairly certain is that a few genetic abnormalities and factors are probably needed to ‘click’, to set Antiphospholipid Syndrome and its consequences into motion (Castro‐Marrero et al., 2009).
Another interesting thing to note is that [Antiphospholipid Syndrome isn’t passed down directly from parent to child](https://www.nhs.uk/conditions/antiphospholipid-syndrome/causes/) like some other autoimmune diseases (NHS, 2022a). You can [**learn more about polygenes here**](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#PassAPS).
Also Read: [Paediatric APS](#paediatric) | [Young Adults](#SectionY)
### Green, Leafy Vegetables
Green, leafy vegetables, as well as certain legumes and vegetable oils contain a fairly high amount of Vitamin K1\. If you’ve just received an Antiphospholipid Syndrome diagnosis and are on warfarin, your doctor would highlight this to you as it’s important to remember.
Having said that, [moderation is always key when it comes to warfarin management](https://www.ccjm.org/content/ccjom/70/4/361.full.pdf), as the dosage is adjusted to your regular diet (Jaffer & Bragg, 2003). I will cover APS and food in a separate post, as it’s a complex topic. In the meantime, you can [**read more about warfarin medication interactions here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#WarfarinInteractions).
Also Read: [Vitamin D](#VitaminD) | [Diet](#diet) | [Coumarin](#coumarin) | [Fruits](#fruits) | [Green Tea](#GreenTea) | [Vitamin K](#SectionK) | [Vegetables](#vegetables) | [Saponins](#saponins)
Read Related Posts:
- [Vitamin D & Vitamin K2: How They Boost Each Other in the Body](https://achronicvoice.com/vitamin-d-vitamin-k2/)
- [An Inspirational Poem on Miracles, by Thuli Zuma](https://achronicvoice.com/poem-on-miracles-thuli-zuma/)
- [Dangerous Gifts for People with Chronic Illnesses (and Gift Ideas to Swap Them With)](https://achronicvoice.com/dangerous-gifts-chronic-illness/)
- [“It’s in My Blood”: Sarah Frison – A Pastry Chef with a Stomach Disorder](https://achronicvoice.com/blood-sarah-frison-gastroparesis/)
- [My Responses to “A Day in the Life” Linkup (What Does ‘Normal’ Even Mean?)](https://achronicvoice.com/day-in-the-life/)
### Other Words for ‘G’ & APS are:
1. **Google Alerts** \- Not directly related to APS, but Google Alerts and RSS Feeds are a great way to stay on top of the latest news and research about it. **[Learn how to use them to keep up with the latest research on Antiphospholipid Syndrome here](https://achronicvoice.com/latest-research-on-antiphospholipid-syndrome/#personal)**.
2. **Green Tea** \- I’m not sure about other countries, but this was one of the first food and drink items that the doctor told me to avoid when I first received my Antiphospholipid Syndrome diagnosis. [Green tea is a pretty potent coagulant](https://www.mountsinai.org/health-library/herb/green-tea), although [it does have anti-inflammatory health benefits](https://www.spandidos-publications.com/10.3892/ijmm.2014.1635) that may help with managing other autoimmune conditions such as Lupus (Mount Sinai, n.d.-a; Wang et al., 2014).
[Green tea has also been reported to have an antiplatelet effect](https://www.tandfonline.com/doi/abs/10.1517/14740338.5.3.433), which increases bleeding, so it seems to have multiple properties as well (Nutescu et al., 2006). This is a common conundrum for those with APS, as so many beneficial foods need to be moderated due to warfarin intake.
Also Read: [Alcohol](#alcohol) | [Blood Clots & Bleeding](#SectionB) | [Broccoli](#broccoli) | [Coagulation](#coagulation) | [Inflammation](#inflammation) | [Juicing](#SectionJ) | [Vitamin K](#SectionK)
Pin to Your APS & Autoimmune Disease Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## H is for Hughes’ Syndrome, Herbs, Haemorrhage & Heparin-Induced Thrombocytopenia
### Hughes’ Syndrome
Antiphospholipid is also known as [Hughes’ Syndrome](https://www.proquest.com/openview/62fbe3b476ebec22f4ee6a9446c7f2f0/1), after the doctor who first described it in 1983 (Hughes, 2007). (Fun fact: I’ve visited him in person in London!) I suppose “Hughes’ Syndrome” is easier to remember and pronounce as compared to “Antiphospholipid Syndrome”, though the latter does have a nice pitter-patter ring to it.
Also Read: [Antiphospholipid Syndrome](#SectionA) | [Sticky Blood](#StickyBlood)
### Herbs
Herbs are tricky things; there are so many superfoods and traditional herbs touted for their health benefits. They might even be beneficial in the management of other chronic illnesses, such as Lupus (SLE). Yet, there is little medical literature on the interaction between such herbs, and their blood thinning or blood clotting effects.
Having experimented with common Chinese and Indian herbs in soups and foods – sometimes unintentionally – I was surprised to find out how quickly my INR could swing. I didn’t have to consume a lot of these herbs for that to happen, and thus I approach them with great caution. I try to find information about the herb on Google, and only taste a little if it’s something I’ve never tried before. I then compare my INR the next day with my CoaguChek machine, to see what difference it made, if any.
[According to Chua et al. (2015)](http://www.smj.org.sg/article/interaction-between-warfarin-and-chinese-herbal-medicines):
> “This review has evaluated the current published evidence regarding the herb-warfarin interactions of 44 commonly used Chinese herbal products in Singapore. Of these, 11 herbs (danshen, ginkgo, dong quai, American ginseng, safflower, peach kernel, licorice, Asian ginseng, lycium, ginger and notoginseng) were found to have the strongest evidence of potential interaction with warfarin.”
I will be writing a separate post dedicated to herbal interactions with Antiphospholipid Syndrome, because it is a mega topic that could take up half the content on this page, so keep an eye out for it! [**Sign up for my newsletter here**](https://eepurl.com/djDZ5P) should you wish to be kept in the loop.
In the meantime, you can [**read more about warfarin medication interactions here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#warfarin).
Also Read: [Cupping, Traditional Chinese Medicine (TCM) & Chiropractor](#cupping) | [Diet](#diet) | [INR](#SectionI) | [Vitamin K](#SectionK) | [Lupus (SLE)](#SLEAPS) | [Omega Oils](#OmegaOils) | [Roche (Coaguchek)](#roche) | [Supplements](#supplements) | [Vegetables](#vegetables) | [Warfarin](#warfarin)
### Haemorrhage
This is the medical term for excessive bleeding. So why are we talking about bleeding, when Antiphospholipid Syndrome is a blood clotting disorder? This is because the medications used for the management of APS are mostly anticoagulants, which thin the blood and therefore, increases the risk for bleeding ironically.
I’ve suffered from a few of such haemorrhagic events, where different types of coagulants were used in an attempt to stop the bleeding. You can [**read about my experiences at the Emergency Department here**](https://achronicvoice.com/refused-treatment-hospital/), where another hospital refused to accept me for treatment due to the ‘high risk’.
This is also the reason why your INR needs to be monitored if you are on warfarin – to ensure that your blood is ‘thin’ enough, but not too much. Intravenous (IV) vitamin K is usually administered to [reverse the effects of warfarin during a major haemorrhagic event](https://jcp.bmj.com/content/57/11/1132) (Hanley, 2004). [**Learn more about reversal agents and the reversal protocol here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#reversal).
Also Read: [Blood Clots & Bleeding](#SectionB) | [Ovarian Cyst Rupture](#OCR) | [Vitamin K](#SectionK)
### Heparin-Induced Thrombocytopenia (HIT)
[Heparin-Induced Thrombocytopenia](https://www.ncbi.nlm.nih.gov/books/NBK482330/) (HIT) is a severe complication that occurs from the use of any products containing the drug, heparin. The main symptoms are a fall in platelet count and a hypercoagulable state, which can be life-threatening (Nicolas et al., 2023).
There are two types of HIT – Type I HIT and Type II HIT – with the latter being more severe as it is activated by antibodies. According to Nagano et al. (2023), [currently the thrombin inhibitors used for HIT therapy do not have antidotes](https://www.cell.com/molecular-therapy-family/nucleic-acids/fulltext/S2162-2531%2823%2900211-1), although they are working on one. There is also some interesting [**research into a new drug to combat HIT**](https://achronicvoice.com/latest-research-on-antiphospholipid-syndrome/#aptamers). You can also [**learn more about heparin here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#HeparinVsLMWH).
Also Read: [Blood Clots & Bleeding](#SectionB) | [Heparin](#heparin) | [Platelets](#platelets) | [Thrombocytopenia](#thrombocytopenia)
### Other Important Terms Under ‘H’ for APS are:
1. **Haemophilia** \- You’ve probably heard of Haemophilia, also known as the ‘[Royal Disease](https://hemaware.org/bleeding-disorders-z/royal-disease)’ that affected English, German, Russian, and Spanish nobility. So I guess it has more awareness due to such publicity (Hickey, 2023).
Haemophilia is kind of (and not) the opposite of Antiphospholipid Syndrome. Both are blood disorders; in APS, the blood tends to clot, whereas in Haemophilia it does not clot properly, which leads to bleeding. [APS is also more common in females](https://medlineplus.gov/genetics/condition/antiphospholipid-syndrome/#frequency) (approx. 70%), whereas Haemophilia in males (for both [Haemophilia A](https://www.bleeding.org/bleeding-disorders-a-z/types/hemophilia-a) and [Haemophilia B](https://www.bleeding.org/bleeding-disorders-a-z/types/hemophilia-b)) (MedLinePlus, 2022b; National Bleeding Disorders Foundation \[NBDF\], n.d.-a; NBDF, n.d.-b).
[Haemophilia is also an inherited disorder](https://www.cdc.gov/hemophilia/about/index.html), whereas multiple genetic and environmental factors play a role in APS, with [no clear pattern of inheritance](https://medlineplus.gov/genetics/condition/antiphospholipid-syndrome/#inheritance) (Centers for Disease Control and Prevention \[CDC\], 2024b; MedLinePlus, 2022b).
Also Read: [Blood Disorder](#BloodDisorder) | [Factor V Leiden](#FactorV) | [Genes](#genes) | [Syphilis False Positive](#syphilis)
1. **Heart Attacks - [Read this post for more information on cardiovascular disease and Antiphospholipid Syndrome.](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#CVD)**
2. **Heparin** \- Heparin is given intravenously only within a hospital setting. It has a higher chance of causing [Heparin Induced Thrombocytopenia](https://www.sciencedirect.com/science/article/pii/S2352556820300448) (HIT), where massive activation of platelets take place, with multi-cellular release of micro particles that contribute to hypercoagulability in patients (Gruel et al., 2020). Hence, patients need to be closely monitored. **[Learn more about heparin and other APS medications here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#HeparinVsLMWH)**.
Also Read: [HIT (Heparin-Induced Thrombocytopenia)](#HIT) | [Injections](#injections) | [Platelets](#platelets)
1. **Hospital Bag** \- If you’ve been chronically ill for a while, chances are you have a ‘go bag’ for emergency trips to the hospital. I have one packed with a few days’ supply of medications, a change of clothing, underwear, hygiene products, a powerbank, water bottles, slippers, and other basic supplies I may need at the A&E, or should I need to be admitted. It can be a hassle to write down a list of things for your family members to bring, and they may not be able to find everything you need either.
Read Related Posts:
- [Top Tips for Travelling with Chronic Illness & Disability (From a Girl Who Loves to Travel)](https://achronicvoice.com/top-tips-travelling-chronic-illness-disability/)
- [After Surgery Care at Home: Hygiene Resources](https://achronicvoice.com/after-surgery-care-at-home-hygiene-resources/)
- [Must Haves After Knee Surgery to Stay Comfortable in Bed](https://achronicvoice.com/must-haves-after-knee-surgery-stay-comfortable-bed/)
- [How to Maximise Accessibility & Improve Your Quality of Life at Home](https://achronicvoice.com/maximise-accessibility-home/)
- [How to Prepare for a Medical Appointment in a Post-Pandemic World (4 Top Tips From a Doctor)](https://achronicvoice.com/prepare-medical-appointment/)
Pin & Help to Share This Antiphospholipid Syndrome A to Z Guide:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## I is for INR, Infections & Injections
### INR (International Normalised Ratio)
A [“PT” (Prothrombin Time)/INR blood test](https://www.healthdirect.gov.au/international-normalised-ratio-INR-test) must be done regularly for all Antiphospholipid Syndrome patients who are on warfarin. The PT/INR blood test measures how quickly it takes for your blood to clot, so that your doctor can adjust your warfarin medication accordingly, if needed. PT tests can also be used to check for blood clotting and bleeding conditions, and how well your liver is working (Healthdirect Australia, 2022).
Also Read: [African Americans](#AfricanAmericans) | [Asians](#asians) | [Caucasians](#caucasians) | [Chinese Patients](#chinese) | [CYP2C9 Gene](#CYP2C9) | [Genes](#genes) | [Vitamin K](#SectionK) | [Warfarin](#warfarin)
### Infections: Both the Trigger & Target
Infections can either be the trigger to Antiphospholipid Syndrome, and/or worsen clinical manifestations in APS patients. According to Radic and Pattanaik (2018), [certain infectious agents might interact with β2GPI](https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2018.00969/full), which has implications in Antiphospholipid Syndrome. Other possible mechanisms for activation of disease include molecular mimicry, as well as an abnormality in immune-related protein and blood components.
According to Shoenfeld et al. (2006), [many infections are often accompanied by an increase in aPLs](https://ard.eular.org/article/S0003-4967%2824%2920318-6/abstract) (antiphospholipid antibodies). Some of these infections include, but are not limited to: skin infections, human immunodeficiency virus (HIV) infection, Hepatitis C (Hep C) virus, urinary tract infections (UTIs) and more (also see: [Cervera et al., 2004](https://pmc.ncbi.nlm.nih.gov/articles/PMC1754783/)). The [two most commonly reported viral infections associated with aPLs](https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2019.01609/full) are HIV and Hep C (Martirosyan et al., 2019).
Shoenfeld et al. (2006) also propose a two hit hypothesis; in the first hit, aPLs increase the risk for thrombosis, and in the second hit, involvement of TLRs (toll-like receptors) by microbial structures together with those mediated by anti-β2GPI antibodies have a synergistic effect that contribute to the clotting event.
According to a review by Mendoza-Pinto et al. (2018), [all types of infections can trigger APS](https://link.springer.com/article/10.1007/s11926-018-0773-x), from bacterial to parasitic and fungal, but especially viral. Certain vaccines can also trigger APS. One thing to note is that the existence of aPLs are mostly transient for an otherwise healthy person who has caught an infection; that is, the levels may rise in the patient’s blood for a period of time, but usually subside without further incidence (also see: Martirosyan et al., 2019).
[**You can learn more about which major organs APS can hit in this post**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/).
Also Read: [Anti-β2GPI](#AntiB2GPI) | [Antiphospholipid Antibodies](#APLS) | [Injections](#injections) | [Vaccinations](#vaccinations)
Read Related Posts:
- [“But That’s Normal for Me” (Why I Mistook Dengue Fever for a Lupus Flare)](https://achronicvoice.com/dengue-fever-lupus/)
- [12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?)](https://achronicvoice.com/body-gone-rogue-invisible-illness/)
- [A Roundup of Biggest Pain Flare Triggers (from 40 People with Chronic Illness)](https://achronicvoice.com/pain-flare-triggers/)
- [Sometimes, Physical Pain Isn’t the Worst Part About Chronic Illness](https://achronicvoice.com/pain-chronic-illness/)
- [Dangerous Gifts for People with Chronic Illnesses (and Gift Ideas to Swap Them With)](https://achronicvoice.com/dangerous-gifts-chronic-illness/)
### Injections as an APS Patient
In general, [subcutaneous injections](https://medlineplus.gov/ency/patientinstructions/000430.htm) are okay for people who are on anticoagulants, as they penetrate into the fatty tissue just beneath the skin (MedLinePlus, 2023). This is also how people with Antiphospholipid Syndrome self-administer enoxaparin (Clexane/Lovenox) as well. You can [**learn more about enoxaparin here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#enoxaparin).
Intramuscular injections are a little trickier, as there is a [risk of bleeding and muscle haematomas](https://immunisationhandbook.health.gov.au/contents/vaccination-for-special-risk-groups/vaccination-for-people-with-bleeding-disorders) (Australian Immunisation Handbook, 2023). Patients who are on blood thinners generally need to stop taking them before receiving an intramuscular injection or vaccine (such as the [HPV vaccine](https://www.cdc.gov/vaccines/vpd/hpv/hcp/administration.html) (CDC, 2021). [**Learn more about the reversal protocol here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#reversal).
In some cases, such as an epinephrine injection during an anaphylaxis reaction, it cannot be avoided. In such cases, the patient should be monitored until healthcare professionals have deemed that both bleeding and clotting risks are well under control. This was what happened to me when I was undergoing rituximab treatment for Lupus at the hospital, and [**suffered an allergic reaction to it**](https://achronicvoice.com/anaphylaxis-rituximab/).
Also Read: [Blood Clots & Bleeding](#SectionB) | [Haemorrhage](#haemorrhage) | [Lupus (SLE) ](#SLEAPS) | [Vaccinations](#vaccinations)
### Other Terms for “I” and APS:
1. **Immunosuppressants** \- There are some immunosuppressants, such as [azathioprine](https://www.sciencedirect.com/science/article/abs/pii/S154359460600002X), and many other [medications that interact with warfarin](https://www.uptodate.com/contents/image?imageKey=HEME%2F62697) (Ng & Crowther, 2006; UpToDate, n.d.). You will need to work with your doctor(s), if you need to take a medication for a comorbidity that interacts with warfarin.
Your warfarin dose will most likely need to be tweaked, to ensure that your INR is within your personal target range. Always consult your own doctor before changing or taking medications that might potentially interact with warfarin. **[Learn more about warfarin drug interactions here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#warfarin)**.
2. **Implanon** \- This is the brand name of a birth control implant that contains etonogestrel, a progestin-based hormone. **[Read more about Implanon, hormones and birth control here.](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#BirthControl)**
3. **Inflammation** \- [Antiphospholipid Syndrome is a thrombo-inflammatory autoimmune disease](https://pmc.ncbi.nlm.nih.gov/articles/PMC9877197/), with ongoing research as to its role within the immune system. Inflammation can be activated from various pathways, with antiphospholipid antibodies as a contributing factor (Ambati et al., 2023). You can also **[learn more in this post on the systemic implications of Antiphospholipid Syndrome](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#systemic)**.
4. **Interactions** \- There are many everyday activities that can interact with warfarin and Antiphospholipid Syndrome, such as your diet and contact sports. APS patients need to be careful of getting hit (even ‘gently’ at times!), as they can bruise and bleed easily.
I use [MedScape](https://reference.medscape.com/drug-interactionchecker) (n.d.) all the time to check for medication interactions with warfarin and also other drugs. Another alternative medication interaction checker is [DrugBank](https://go.drugbank.com/drug-interaction-checker) (n.d.). I have the [MedScape app downloaded on my iPhone](https://apps.apple.com/us/app/medscape/id321367289), and you can also [get it at the Google Play app store](https://play.google.com/store/apps/details?id=com.medscape.android&hl=en%5FUS&pli=1). **[ Learn how it works and how I use the MedScape app here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#CheckWarfarin)**.
Also Read: [Cupping, Traditional Chinese Medicine (TCM) & Chiropractor](#cupping) | [Google Alerts](#GoogleAlerts) | [Herbs](#herbs) | [Massages](#massages) | [Sports](#sports) | [Supplements](#supplements)
1. **Invisible Illness** \- Antiphospholipid Syndrome is dangerous because it is an invisible illness. In fact, it may not present with any pain symptoms, but when it strikes, it goes in for the kill. This was my fatal mistake as a teenager.
I presumed that I was fine since I did not experience any pain, and continued to eat, drink and play sports as per usual. That was until I **[developed multiple DVTs and a pulmonary embolism that nearly costed me my life](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)**. The event also **[activated all my other autoimmune diseases and chronic illnesses subsequently.](https://achronicvoice.com/bloody-mutations-lupus/)** So learn from my mistakes and pay attention to your body, whether you feel any pain at present or not.
**[Read more about how Antiphospholipid Syndrome can affect your entire body in this post.](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/)**
Also Read: [Antiphospholipid Syndrome](#SectionA) | [Comorbidities](#comorbidities) | [Lupus (SLE)](#SLEAPS) | [Sports](#sports) | [Young Adults](#SectionY)
Read Related Posts:
- [The Annoying Thing About Living with Antiphospholipid Syndrome (My Personal Experiences)](https://achronicvoice.com/living-with-antiphospholipid-syndrome-personal-experiences/)
- [12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?)](https://achronicvoice.com/body-gone-rogue-invisible-illness/)
- [“But That’s Normal for Me” (Why I Mistook Dengue Fever for a Lupus Flare) ](https://achronicvoice.com/dengue-fever-lupus/)
- [Sometimes, Physical Pain Isn’t the Worst Part About Chronic Illness](https://achronicvoice.com/pain-chronic-illness/)
- [Invisible Cities Linkup: Pros & Cons of Living with Chronic Illness in Your City](https://achronicvoice.com/invisible-cities-linkup/)
Pin to Your Antiphospholipid Syndrome Diagnosis Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## J is for Juicing
You know how they tell you that kale (or whatever vegetable) juice is going to work miracles for you? Well, you might want to avoid that with Antiphospholipid Syndrome, as green leafy vegetables tend to contain high levels of vitamin K, which is a coagulant and interacts with warfarin.
Having said that, consistency is key. According to Booth and Centurelli (1999) (they have a comprehensive list of common foods that contain vitamin K, too):
> “When a dietary vitamin K interaction with warfarin is suspected, [inconsistent consumption of green vegetables is often the cause of fluctuations in vitamin K status](https://academic.oup.com/nutritionreviews/article-abstract/57/9/288/1860852).”
So if it is part of your daily routine to drink a cup of kale juice every single morning, then you need to stick to it *every day*. ***Warfarin dosages are adjusted based on your personal diet and not someone else’s***. This is why warfarin management can be tricky, especially when you first receive an Antiphospholipid Syndrome diagnosis, as it’s difficult to know where to even begin diet-wise.
Should you wish to add or remove something that interacts with warfarin from your daily or weekly diet plan, then you need to discuss this with your doctor. They will monitor your INR closely, and should work with you to make that shift happen. [**Learn more about warfarin and its interactions here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#warfarin).
Also Read: [Coumarin](#coumarin) | [Vitamin D](#VitaminD) | [Diet](#diet) | [Green, Leafy Vegetables](#LeafyVeg) | [Herbs](#herbs) | [INR](#INR) | [Vitamin K](#SectionK) | [Omega Oils](#OmegaOils) | [Quinoa](#SectionQ) | [Saponins](#saponins) | [Supplements](#supplements) | [Vegetables](#vegetables) | [Zinc](#SectionZ)
Pin to Your Antiphospholipid Syndrome & Healthy Living Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## K is for Vitamin K
Vitamin K is **the** vitamin that patients with an Antiphospholipid Syndrome diagnosis become most familiar with eventually, as it [interacts with warfarin](https://ods.od.nih.gov/factsheets/VitaminK-HealthProfessional/) and contributes to the blood clotting process (Office of Dietary Supplements \[ODS\], 2021). It’s a little ironic because most people are more familiar with vitamin C and vitamin E, but don’t fully understand what vitamin K does. Neither do they know which foods and drinks contain it.
Apart from blood coagulation, [vitamin K is also important for many other bodily processes](https://www.mdpi.com/2304-8158/10/12/3136). It works together with vitamin D to promote bone health, prevent vascular calcification and also modulate cell proliferation (Bus & Szterk, 2021). There has also been recent interest in [vitamin K’s role in intestinal health](https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2021.791565/full) (Lai et al., 2022). Thus, whilst it is important to monitor your vitamin K intake, it is also important to take into account your body’s overall nutritional needs.
### Types of Vitamin K
Vitamin K is not quite ***a*** vitamin, but a family of compounds that share a similar chemical structure, 2-methyl-1,4-napthoquinone. These are primarily vitamin K1 (phylloquinone) and vitamin K2 (a series of menaquinones). A synthetic version exists as well in the form of [vitamin K3 (menadione)](https://ods.od.nih.gov/factsheets/VitaminK-HealthProfessional/), although it is no longer used in food products due to evidence that it can damage hepatic cells (ODS, 2021).
According to Booth (2012), [all photosynthetic plants produce vitamin K1](https://www.tandfonline.com/doi/full/10.3402/fnr.v56i0.5505), with green, leafy vegetables containing the highest concentration. Vitamin K2 is primarily of bacterial origin and can be found in food products such as fermented foods. MK-4 (menaquinone-4) is the exception, as it is mostly found in dairy products, and also as a result of vitamin K1 or K3 conversion within the body.
### Vitamin K is Heavily Diet Dependent
No matter what form it comes in, vitamin K is fat-soluble, although the bioavailability, absorption and storage varies. [Humans also do not produce vitamin K](https://www.mdpi.com/2072-6643/12/1/138), and need to rely on dietary intake to meet the body’s requirements for it (Simes et al., 2020). In addition, the [human body recycles vitamin K](https://pmc.ncbi.nlm.nih.gov/articles/PMC5726210/) as only a minute amount of it is retained (Fusaro et al., 2017).
As vitamin K intake is heavily dependent on diet which varies by country and person, it has been hard to pin down a fixed daily intake requirement even up to this day (Booth, 2012). In most Western nations, the [main form of vitamin K intake is vitamin K1](https://pmc.ncbi.nlm.nih.gov/articles/PMC5726210/), whilst in Japan, it is vitamin K2 (Fusaro et al., 2017).
I will be writing a separate post that focuses on vitamin K, as I realised this section would become too lengthy if I kept adding to it 😉 You can [**learn more about warfarin and medication interactions here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#warfarin).
Also Read: [Coumarin](#coumarin) | [Calcium](#calcium) | [Vitamin D](#VitaminD) | [Diet](#diet) | [Omega Oils](#OmegaOils) | [Saponins](#saponins) | [Supplements](#supplements) | [Zinc](#SectionZ)
Read Related Posts:
- [Vitamin D & Vitamin K2: How They Boost Each Other in the Body](https://achronicvoice.com/vitamin-d-vitamin-k2/)
- [Oral Spray Vitamins: A Quick & Easy Way to Get Your Nutrients with Chronic Illness](https://achronicvoice.com/oral-spray-vitamins/)
- [The Causes & Dangers of Malabsorption & An Easy Way to Get Your Nutrients](https://achronicvoice.com/malabsorption-nutrients/)
- [Dysphagia & Swallowing Problems (and How Oral Vitamin Sprays Can be of Help to You)](https://achronicvoice.com/dysphagia-oral-vitamin-sprays/)
Pin to Your Vitamins, Nutrition & Antiphospholipid Syndrome Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## L is for Lupus & Lupus Anticoagulant
### Lupus Anticoagulant – A Double Misnomer
It’s important to note that there is a difference between [Systemic Lupus Erythematosus (SLE / the autoimmune disease)](https://www.cdc.gov/lupus/about/index.html) (CDC, n.d.), and the lupus anticoagulant (a heterogeneous class of immunoglobulins).
The [‘anti’ in ‘lupus anticoagulant’ is actually a misnomer](https://www.apjai-journal.org/wp-content/uploads/2017/12/10LupusAnticoagulantAPJAIVol5No2December1987P161.pdf) with historical roots, as it was originally found to prolong a clotting test that is dependant on phospholipids in Lupus patients. Later, it was discovered that the lupus anticoagulant actually increases the tendency for the blood to clot (Wong et al., 1987).
The ‘lupus’ in ‘lupus anticoagulant’ is also a misnomer, as more than half of people who have this antibody do not indeed have Lupus (the autoimmune disease). So you can see how Lupus and lupus anticoagulant are easily confused!
Also Read: [Antiphospholipid Antibodies](#APLS) | [Antiphospholipid Syndrome](#APS) | [Phospholipids](#phospholipids) | [Syphilis False Positive](#syphilis)
### Lupus (SLE) & APS Overlaps
Having said that, it is also not unusual for patients with Lupus to be diagnosed with APS, and vice versa. [Both autoimmune diseases are closely linked](https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2018.00969/full), with a spectrum of overlaps in clinical manifestations. For some patients, it is considered Primary APS with Secondary Lupus, or the other way around, depending on their manifestations (Radic & Pattanaik, 2018).
SLE occurs more frequently in females than in males with a 9:1 ratio, and generally manifests during the fertile period between 15 – 50 years of age. The clinical manifestations may differ a little between female and male patients. [Antiphospholipid antibodies are also frequently found in SLE patients](https://www.sciencedirect.com/science/article/abs/pii/S0896841116302475) (at least 20-30%) (Pons-Estel et al., 2017).
You can [**read this post to learn all about females and women’s health in relation to Antiphospholipid Syndrome**](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/).
Also Read: [Men](#men) | [Primary APS](#PAPS) | [Secondary APS](#SAPS) | [Young Adults](#SectionY)
### Testing for Lupus Anticoagulant (LA)
The lupus anticoagulant (LA) is one of several criteria used to diagnose Antiphospholipid Syndrome. Not all APS or Lupus patients will test positive for the lupus anticoagulant, and [detection of LA](https://www.sciencedirect.com/science/article/pii/S1538783622105738) also consists of a sequence of tests, instead of just a single one (Pengo et al., 2009).
According to Rasool and Tiwari (2023), this [sequence of tests for lupus anticoagulant](https://www.ncbi.nlm.nih.gov/books/NBK544357/) include an initial screening test, a mixing study, and a final confirmatory test. You may be familiar with some of the tests used in this sequence, such as PTT and dRVVT. Rasool and Tiwari (2023) have also summarised the LA testing criteria as outlined by the International Society of Thrombosis and Hemostasis (ISTH) here:
- *“(Screening test) Prolonged result in one of two coagulation tests that are phospholipids dependent such as PTT-LA or DRVVT*
- *(Mixing study) observe the prolonged result on mixing study*
- *(Confirmatory test) Lack of prolonged time when adding additional phospholipids*
- *Ruling out other coexisting coagulation factor inhibitor such as factor VII.”*
The [full guide on lupus anticoagulant testing](https://www.jthjournal.org/article/S1538-7836%2822%2903725-4/fulltext) can be found in the Journal of Thrombosis and Haemostasis, should you be interested to learn more (Devreese et al., 2020).
Also Read: [2023 ACR/EULAR APS Criteria](#EULAR) | [Anti-β2GPI](#AntiB2GPI) | [Anticardiolipin Antibodies](#anticardiolipin) | [INR](#INR) | [Phospholipids](#phospholipids) | [Snake Venom (dRVVT)](#SnakeVenom)
### Lupus Anticoagulant – aPL Associated with the Highest Risk for Thrombosis
Of all the antibodies that mark Antiphospholipid Syndrome, [patients with the lupus anticoagulant are also at the highest risk of thrombosis](https://www.ahajournals.org/doi/full/10.1161/ATVBAHA.107.153536) (Pengo et al., 2007). The [odds ratio for thrombosis are 5 – 6 times higher](https://ashpublications.org/blood/article/101/5/1827/106631/Lupus-anticoagulants-are-stronger-risk-factors-for), and presence of LA are both strong indicators for thrombosis and Systemic Lupus Erythematosus (SLE) (Galli et al., 2003). Hence, both APS and SLE patients need to monitor their LA markers periodically.
Another interesting thing to note is that [patients who are on DOACs (except perhaps for apixaban) may yield false-positive results for lupus antibody](https://www.sciencedirect.com/science/article/abs/pii/S1568997216302774) (Hoxha et al., 2017). Clinical research is still ongoing for this. You can [**read about the latest APS research in this post**](https://achronicvoice.com/latest-research-on-antiphospholipid-syndrome/), and also [**learn more about DOACs here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#DOACs).
Also Read: [Antiphospholipid Antibodies](#APLS) | [Blood Clots](#BloodClots) | [Coagulation](#coagulation) | [False Positive/Negative](#FalseNegPos) | [Non-Criteria/Seronegative APS](#NCAPS)
### Other Terms for “L” and APS are:
1. **Labels** \- It’s important to check food labels when you first receive an Antiphospholipid Syndrome diagnosis, and are unfamiliar with what to eat. Food labels and percentages can give clues as to whether an ingredient might interact with your APS medications.
A little trick or tip is to avoid products that are labelled as ‘good for heart health’ or ‘not for pregnant women’, especially in supplement form. These consumable products generally have blood thinning effects, and supplements often come in a concentrated form. I will write a post on little APS hacks in future, when I can! In the meantime, you can **[learn more about warfarin interactions here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#WarfarinInteractions)**.
Also Read: [Vitamin D](#VitaminD) | [Diet](#diet) | [Omega Oils](#OmegaOils) | [Vitamin K](#SectionK) | [Saponins](#saponins) | [Supplements](#supplements) | [Zinc](#SectionZ)
Read Related Posts:
- [My Recovery Time for Simultaneous Bilateral Patellar Tendon Rupture (With Lupus & Steroid Treatment)](https://achronicvoice.com/recovery-time-simultaneous-bilateral-patellar-tendon-rupture-lupus-steroids/)
- [“But That’s Normal for Me” (Why I Mistook Dengue Fever for a Lupus Flare)](https://achronicvoice.com/dengue-fever-lupus/)
- [Bloody Mutations into Lupus](https://achronicvoice.com/bloody-mutations-lupus/)
- [What’s it Like to Live with a Heart Rhythm Disorder?](https://achronicvoice.com/heart-rhythm-disorder/)
- [My Second Brush with Death: A Broken Heart (Literally)](https://achronicvoice.com/death-broken-heart/)
Pin to Your Antiphospholipid Syndrome & Lupus Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## M is for Miscarriage, Men with APS & Musculoskeletal Manifestations
### Miscarriages & APS
[Recurrent miscarriages](https://pmc.ncbi.nlm.nih.gov/articles/PMC3279165/) are a common indication of Antiphospholipid Syndrome (Di Prima et al., 2011). Apart from miscarriages, pregnancy with APS also comes with added risks. As this is an extensive topic, I have separated it into a post of its own. [**Read more about miscarriage, pregnancy and women’s health with APS here**](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/).
Also Read: [Paediatric APS](#paediatric)
### Antiphospholipid Syndrome in Men
Antiphospholipid Syndrome occurs more commonly in women than in men, with a ratio of about 3.5:1, but few studies have been done on how the disease manifests between sexes. Albeit the small sample sizes, here is what has been found so far in terms of prevalent APS manifestations between males and females ([Truglia et al., 2022](https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2022.932181/full); [Jara et al., 2005](https://journals.sagepub.com/doi/abs/10.1191/0961203305lu2176oa); [Cervera et al., 2002](https://onlinelibrary.wiley.com/doi/abs/10.1002/art.10187)):
**Females**: central nervous system, stroke / TIA (transient ischemic attack), pulmonary embolism and venous thrombosis at a young age.
**Males**: mesenteric thrombosis, Budd-Chiari syndrome, gastrointestinal complications, arterial thrombotic events (such as myocardial infarctions and peripheral thrombosis of lower limbs), later-onset but more relapsing arterial events and epilepsy.
Other research that has been found so far, albeit limited, is that males tend to have Primary APS more than Secondary APS, unlike women where the ratios found were closer in number. Female also tend to have more IgM anticardiolipin antibodies than males (Truglia et al., 2022; [de Carvalho, 2011](https://link.springer.com/article/10.1007/s00296-009-1346-0)).
You can [**read this post for more information on the systemic implications related to Antiphospholipid Syndrome**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#systemic).
Also Read: [Anticardiolipin Antibodies](#anticardiolipin) | [Primary APS](#PAPS) | [Secondary APS](#SAPS) | [Transient Ischaemic Attack](#TIA) | [Strokes](#strokes)
### Musculoskeletal Manifestations
Several [musculoskeletal manifestations have been reported in APS patients](https://journals.sagepub.com/doi/abs/10.1177/0961203316636467), namely: Arthralgia/Arthritis, Avascular Necrosis/Osteonecrosis, bone marrow necrosis, complex regional pain syndrome type-1 (reflex sympathetic dystrophy), muscle infarction, non-traumatic fractures and osteoporosis (Noureldine et al., 2016). Musculoskeletal manifestations can also be further complicated with comorbidities, such as Lupus (SLE). [**Learn more about musculoskeletal manifestations in APS patients here**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#musculoskeletal).
Read Related Posts:
- [What It Feels Like to be Suddenly Disabled](https://achronicvoice.com/suddenly-disabled/)
- [My Recovery Time for Simultaneous Bilateral Patellar Tendon Rupture (With Lupus & Steroid Treatment)](https://achronicvoice.com/recovery-time-simultaneous-bilateral-patellar-tendon-rupture-lupus-steroids/)
- [What’s it Like to be on a High Dose of Steroids? (And the First Question You Will Definitely Ask)](https://achronicvoice.com/high-dose-steroids/)
- [Would You Rather: Have an Invisible Illness or a Visible Disability?](https://achronicvoice.com/invisible-illness-disability/)
- [3 Types of Chronic Pain that Sound Bearable, but are Not](https://achronicvoice.com/not-big-deal-experience-real/)
### Other Terms for “M” and APS are:
1. **Massages** \- Massage involves touch, and with that, a possibility of bruising due to the pressure applied. As a person with APS, I’m sure you’re familiar with how easily a bruise can form! Whilst I suppose that the safest solution to avoid blood clots is to not have any massages at all, I find life sad without them. Massages are very therapeutic for me, especially when I’m in a Lupus or Sjögren’s pain flare, and am aching everywhere. They truly do help me to sleep better at night, and ease some of the pain.
So what I do is to be stringent with the selection of a massage therapist, and also voice out when I think they need to reduce the pressure. I actually found a masseuse whom I really like, and I return to her all the time because she knows my body pretty well by now. I never get a bruise after her massages, and always feel much brighter and better after. ***Please note that I am simply sharing my experiences; do check with your own doctor if you would like to try massages as a pain management strategy for your other chronic illnesses***.
Also Read: [Blood Clots & Bruising](#SectionB) | [Cupping, Traditional Chinese Medicine (TCM) & Chiropractor](#cupping) | [Herbs](#herbs) | [Lupus](#SLEAPS) | [Sports](#sports)
Read Related Posts:
- [Resources & Therapies for Pain After Major Knee Surgery](https://achronicvoice.com/resources-therapies-pain-after-major-knee-surgery/)
- [How to Use the 7 Dimensions of Wellness to Thrive with Chronic Pain](https://achronicvoice.com/dimensions-of-wellness/)
- [40 People with Chronic Illness Share Their Best Pain Management Tips (What to Do if an Unforeseen Pain Flare Hits)](https://achronicvoice.com/pain-management-tips-pain-flare/)
- [Floatation Therapy: Did it do Anything for My Chronic Pain?](https://achronicvoice.com/floatation-therapy-chronic-pain-review-palm-avenue-float-club-singapore/)
- [YuYu Bottle Review: Hot Water Bottle for ‘Surround Warmth’ Pain Relief](https://achronicvoice.com/yuyu-bottle-review/)
1. **Medical ID** \- When I was first diagnosed with Antiphospholipid Syndrome, I was given a medical card that stated I was on warfarin. I was told to keep this card close to me at all times, in case of an emergency. I also have other medical cards in my wallet that state **[I have antibodies in my blood](https://achronicvoice.com/refused-treatment-hospital/)**, and that I have an annuloplasty band for a **[mitral valve repair.](https://achronicvoice.com/death-broken-heart/)** These are all important medical information, especially if you need a blood transfusion or emergency surgery done.
There is a risk of bleeding with surgeries, so my warfarin medication needs to be reversed. Having antibodies in the blood also means that they might need to filter blood from the blood bank for me, if they are unable to find an exact match (regardless of blood type). (**[Learn more about the reversal protocol for various anticoagulants here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#reversal)**.)
Whilst first responders should always check for such medical information that a person may be carrying, this might not always be the case during a frantic emergency situation. Thus, some people wear [medical IDs in the form of accessories such as bracelets or necklaces](https://www.amazon.com/s?k=medical+ID+accessories&crid=3YBAW5MXQ1AM&linkCode=ll2&tag=achronicvoice-20&linkId=ec14ace7c1a4ae4e591a8af1f896583d&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl). This can help to alert paramedics and hospital staff that the patient has a medical condition they need to take note of, such as Antiphospholipid Syndrome.
Also Read: [Antiphospholipid Antibodies](#APLS) | [Bleeding](#bleeding) | [Hospital Bag](#HospitalBag) | [Invisible Illness](#II) | [Surgery](#surgery)
1. **Menopause** \- Whilst there are not many studies done on APS in relation to menopause, it is a [period of immune changes](https://www.sciencedirect.com/science/article/abs/pii/S1521661613000454) within the body, one of which is a decrease in oestrogen (Bove, 2013).
2. **Menstruation** \- Women with Antiphospholipid Syndrome can have [heavier periods](https://aps-support.org.uk/self-help/living-with-aps/aps-and-womens-health) or see blood clots whilst menstruating (APS Support UK, n.d.). It is also important to be aware of ovarian cyst ruptures, as these are extremely painful and can be life-threatening. **[I’ve had the misfortune of experiencing them twice](https://achronicvoice.com/refused-treatment-hospital/)**, and am now on a progestin-based birth control as a preventive method. **[Learn more about menopause, menstruation, birth control and ovarian cyst ruptures in this post.](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/)**
3. **Mental Health - [Read this post for more information on neuropsychiatric symptoms in APS](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#neuropsychiatric).**
4. **Movement** \- It’s important to keep on your toes when you live with a blood clotting disorder like Antiphospholipid Syndrome! This is especially true if you’re taking a long flight, due to the change in cabin pressure, dehydration, and cramped spaces. Even healthy people can get DVTs on flights, so it is even more vital for a person with APS to keep moving every hour. You can **[read more travel tips in my post here](https://achronicvoice.com/top-tips-travelling-chronic-illness-disability/)**, and **[learn more about flights and DVTs in this post](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#DVT)**.
5. **Magnetic Resonance Imaging (MRI)** \- An [MRI procedure](https://www.mayoclinic.org/tests-procedures/mri/about/pac-20384768) is the one where they slide you into a tube-like casing, then start to blare a sequence of loud, weird sounds at you (Mayo Clinic, 2023c). Unlike CT scans or x-rays, they do not use radiation but powerful magnets, so if you have metallic implants, do let the technician know. They produce three-dimensional images of anatomy in greater detail than x-rays or CT scans.
MRIs are most frequently used to diagnose brain and spinal cord issues, but can also be used to check on heart or blood vessels, bones and joints, as well as irregularities in other organs such as the kidney, uterus and prostate.
In particular, [spin echo (SE) imaging is effective for intracardiac masses](https://www.jrheum.org/content/29/12/2658.short), such as thrombi and tumours. MRIs are also able to differentiate tumours and age of blood clots more clearly than echocardiograms. These insights can be useful for the formulation of treatment plans (Erkan et al., 2002).
It is also interesting to note that MRI findings of certain APS patients are similar to those with Multiple Sclerosis (MS). Whilst further studies need to be done, [Stosic et al. (2010) conclude in a small MRI study that](https://link.springer.com/article/10.1007/s00415-009-5264-6):
> “The release of phospholipid antigenic determinants during tissue injury may play an important role in the epitope spreading of immune response and the generation of APLAs in MS that may lead to secondary ischemic damage.”
**[Learn more about the cardiovascular, musculoskeletal and systemic implications in relation to APS in this post.](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/)**
Also Read: [Blood Clots](#BloodClots) | [Coagulation](#coagulation) | [Ultrasound](#SectionU) | [X-Rays](#SectionX)
1. **‘Muscular Sprains’** \- Muscular sprains are something to be aware of, especially around your chest area, as they might indicate a Pulmonary Embolism (PE). As someone who has experienced the full works of haemorrhages, blood clots, tendon ruptures and muscle sprains, I can usually tell which is what by now.
For someone who is newly diagnosed with APS, it can be difficult to differentiate between a regular muscular sprain and a blood clot. I am here to tell you to please simply err on the side of caution, and visit your specialist or the ED/A&E right away.
When **[I experienced a PE at 17](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)**, I had initially visited a General Practitioner (GP) who brushed it off as a muscular sprain. I only went to the A&E two days later and by then, it was a little too late. This major health crisis **[triggered a cascade of autoimmune disorders](https://achronicvoice.com/bloody-mutations-lupus/)** that might have stayed dormant otherwise. **[Read more about pulmonary embolisms and other manifestations of APS here.](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#pulmonary)**
Also Read: [Catastrophic Antiphospholipid Syndrome](#CAPS) | [Haemorrhage](#haemorrhage) | [Lupus](#SLEAPS)
Pin to Your Antiphospholipid Syndrome Diagnosis & Resource Guide Boards:
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[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## N is for NSAIDs, Neuropsychiatric Manifestations & Non-Criteria APS
### NSAIDs
Does “Ibuprofen”, “Naproxen” or “Aspirin” ring a bell? These all fall under a class of [medications called NSAIDS](https://www.health.harvard.edu/diseases-and-conditions/bad-mix-blood-thinners-and-nsaids) (Non-Steroidal Anti-Inflammatory Drugs) (Harvard Medical School, 2019b).
In brief, NSAIDs interfere with the blood clotting process through the inhibition of platelet function. They also [increase the risk for gastrointestinal bleeding and peptic ulcers](https://australianprescriber.tg.org.au/articles/peptic-ulcer-disease-and-non-steroidal-anti-inflammatory-drugs.html) due to the way they are metabolised (Drini, 2017). Thus, taking NSAIDs can pose as an additional risk when you are already on an anticoagulant drug. [**Learn more about NSAIDs here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#NSAIDs).
Also Read: [Aspirin](#aspirin) | [Blood Clots & Bruising](#SectionB) | [Coagulation](#coagulation) | [Painkillers](#painkillers) | [Platelets](#platelets) | [Warfarin](#SectionW)
### Neuropsychiatric Manifestations
[Neuropsychiatry](https://www.rcpsych.ac.uk/become-a-psychiatrist/choose-psychiatry/what-is-psychiatry/types-of-psychiatrist/neuropsychiatry) is a field of medicine that involves both neurology and mental illness (Royal College of Psychiatrists, n.d.). Whilst a lot more research still needs to be done, [Antiphospholipid Syndrome is now recognised as a major neurological disease](https://academic.oup.com/pmj/article-abstract/79/928/81/7045590) as well. Neurological events include: strokes, TIAs, migraine, headaches, brain fog/cognitive dysfunction and much more (Hughes, 2003).
[**I write about neuropsychiatric manifestations in APS patients more comprehensively here**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#neuropsychiatric).
Also Read: [Cognitive Function](#cognitive) | [Transient Ischaemic Attacks](#TIA) | [Strokes](#strokes)
Read Related Posts:
- [365 Mindfulness Journaling Prompts for Self-Improvement](https://achronicvoice.com/365-mindfulness-journaling-prompts-for-self-improvement/)
- [Chronic Illness Quotes to Inspire, Motivate, Grieve, Hope & Laugh About](https://achronicvoice.com/chronic-illness-quotes/)
- [Today is Not a Good Day to Make Decisions (and That’s Okay)](https://achronicvoice.com/today-is-not-a-good-day/)
- [Why it Feels Like Suicide is an Option When You Live with Chronic Illness or Disability](https://achronicvoice.com/suicide-chronic-illness/)
- [Is Seeking Help for Your Mental Health Worth It?](https://achronicvoice.com/mental-health-worth-it/)
### Non-Criteria APS / Seronegative APS
This is a widely debated topic amongst researchers and even amongst patients. In basic terms, non-criteria APS (NC-APS) indicates that a person may have Antiphospholipid Syndrome, but does not meet the formal criteria for it ([**see the section on Antiphospholipid Syndrome**](#SectionA) for what those are). [Non-criteria APS patients can present with clinical manifestations](https://www.sciencedirect.com/science/article/abs/pii/S1568997220302664) such as strokes, migraine, livedo reticularis, thrombocytopenia and others, yet blood tests yield a negative result for apLs (Pires da Rosa et al., 2020).
[Cervera et al. (2012) makes a case for and against testing for so-called non-criteria APS antibodies](https://www.sciencedirect.com/science/article/abs/pii/S1568997211002370), and concludes with a rough protocol to follow in terms of diagnosis. For instance, serum IgG anti-vimentin/cardiolipin antibodies can be found in a large number of NC-APS patients, and in almost all patients who have a confirmed APS diagnosis. However, antiphospholipid antibodies (aPLs) can also be transient in nature. These are just two examples from Cervera et al.’s (2012) paper for and against testing for NC-APS.
[**Read this post for all the various manifestations that Antiphospholipid Syndrome can present as**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/).
#### Types of Non-Criteria APS Antibodies
Liu et al. (2022) investigates [seven of these non-criteria antiphospholipid antibodies](https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2022.972012/full), which include:
1. anti-phosphatidylserine/prothrombin (aPS/PT) antibodies IgG/IgA/IgM,
2. anti-phosphatidylethanolamine antibodies (aPE) IgG/IgA/IgM,
3. anti-Annexin V antibodies (aAnnexinV) IgG/IgA/IgM,
4. anti-phosphatidylserine antibodies (aPS) IgM,
5. aPS IgG,
6. antibodies directed against a mixture of phospholipids (APhL) IgG, and
7. APhL IgM
They conclude that the highest prevalence of non-criteria aPLs was aAnnexinV, whilst APhL IgG and aPS IgM had the highest specificity, and aPS/PT had the highest Youden index for diagnostic value in terms of APS. Of these seven non-criteria aPLs, they further conclude that three in particular – APhL IgG, aPS/PT, and aPS IgG – might show potential as biomarkers for APS-related thrombosis events.
#### Classifications for ‘Seronegative’ & ‘Non-Criteria’ APS
In a [small study of seronegative APS patients](https://academic.oup.com/rheumatology/article/61/2/826/6273199?login=false), Truglia et al. (2022) found that 69% of them tested positive for at least one non-criteria test. Interestingly, [seronegative APS patients who tested positive for aVim/CL IgA](https://academic.oup.com/cei/article/205/3/326/6431041) showed a higher prevalence of arterial thrombosis, whilst APS patients who tested positive for aVim/CL IgG showed a higher prevalence of pregnancy morbidity and thrombocytopenia (Capozzi et al., 2021).
To complicate matters, definitions and terms can vary from paper to paper, and different laboratories may produce different results. According to Cervera et al. (2012), even anti-β2GPI, which is a known antiphospholipid antibody, is only tested in a small number of labs. Much of the literature for non-criteria APS also focuses on obstetric patients, where majority seem to be treated as ‘regular’ APS patients, despite being seronegative (Pires da Rosa et al., 2020).
As a result, Pires da Rosa et al. (2020) further proposes [breaking down non-criteria APS into the following four categories](https://www.sciencedirect.com/science/article/abs/pii/S1568997220302664): “Seronegative APS”, “Clinical non-criteria APS”, “Incomplete laboratory APS” and “Laboratory non-criteria APS”. This might help to break this quandary down into more identifiable parts for further research.
Also Read: [Anti-β2GPI](#AntiB2GPI) | [Anticardiolipin Antibodies](#anticardiolipin) | [False Negative/Positive](#FalseNegPos) | [INR](#INR) | [Phospholipids](#phospholipids)
### Other Terms for “N” and APS are:
1. **Nexplanon – [Read more about Nexplanon and birth control here.](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#BirthControl)**
2. [**NOACs** (novel oral anticoagulants)](https://www.jthjournal.org/article/S1538-7836%2822%2912799-6/fulltext) \- This is another name for DOACs, and is also the name that has been used for the longest amount of time. However, for the purpose of clarity, the term “DOAC” is preferred (Barnes et al., 2015). **[Learn more about DOACs in this post](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#DOACs)**.
3. **Numbness** \- Numbness, or a “pins and needles” sensation, can be a sign of poor blood circulation, or one of many symptoms of a blood clot. Please seek medical attention immediately if you think you might have a blood clot, as the consequences can be deadly. For example, half of my entire body went limp and numb when **[I experienced a Transient Ischaemic Attack](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)** (“mild stroke”).
Also Read: [Blood Clots & Bleeding](#SectionB) | [Coagulation](#coagulation) | [Cognitive Function](#cognitive) | [Haemorrhage](#haemorrhage) | [Transient Ischaemic Attack](#TIA) | [Strokes](#strokes)
Pin to Your Antiphospholipid Syndrome Diagnosis Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## O is for Oestrogen, Ovarian Cyst Ruptures & Ophthalmologic Manifestations
### Oestrogen
[Oestrogen (or estrogen) is a steroid hormone associated with menstruation](https://www.ncbi.nlm.nih.gov/books/NBK538260/) that can increase the risk of both arterial and venous thrombosis (Delgado & Lopez-Ojeda, 2023). These are [often used in contraceptives or as postmenopausal hormone replacement therapy](https://www.ahajournals.org/doi/full/10.1161/hq0202.102318) (Rosendaal et al., 2002). If you have APS, it is important to use alternative therapies such as contraceptives that are progestin-based instead.
### Ovarian Cyst Rupture
[Ovarian cyst ruptures](https://www.mayoclinic.org/diseases-conditions/ovarian-cysts/symptoms-causes/syc-20353405) happen when a corpus luteum cyst occurs after the egg is released, and the opening becomes blocked in the corpus luteum (Mayo Clinic, 2023b). For women with APS who are on anticoagulants, this can result in internal bleeding and is a medical emergency. [**I nearly died from these ovarian cyst ruptures, which you can read all about here**](https://achronicvoice.com/refused-treatment-hospital/).
[**Learn more about oestrogen and ovarian cyst ruptures in this post**](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#menstruation).
Also Read: [Blood Clots & Bleeding](#SectionB) | [Free Fluid](#FreeFluid) | [Haemorrhage](#haemorrhage) | [Hospital Bag](#HospitalBag)
### Ophthalmologic / Ocular Manifestations
[Ophthalmology](https://www.aao.org/eye-health/tips-prevention/what-is-ophthalmologist) is a field in medicine with many sub-specialties, and deals with the eyes and vision, their functions and diseases (Churchill & Gudgel, 2024). It is important to be aware that there are a number of [ocular and neuroophthalmic manifestations that can happen in APS patients](https://www.sciencedirect.com/science/article/abs/pii/S1568997206002138), including but not limited to: retinal arteritis, retinal venous occlusion, ischemic optic neuropathy, transient loss of vision, and diplopia (Suvajac et al., 2007).
You can [**learn more about ocular manifestations in Antiphospholipid Syndrome here**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#ocular).
### Other Terms for “O” and APS are:
1. **Osteopenia & Osteoporosis** \- Osteopenia refers to bone density loss, whilst osteoporosis to weak, brittle bones. Both are linked to [bone mineral density](https://www.health.harvard.edu/womens-health/osteopenia-when-you-have-weak-bones-but-not-osteoporosis), which is measured by a bone density test (Harvard Medical School, 2021b). Long-term warfarin use has been found to be a [major contributor to osteoporosis](https://www.medsci.org/v17p0471.htm) (Yokoyama et al., 2020). **[Learn more about osteopenia, osteoporosis, and other musculoskeletal manifestations in APS patients here.](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#musculoskeletal)**
Also Read: [Calcium](#calcium) | [Vitamin D](#VitaminD) | [Vitamin K](#SectionK) | [Warfarin](#SectionW)
1. **Omega Oils** \- Omega oils come in omega-3, 6 and 9\. [Omega-3 fatty acids](https://www.sciencedirect.com/science/article/abs/pii/S1098882318300480) are healthy fats that cells in the body require for proper functioning (Adili et al. 2018). They are also anti-inflammatory, and are beneficial for cardiovascular and neurological health. They come in three forms, which can be found in seafood such as fatty fish (e.g. salmon and mackerel), and plants (e.g. flaxseed and chia seeds).
[Omega-6 fats](https://www.health.harvard.edu/newsletter%5Farticle/no-need-to-avoid-healthy-omega-6-fats) are mainly found in vegetables, and also help to lower cholesterol when balanced with omega-3\. Good sources of omega-6 polyunsaturated fats include: sunflower oil, soybean oil and evening primrose oil (Harvard Medical School, 2019a). [Omega-9 fatty acids](https://www.sciencedirect.com/science/article/pii/S1687157X23009071) can be found in plant food sources such as macadamia nuts, soybean oil, olive oil and sunflower oil. They also bear anti-inflammatory and anti-cancer properties (Farag & Gad, 2022).
Whilst generally safe for the average person, [certain omega-3 and omega-6 fatty acids have also been shown to have antiplatelet effects](https://openheart.bmj.com/content/6/1/e001011), which can prolong bleeding time especially for patients who are on anticoagulants (DiNicolantonio & OKeefe, 2019).
[According to Adili et al. (2018)](https://www.sciencedirect.com/science/article/abs/pii/S1098882318300480):
> “\[omega\]-3 and \[omega\]-6 polyunsaturated fatty acids are an essential component of the platelet phospholipid membrane and play a major role in regulation of platelet function. Dietary supplementation with \[omega\]-3 or \[omega\]-6 PUFAs may alter platelet lipid membrane phospholipid composition and affect platelet function, which, in turn, may alter the progression and thrombotic complications of cardiovascular disease.”
As such, it is better to get your nutrition from omega oils via natural food sources, as fish oil capsules and the likes tend to have a higher potency. Should you insist on or need such supplements, do discuss with your doctor so that they can adjust your medications accordingly.
Also Read: [Diet](#diet) | [Green Tea](#GreenTea) | [Vitamin K](#SectionK) | [Platelets](#platelets) | [Quinoa](#SectionQ) | [Saponins](#saponins) | [Supplements](#supplements)
Pin to Your Antiphospholipid Syndrome Diagnosis Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## P is for Pulmonary Embolism, Pregnancy, Phospholipids & Primary Antiphospholipid Syndrome
### Pulmonary Embolism (PE)
A [pulmonary embolism](https://my.clevelandclinic.org/health/diseases/17400-pulmonary-embolism) (PE) is when a blood clot travels to lodge itself in your lung, thereby restricting blood flow (Cleveland Clinic, 2024a). [**When I had a pulmonary embolism at 17**](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/), I experienced difficulty breathing and could not lie down flat. The GP I had seen had carelessly misdiagnosed it as a muscular cramp, so I waited for two days before rushing to the A&E – barely alive.
A pulmonary embolism is a medical emergency, so if you are experiencing chest pains that will not recede, please just err on the side of caution and visit the A&E/ED. [**Learn more about pulmonary embolisms here**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#PE).
Also Read: [Blood Clots & Bleeding](#SectionB) | [Haemorrhage](#haemorrhage) | [Hospital Bag](#HospitalBag) | [Lupus & Lupus Anticoagulant](#SectionL) | ‘[Muscular Sprains](#sprains)’
Read Related Posts:
- [12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?)](https://achronicvoice.com/body-gone-rogue-invisible-illness/)
- [A Roundup of Biggest Pain Flare Triggers (from 40 People with Chronic Illness)](https://achronicvoice.com/pain-flare-triggers/)
- [Would You Rather: Have an Invisible Illness or a Visible Disability?](https://achronicvoice.com/invisible-illness-disability/)
- [What’s it Like to Live with Invisible Illness in Singapore? (7 Locals Share Their Thoughts)](https://achronicvoice.com/invisible-illness-singapore-locals/)
- [Sometimes, Physical Pain Isn’t the Worst Part About Chronic Illness](https://achronicvoice.com/pain-chronic-illness/)
### Pregnancy in APS Patients
Pregnancy with Antiphospholipid Syndrome is a topic that needs its own article; [**I cover pregnancy with APS in detail in this post**](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#pregnancy). For a quick overview, [this paper by Schreiber and Hunt](https://www.sciencedirect.com/science/article/abs/pii/S0049384819303664#bb0055) (2019) does an excellent job of listing out the management of APS in pregnancy.
Also Read: [Antiphospholipid Antibodies](#APLS) | [Enoxaparin](#enoxaparin) | [Lupus & Lupus Anticoagulant](#SectionL) | [Paediatric APS](#paediatric)
### Phospholipids
[Phospholipids](https://www.mdpi.com/1422-0067/14/6/11767) are a class of lipids (fatty compounds) that are part of all major tissues in the body, and are concentrated in organs that require neuronal (nerve) interactions (Pichot et al., 2013).
[According to Rege and Mackworth-Young (2015)](https://www.tandfonline.com/doi/full/10.3402/tdp.v3.25452):
> “Phospholipids are the major component of cell membranes. These molecules constitute approximately 60% of the dry weight of the brain and play an important role in neurodevelopment.” ….. “Phospholipids also facilitate signal transduction responses to neurotransmitters, such as serotonin, dopamine, glutamate, and acetylcholine that play a key role in the pathophysiology of psychiatric disorders.”
In basic terms, people with APS produce antiphospholipid antibodies (aPLs) that attack phospholipids, which leads to blood clotting issues. Phospholipids are also major components of cell membranes, including those in the brain. This means that beyond the blood, [**Antiphospholipid Syndrome can also lead to systemic issues, which I expand on in this post**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#systemic).
Also Read: [Antiphospholipid Antibodies](#APLS) | [Blood Clots & Bleeding](#SectionB) | [Coagulation](#coagulation)
### Primary Antiphospholipid Syndrome (PAPS)
[Primary Antiphospholipid Syndrome](https://journals.sagepub.com/doi/abs/10.1177/096120339400300417) (PAPS) is a term that mainly refers to patients who only have APS as an autoimmune disease, although it can morph to secondary APS (SAPS) further down the road. There are some clinical differences between PAPS and SAPS patients, such as valve lesions, which occur more frequently in PAPS patients (Asherson & Cervera, 1994).
In a small [study of 60 Egyptian patients](https://www.sciencedirect.com/science/article/pii/S1110116422000989), it was found that PAPS patients were more likely to have cutaneous manifestations, and also higher levels of β2 glycoprotein I IgG, as compared to SAPS patients (Morad et al., 2022). In [another European study of 1000 patients](https://onlinelibrary.wiley.com/doi/abs/10.1002/art.10187), the results showed that SAPS patients were more prone to arthritis, livedo reticularis, thrombocytopenia and leukopenia (Cervera et al., 2002).
***What is key to keep in mind with an Antiphospholipid Syndrome diagnosis however, is that we can experience any symptom regardless of whether it is primary or secondary.*** So don’t hesitate to seek professional advice and care should you feel that something is not quite right. As my rheumatologist has mentioned to me – I may have secondary APS, yet my clinical manifestations thus far has been worse than even triple positive patients.
[**Read this post to learn more about how Antiphospholipid Syndrome can affect the entire body**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/), from the blood to skin, eyes, lungs, brain, heart and much more.
Also Read: [Anti-β2GPI](#AntiB2GPI) | [Catastrophic APS](#CAPS) | [Non-Criteria/Seronegative APS](#NCAPS) | [Secondary APS](#SAPS) | [Triple Positive](#TriplePos)
### Other Terms for “P” and APS are:
1. **Paediatric APS** \- If APS is rare, then paediatric APS is even rarer. Not much is known about it, and there are no validated guidelines or criteria to help manage it better as of yet.
According to Basaran et al. (2020), [children with APS tend to have more blood clots in the brain and ischaemic strokes](https://www.hss.edu/conditions%5Ftop-ten-points-pediatric-antiphospholipid-syndrome.asp), as compared to adults. Children with APS are also more likely to have a Lupus comorbidity, and the frequency of occurrence is similar in girls and boys. Acquired risk factors in adults are also generally not applicable in children (e.g. atherosclerosis, use of oral contraceptives, smoking, etc), and thus test results might differ.
In the [15th International Congress on Antiphospholipid Antibodies Task Force on Pediatric Antiphospholipid Syndrome Report](https://link.springer.com/chapter/10.1007/978-3-319-55442-6%5F16) (Soybilgic et al., 2017), they also note that platelets in infants have decreased function, and whilst certain coagulation proteins reach adult levels by age 5, in newborns this is different qualitatively. [Paediatric strokes](https://www.cureus.com/articles/181587-pediatric-antiphospholipid-syndrome-presenting-as-a-massive-stroke-a-case-report/) are also extremely rare, but can happen to children with APS (Marzooq, 2023).
Also Read: [Coagulation](#coagulation) | [Lupus](#SLEAPS) | [Platelets](#platelets) | [Transient Ischaemic Attack](#TIA) | [Strokes](#strokes) | [Young Adults](#SectionY)
1. **Painkillers** \- There are a [few different classes of painkillers](https://www.ncbi.nlm.nih.gov/books/NBK560692), such as paracetamol/acetaminophen, NSAIDs, opioids and local anesthetics. Some antidepressants and antiepileptics are also used to manage certain types of pains (Queremel Milani & Davis, 2023).
If you have an Antiphospholipid Syndrome diagnosis, it is important to note that NSAIDs (e.g. ibuprofen, naproxen, aspirin, etc) not only interact with warfarin, but can also [cause gastrointestinal bleeding and ulcers](https://australianprescriber.tg.org.au/articles/peptic-ulcer-disease-and-non-steroidal-anti-inflammatory-drugs.html) (Drini, 2017).
Thus, I only take NSAIDs when I have a high fever – but not before letting my healthcare team know beforehand. I also developed an allergy to paracetamol after having taken it too often during **[my pulmonary embolism episode](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)**, and am only left with opioids for managing my Lupus and Sjögren disease pain flares. **[Learn more about NSAIDs and Antiphospholipid Syndrome here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#NSAIDs)**.
Also Read: [Bleeding](#bleeding) | [Cannabidiol (CBD)](#CBD) | [Cupping, Traditional Chinese Medicine (TCM) & Chiropractor](#cupping) | [Haemorrhage](#haemorrhage) | [Massages](#massages)
Read Related Posts:
- [Why Painkillers are One of My Biggest Allies for a Decent Quality of Life](https://achronicvoice.com/painkillers-quality-life/)
- [How to Use the 7 Dimensions of Wellness to Thrive with Chronic Pain](https://achronicvoice.com/dimensions-of-wellness/)
- [40 People with Chronic Illness Share Their Best Pain Management Tips (What to Do if an Unforeseen Pain Flare Hits)](https://achronicvoice.com/pain-management-tips-pain-flare/)
- [Resources & Therapies for Pain After Major Knee Surgery](https://achronicvoice.com/resources-therapies-pain-after-major-knee-surgery/)
- [So This is What a Tonic Clonic Seizure Feels Like](https://achronicvoice.com/tonic-clonic-seizure/)
1. **Paper Cuts!** \- Yes, I had to include this one. I once had a paper cut whilst travelling overseas, and it wouldn’t stop bleeding for hours. So I bandaged it up real tight, and woke up the next day to a blue, numb thumb. I panicked and thought that I might need to get it amputated, because I could no longer feel it at all. Thankfully it settled down, blues, cuts and all.
P.s. Don’t forget to bring a bottle of ‘Stop Bleed’ spray or plasters, for situations like these whilst travelling! You can also **[check out my top tips for travelling with chronic illness and disability in this post](https://achronicvoice.com/top-tips-travelling-chronic-illness-disability/)**.
Also Read: [Bleeding](#bleeding) | [Haemorrhage](#haemorrhage) | [NSAIDs](#NSAIDs) | [Numbness](#numb) | [Stop Bleed First Aid](#StopBleed) | [Travel](#travel)
1. **Periods – [Read more about menstruation and Antiphospholipid Syndrome here](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#menstruation).**
2. **Platelets** \- Platelets are also known as thrombocytes, and are made in the bone marrow. They make up part of our blood, and play an important role in the coagulation process. Certain conditions can contribute to a low platelet count, such as thrombocytopenia and chemotherapy. Apart from donating blood, you can also donate platelets, which many patients need in order to survive (American National Red Cross, n.d.). (**[Learn more about thrombocytopenia here](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#thrombocytopenia)**.)
[According to Baroni et al. (2017)](https://www.tandfonline.com/doi/abs/10.1080/09537104.2017.1280150):
> “Although underestimated, platelets may be involved in APS and its thrombotic manifestations, especially arterial, in several ways. Thrombocytopenia is the most relevant non-criteria manifestation of APS, possibly caused by direct binding of anti-β2-GPI antibodies or anti-β2-GPI–β2-GPI complexes.”
Meaning to say that anti-beta2-glycoprotein 1, an antiphospholipid antibody, directly interacts with platelets. According to Huang et al. (2021), this [increased risk for arterial thrombosis](https://www.mdpi.com/1422-0067/22/8/4200) is due to upregulation of plasma levels of active VWF (Von Willebrand Factor), which promotes platelet activation. The lupus anticoagulant (LA) was also found to have the strongest effect on arterial thrombosis.
Other pathways and cell types have also been linked to [platelet activation and Antiphospholipid Syndrome](https://www.mdpi.com/2077-0383/13/3/741). On top of that, platelet dysfunctions may also contribute to antiphospholipid antibodies (Tohidi-Esfahani et al., 2024).
Also Read: [Antiphospholipid Antibodies](#APLS) | [Anti-β2-GPI](#AntiB2GPI) | [Coagulation](#coagulation) | [Lupus Anticoagulant](#LA) | [Non-Criteria/Seronegative APS](#NCAPS)
1. **Point-of-Care Testing** \- [Point-of-care (POC) testing](https://www.cda-amc.ca/2-point-care-testing) simply refers to a medical test that isn’t done in a laboratory. You might be familiar with some of them, such as pregnancy test kits, and blood glucose tests that patients with diabetes monitor on a regular basis (Canadian Agency for Drugs and Technologies in Health \[CDA-AMC\], 2024). **[For more information, read the section on Roche](#roche)**.
2. **Progesterone** \- Progesterone is a reproductive hormone that is produced naturally in the body by both sexes. [Progestin](https://my.clevelandclinic.org/health/treatments/24838-progestin) is the synthetic form of progesterone that is used in some forms of contraception methods or devices (Cleveland Clinic, 2023a). **[Learn more about hormones and birth control here](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#BirthControl)**.
3. **Psychological & Psychiatric Manifestations - [I detail neuropsychiatric manifestations in APS patients, which you can read more about here](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#neuropsychiatric).**
Read Related Posts:
- [The Savagery of Panic Attacks & The Saving Grace of Internet Friends](https://achronicvoice.com/panic-attacks-internet-friends/)
- [Clinical Depression: Diagnosed 10 Years Late](https://achronicvoice.com/depression-late/)
- [Is Seeking Help for Your Mental Health Worth It?](https://achronicvoice.com/mental-health-worth-it/)
- [Why it Feels Like Suicide is an Option When You Live with Chronic Illness or Disability](https://achronicvoice.com/suicide-chronic-illness/)
- [365 Mindfulness Journaling Prompts for Self-Improvement](https://achronicvoice.com/365-mindfulness-journaling-prompts-for-self-improvement/)
1. **Pulmonary Manifestations** \- [According to Espinosa et al. (2002)](https://ard.eular.org/article/S0003-4967%2824%2909424-X/abstract):
> “Patients with antiphospholipid syndrome (APS) may develop a broad spectrum of pulmonary disease. Pulmonary thromboembolism and pulmonary hypertension are the most common complications, but microvascular pulmonary thrombosis, pulmonary capillaritis, and alveolar haemorrhage have also been reported.”
Thus, APS can affect the lungs in a variety of ways that range from blood clotting to bleeding events. Always seek medical attention immediately should you suspect a blood clot in the lung, as this can be life-threatening. **[Learn more about APS pulmonary manifestations here](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#pulmonary)**.
Pin to Your Antiphospholipid Syndrome Diagnosis & Health Guide Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## Q is for Quinoa
I didn’t know that quinoa could be ‘dangerous’, until I ate a plateful of this healthy grain, and woke up the next day to a giant bruise that spanned my entire upper arm. I discovered that the hulls of quinoa seeds contain [saponins](https://onlinelibrary.wiley.com/doi/10.1155/2015/876426), which is an anticoagulant (Chen et al., 2015).
Some other foods that contain saponins and thus, have a blood thinning effect (although to varying effects) are: soymilk, asparagus, strawberry, alfalfa, sea cucumber (yes, we Chinese love it), and more. For more information, [read this paper in the “Food Research International” journal by Cheok et al. (2014)](https://www.sciencedirect.com/science/article/abs/pii/S096399691400074X).
In my personal experience, [alfalfa sprouts are a big ‘no’ more due to Lupus and inflammatory reasons](https://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/) (Johns Hopkins Lupus Center, n.d.-a). Asparagus, sea cucumber, strawberries and the likes seem to be okay for me. I moderate the amount of soybean products I consume.
***What your own body can and cannot tolerate is greatly dependent on your own genetics, allergies, comorbidities, diet, etc, so I cannot speak for you.*** It’s a shame though, because I actually like a lot of these foods, and they’re supposed to be good for you! You can [**learn more about warfarin interactions here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#WarfarinInteractions).
Also Read: [Alcohol](#alcohol) | [Diet](#diet) | [Green Tea](#GreenTea) | [Juicing](#SectionJ) | [Vitamin K](#SectionK) | [Lupus & Lupus Anticoagulant](#SectionL) | [Omega Oils](#OmegaOils) | [Saponins](#saponins)
Pin to Your Antiphospholipid Syndrome, Food & Nutrition Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## R is for Roche, Research & Reversal
### Roche
Roche is a medical company that sells INR self-test machines called “CoaguChek®”. Many Afib (atrial fibrillation) and Antiphospholipid Syndrome patients who take warfarin use these machines to monitor their INR at home, or whilst on the go. It is important to note that Afib patients who are on warfarin differ from APS patients, as the former group may not have aPL antibodies that may further interfere with the INR reading.
There is some [debate as to the accuracy of the CoaguChek](https://journals.lww.com/poctjournal/abstract/2017/12000/accuracy%5Fof%5Fcoaguchek%5Fxs%5Fin%5Fpatients%5Fwith.3.aspx) (Taylor et al., 2017). This [may be especially true for APS patients with elevated anti-β2GPI antibodies and are positive for lupus anticoagulant](https://www.thieme-connect.com/products/ejournals/abstract/10.1160/TH05-06-0400) (Perry et al., 2017). It is also not recommended for patients who require an INR of 4 and above.
#### My Own Experiences with Roche’s CoaguChek XS & How I Use It
I personally own a [CoaguChek XS](https://diagnostics.roche.com/global/en/products/instruments/coaguchek-xs-ins-804.html) (Roche Diagnostics, n.d.), and it was actually Prof. Hughes who recommended that I consider one. ***I can only share my personal thoughts and experiences with it, but cannot speak for all APS patients.*** I first discussed it with my own rheumatologist, and we then used it to test my INR right after a venous blood draw on multiple occasions.
We learned that the range difference is about +-0.3 for me, which makes it fairly stable. [**I also have a heart rhythm disorder**](https://achronicvoice.com/heart-rhythm-disorder/), and my heart rhythm specialist has many Afib patients who take warfarin and use the machine. As she tells me, what’s important is that my INR falls within my target range, and not to hit a specific, exact number. This is because INR levels can shift throughout the day, and even with two venous blood draws or POC (point-of-care) tests done back to back.
My CoaguChek XS has been my faithful companion for many years now. Whenever I fear that my diet might have messed my INR up at home, I do a finger prick test to check. [**I also bring it along for all my travels**](https://achronicvoice.com/top-tips-travelling-chronic-illness-disability/), which gives me peace of mind when I don’t have regular access to my rheumatologist or blood tests.
Also Read: [Anti-ß2GPI](#AntiB2GPI) | [Antiphospholipid Antibodies](#APLS) | [INR](#INR) | [Lupus Anticoagulant](#LA) | [Point-of-Care Testing](#POC) | [Travel](#travel) | [Warfarin](#warfarin)
### APS Research
APS is a rare disease and more research is needed both on a global, scientific level, and also on a personal patient level (hence why I’m writing this resource page!). It is also crucial that you do your own research – from foods to medication interactions, symptom awareness and more. Every bit of knowledge can be useful in helping you manage an Antiphospholipid Syndrome diagnosis.
There is also [**promising research in relation to Antiphospholipid Syndrome, which I have documented and will keep updated in this post**](https://achronicvoice.com/latest-research-on-antiphospholipid-syndrome/).
### Reversal of Anticoagulants
Wait… but isn’t Antiphospholipid Syndrome a blood ***clotting*** disorder? Well, at present, the only management for APS is through the use of anticoagulants. These only ‘thin’ the blood, but they do not fix the root, autoimmune issue.
As a result, APS patients on blood thinners can suffer from excessive bleeding or a haemorrhage. In some instances, this can lead to a life-threatening situation, such as an ovarian cyst rupture, or after an accident. In such cases, the blood ‘thinning’ effects of the anticoagulant medication(s) need to be reversed via a reversal/hemostatic agent. [**Learn more about reversal agents and the reversal protocol here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#reversal).
Also Read: [Blood Clots & Bleeding](#SectionB) | [Coagulation](#coagulation) | [Haemorrhage](#haemorrhage) | [Vitamin K ](#SectionK) | [Ovarian Cyst Rupture](#OCR) | ‘[Sticky Blood](#StickyBlood)’ | [Surgery](#surgery)
### Other Terms for “R” and APS are:
1. **Rare Disease** \- [Antiphospholipid Syndrome is a rare disease](https://link.springer.com/article/10.1007/s11926-021-01038-2), with only about 1 – 2 cases per 100,000 (Dabit et al., 2021). More diverse, population-based studies are still needed to learn more about it. Thus, raising awareness about it is extra important.
2. **Rashes / Urticaria** \- These are some skin manifestations that can happen with an Antiphospholipid Syndrome diagnosis. **[Learn more about APS dermatologic manifestations here.](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#skin)**
3. **Refractory APS** \- [Refractory Antiphospholipid Syndrome](https://www.sciencedirect.com/science/article/abs/pii/S156899721100098X) refers to cases where the patient is resistant to regular anticoagulation treatment, and can still thrombose despite being at an optimal INR range or medication dosage. Several alternative therapies such as LMWH (low molecular weight heparin), hydroxychloroquine and prednisolone have been used for various reasons, but there are currently no standardised treatment protocols for it (Scoble et al., 2011).
Here are [three case studies on anticoagulant-refractory thrombotic Antiphospholipid Syndrome from Cohen and Isenberg (2021)](https://www.sciencedirect.com/science/article/pii/S0006497121000793), should you be interested to learn more.
Also Read: [Catastrophic APS](#CAPS) | [Non-Criteria/Seronegative APS](#NCAPS) | [Primary APS](#PAPS) | [Secondary APS ](#SAPS)
1. **Rivaroxaban (Xarelto)** \- This is another type of DOAC under the factor Xa class. **[Learn more about DOACs such as rivaroxaban here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#DOACs)**.
Pin to Your Antiphospholipid Syndrome Diagnosis, Management & Treatment Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## S is for Strokes, Secondary APS, Surgery, Supplements & Saponins
### Strokes
There are [two types of strokes](https://www.cdc.gov/stroke/about/index.html) – ischaemic and haemorrhagic. An ischaemic stroke happens when a blood clot blocks an artery in the brain, thus restricting blood flow. A haemorrhagic stroke on the other hand, happens when a blood vessel within the brain itself bursts (CDC, 2024a). There is also something known as a ‘mini stroke’, or a transient ischaemic attack (TIA), where blood supply to the brain is temporarily disrupted. It was also [**my first manifestation of APS when I was 14**](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/).
If you’re more of a visual person, here’s a [video on strokes by the NHLBI](https://www.youtube.com/watch?v=UJ5aO4KmQ8M) (2020) that explains more:
A common framework for recognising the [signs and symptoms of a stroke](https://www.healthhub.sg/programmes/aap/stroke) is ‘F.A.S.T’, where the abbreviations represent (HealthHub, n.d.):
- **Face** drooping to one side
- **Arm** weakness
- **Speech** difficulty
- **Time** to call for medical help immediately
#### Strokes in APS Patients
Strokes are also one of the most feared consequences of Antiphospholipid Syndrome, and is particularly suspect when it happens in a young adult. According to Grimes et al. (2022):
> “It has been estimated that [one in five strokes and patients younger than 45 could be associated with APS](https://www.intechopen.com/chapters/80492) and some newer studies show that APL antibodies are present in approximately 14% of stroke patients. Persistently elevated APL seems to increase the risk for CV by at least fourfold.”
And according to Novotny (n.d.):
> “APS has up to five times higher prevalence among women. Symptom onset is usually between 30-40 years of age. [APS-related stroke represents up to 20% of stroke events in patients under 45 years of age](https://eso-stroke.org/antiphospholipid-syndrome-and-stroke/). In older patients, APS is less common, however, it is more prevalent in males, and stroke as a complication is more common.”
Whilst the epidemiological data varies in different papers, what one can definitely conclude is that an Antiphospholipid Syndrome diagnosis increases the chances of getting a stroke. Thus, it is important to do what you can to prevent one, such as maintaining good heart health and taking your medications as prescribed.
[**Learn more about strokes and transient ischaemic attacks (TIAs) in this post.**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#stroke)
Also Read: [Antiphospholipid Syndrome](#APS) | [Lupus Anticoagulant](#LA) | [Numbness](#numb) | ‘[Muscular Sprains](#sprains)’ | [Transient Ischaemic Attack](#TIA) | [Young Adults](#SectionY)
### Secondary APS
[Antiphospholipid Syndrome can be subdivided into three broad classifications](https://www.ncbi.nlm.nih.gov/books/NBK430980/), namely: Primary APS (PAPS), Secondary APS (SAPS) and Catastrophic APS (CAPS). PAPS is when patients only have an Antiphospholipid Syndrome diagnosis, whilst SAPS is when they have an associated autoimmune disorder such as SLE (Systemic Lupus Erythematosus). CAPS is when multiple blood clots occur simultaneously in various parts of the body in a short span of time, and has a high mortality rate (Bustamante et al., 2024).
[**Personally for me, it started out as PAPS, then morphed into SAPS**](https://achronicvoice.com/bloody-mutations-lupus/) (with Lupus, Sjögren’s disease and other chronic illnesses tailing along). Whilst APS and SLE are two different autoimmune disorders, their symptoms often overlap as well. There is also a [higher risk of developing SLE within the first 5 years](https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2021.654791/full) of an Antiphospholipid Syndrome diagnosis (Chen et al., 2021).
Having said that, these terms are merely classifications. APS patients in all categories (definitely in CAPS) can still thrombose, and should try to mitigate potential triggers. [**Learn more about primary and secondary manifestations in APS here**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/).
Also Read: [2023 ACR/EULAR APS Criteria](#EULAR) | [Catastrophic APS](#CAPS) | [Lupus & Lupus Anticoagulant](#SectionL) | [Non-Criteria/Seronegative APS](#NCAPS) | [Primary APS](#PAPS)
### Surgery & APS
It is vital to let your surgeon know that you are on anticoagulants before any surgery – even minor ones. This includes dental procedures, and deep tissue injections for vaccines. Healthcare professionals tend to avoid surgery with me unless it is absolutely necessary, as I am a high-risk patient for both blood clotting and bleeding incidents. The irony is that the risk for APS patients to clot during surgery can be higher than the risk from the surgical procedure itself.
[According to Kim et al. (2020)](https://journals.sagepub.com/doi/full/10.1177/0300060519896889):
> “When such patients undergo surgery, however, the underlying risk of thrombosis increases as a result of anticoagulant withdrawal, immobilization, and/or intimal injury. Conversely, there is also an increased risk of bleeding due to thrombocytopaenia, possible disseminated intravascular coagulation, or progression to catastrophic APS, as a result of excessive anticoagulation, surgery, and infection.”
#### Planned Surgeries
Before a planned surgery, your nurse clinician or doctor will do an anticoagulant reversal and conversion to LMWH (low molecular weight heparin) with you over the span of a few days. The LMWH is then paused about 24 hours before the surgery. This is in hope that the patient doesn’t bleed during surgery. Depending on the risk to the patient, LMWH and warfarin is then reintroduced accordingly. [**Learn more about LMWH and the reversal protocol in this post**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#enoxaparin).
#### Emergency Surgeries
Emergency surgeries can be extra complicated for APS patients. I personally have had one or two emergency surgeries done before. In general, they inject you with vitamin K and/or other coagulant drugs to bring your INR back to baseline, before performing the surgery. [Additional measures they may need to take are](https://publishing.rcseng.ac.uk/doi/10.1308/003588406X106496) to keep the patient hydrated, use a compression machine or stockings on the patient, and to get their body moving again as soon as possible (Agaba et al., 2006).
***Note that these are just a general idea on surgeries with APS; please work with your own medical team to provide the best care and surgical outcome for YOURSELF.***
Also Read: [Blood Clots & Bleeding](#SectionB) | [Coagulation](#coagulation) | [Injections](#injections) | [Vitamin K](#SectionK) | [Vaccinations](#vaccinations) | [Warfarin](#SectionW)
Read Related Posts:
- [What It Feels Like to be Suddenly Disabled](https://achronicvoice.com/suddenly-disabled/)
- [Knee Surgery for Spontaneous Bilateral Patellar Tendon Rupture: Weeks 1 – 6](https://achronicvoice.com/knee-surgery-spontaneous-bilateral-patellar-tedon-rupture-weeks-1-6/)
- [Must Haves After Knee Surgery to Stay Comfortable in Bed](https://achronicvoice.com/must-haves-after-knee-surgery-stay-comfortable-bed/)
- [Wound Care & What to Wear After Knee Surgery](https://achronicvoice.com/wound-care-what-to-wear-after-knee-surgery/)
- [Fun Things To Do While Recovering From Surgery: Hobbies, Crafts & Games](https://achronicvoice.com/fun-things-to-do-while-recovering-from-surgery-hobbies-crafts-games-part-3-5/)
### Supplements
Supplements are another controversial topic that gets people riled up. There are so many opinions on holistic healthcare, diet and supplements, with many people thinking that their method works best. This may be true – for them. Always remember that every person is different, including what works and doesn’t work. As human beings, we are all anomalies and enigmas, in that regard.
Anyway, in terms of research, this is [an interesting paper on APS and the following supplements](https://www.sciencedirect.com/science/article/abs/pii/S1521661623006125#bb0270): vitamin D, omega-3 fatty acids, coenzyme Q10, gingerol, and isoquercetin. They display anti-inflammatory, antioxidant and/or anticoagulation properties via different pathways (Kello & Cho, 2023).
These may be beneficial if your body is working as intended. But if you’re on anticoagulants for APS or immunosuppressants for other chronic illnesses, these might actually work against you instead, as they may either dampen or amplify the effects of your medications and/or illness. I will write a separate post with more details on supplements and APS when I can! For now, you can [**check this post out to learn all about medication interactions with Antiphospholipid Syndrome**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/).
Also Read: [Calcium](#calcium) | [Coumarin](#coumarin) | [Cupping, TCM & Chiropractor](#cupping) | [Vitamin D](#VitaminD) | [Herbs](#herbs) | [Juicing](#SectionJ) | [Vitamin K](#SectionK) | [Omega Oils](#OmegaOils) | [Zinc](#SectionZ)
Read Related Posts:
- [Oral Spray Vitamins: A Quick & Easy Way to Get Your Nutrients with Chronic Illness](https://achronicvoice.com/oral-spray-vitamins/)
- [Vitamin D & Vitamin K2: How They Boost Each Other in the Body](https://achronicvoice.com/vitamin-d-vitamin-k2/)
- [Dysphagia & Swallowing Problems (and How Oral Vitamin Sprays Can be of Help to You)](https://achronicvoice.com/dysphagia-oral-vitamin-sprays/)
- [The Causes & Dangers of Malabsorption & An Easy Way to Get Your Nutrients](https://achronicvoice.com/malabsorption-nutrients/)
- [The Annoying Thing About Living with Antiphospholipid Syndrome (My Personal Experiences)](https://achronicvoice.com/living-with-antiphospholipid-syndrome-personal-experiences/)
### Saponins & ‘Blood Thinning’ Foods
I am including saponins as a main category under “S” and Antiphospholipid Syndrome because many patients tend to focus on moderating vitamin K foods, but are less aware of blood thinning foods.
According to Olas et al. (2020):
> “\[Saponins\] exist as secondary metabolites, occurring frequently in dicotyledonous plants and lower marine animals. Plant saponin extracts or single [saponins have indicated antiplatelet and anticoagulant activity](https://www.mdpi.com/1420-3049/25/21/5171).”
Saponins also have the potential increase membrane permeabilisation and increase the bioavailability of certain drugs and vitamins (Olas et al., 2020). Another [study on Panax notoginseng saponins and warfarin interaction by Qian et al. (2022)](https://link.springer.com/article/10.1007/s13318-022-00753-0) also revealed that it increases PT/INR levels, as well as the blood concentration and exposure time of warfarin, through the inhibition of enzyme CYP3A4 in the liver.
#### Types of Saponins
[According to Oleszek and Oleszek (2021)](https://link.springer.com/referenceworkentry/10.1007/978-981-15-4148-3%5F34):
> “Based on number of chains attached to the aglycone, they can be categorized as monodesmosides, bidesmosides, or tridesmosides.”
“Triterpenoid saponins can be found in many legumes” (such as alfafa and lentils), ginseng roots, tea leaves, quinoa seeds and much more. Steroidal saponins on the other hand can be found in oats, yucca, ginseng roots, asparagus and more.
#### Health-Related Properties of Saponins
Saponins can be great for general health, as they have been found to possess “immunostimulatory, hypocholesterolemic, antitumor, anti-inflammatory, antibacterial, antiviral, antifungal, and antiparasitic” properties (Oleszek & Oleszek, 2021).
However, if you’re on warfarin treatment, then you might want to moderate foods that are high in saponins due to the antithrombotic effects. If you live with other autoimmune diseases, immunostimulatory products can often trigger your disease in undesirable ways as well. After all, your immune system is already over and not underactive 🙂
Also Read: [Bleeding](#bleeding) | [CYP2C9 Gene](#CYP2C9) | [Haemorrhage](#haemorrhage) | [Herbs](#herbs) | [INR](#INR) | [Vitamin K](#SectionK) | [Warfarin](#warfarin)
### Other Terms for “S” and APS are:
1. **2006 Revised Sapporo Criteria** \- The [initial Sapporo criteria](https://www.sciencedirect.com/science/article/pii/S1538783622121422) was put together in 1999 and subsequently revised in 2006, based on the insights gained from research and clinical practice. Some manifestations associated with APS, such as heart valve disease, thrombocytopenia and livedo reticularis, are not included in the 2006 revised Sapporo criteria (Miyakis et al., 2006).
A [review by Bobba et al. (2007) on the 2006 revised Sapporo criteria](https://www.jrheum.org/content/34/7/1522.short) also concluded that whilst it is an improvement in terms of face and content validity as compared to its predecessor, better reliability testing is still required. For the latest APS criteria guidelines, **[see the section on the 2023 ACR/EULAR APS Criteria](#EULAR)**.
2. **Seizures & Spasms - [Refer to this section on Neuropsychiatric Manifestations in this post](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#neuropsychiatric)**.
3. **Seronegative - [See the section on Non-Criteria APS](#NCAPS)**.
4. **Sexual Intercourse** \- You might be wondering if having an Antiphospholipid Syndrome diagnosis will impact your sex life. This is highly subjective, but you will need to be careful that it doesn’t get too rough, or risk plenty of bruises. It’s possible to get an ovarian cyst rupture if you are a female who is ovulating as well. **[Learn more about ovarian cyst ruptures and progestin-based contraceptives in this post](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#OCR)**.
In a very [small study of 11 male APS patients](https://journals.sagepub.com/doi/10.1177/0961203311427552), 50% of them were found to have moderate to severe erectile dysfunction as well. The causes may be multifactorial, and some speculation that thrombosis of penile vessels might contribute to it (Lopes Gallinaro et al., 2012).
Also Read: [Men](#men) | [Women](#women)
Read Related Posts:
- [Disability & Sex: Disabled People are Not Automatically Bad Sexual or Romantic Partners](https://achronicvoice.com/disability-sex-disabled-people/)
- [Would You Date a Person with Chronic Illness?](https://achronicvoice.com/dating-with-chronic-illness/)
- [How to Set Healthy Boundaries in Your Relationships with Chronic Illness](https://achronicvoice.com/healthy-boundaries/)
- [How to Have a Healthy Relationship with Your Body (Even with Chronic Illness)](https://achronicvoice.com/healthy-relationship-body-chronic-illness/)
1. **Singaporeans with APS** \- There have been a few interesting studies on Singaporeans, and the differences in clinical manifestations of APS in various ethnic groups. For example, [one study at Tan Tock Seng Hospital by Tan et al. (2009)](https://journals.sagepub.com/doi/abs/10.1177/0961203309103303) found that strokes were the most common manifestation of arterial thrombosis, more so in men than women. Malays and Indians were found to have a higher rate of venous thrombosis, and Indians had the highest rate ischaemic heart disease (IHD).
Also Read: [African Americans](#AfricanAmericans) | [Asians](#asians) | [Caucasians](#caucasians) | [Chinese Patients](#chinese) | [CYP2C9 Gene](#CYP2C9) | [Euro-Phospholipid Project](#europhospholipid) | [Genes](#genes)
Read Related Posts:
- [What’s it Like to Live with Invisible Illness in Singapore? (7 Locals Share Their Thoughts)](https://achronicvoice.com/invisible-illness-singapore-locals/)
- [Invisible in Singapore: What’s It Like to Live Here with Chronic Illnesses?](https://achronicvoice.com/singapore-chronic-illnesses/)
- [Floatation Therapy: Did it do Anything for My Chronic Pain? (Review of Palm Avenue Float Club, Singapore)](https://achronicvoice.com/floatation-therapy-chronic-pain-review-palm-avenue-float-club-singapore/)
- [Invisible Cities Linkup: Pros & Cons of Living with Chronic Illness in Your City](https://achronicvoice.com/invisible-cities-linkup/)
1. **SLE (Systemic Lupus Erythematosus)** \- Quite a number of patients with APS also have SLE (like me!). **[See the section on Lupus for more information](#SectionL)**.
2. **Snake Venom** \- Some snake venoms work by coagulation, and others by anticoagulation. The [dilute Russell viper venom time (dRVVT)](https://www.sciencedirect.com/science/article/abs/pii/B9781455722969000208) is in fact, widely used in laboratories to test for lupus anticoagulant (LA). The snake venom “activates coagulation factor X, which leads to the formation of a fibrin clot”. Lupus anticoagulant prolongs dRVVT through disruption of this process (Rand & Wolgast, 2013).
And according to Pengo et al. (2017):
> “[dRVVT is more sensitive than other global tests employed to detect LA](https://link.springer.com/protocol/10.1007/978-1-4939-7196-1%5F14) and is not affected by inhibitors of factor VIII or IX. The test is most successfully implemented if you observe three steps in its execution: screening, mixing, and confirmatory studies.”
[RVVT is also highly sensitive to anticoagulation drugs](https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.25606), including VKAs (vitamin K antagonists) and DOACs (direct oral anticoagulants), which means that tests may reflect a false negative or positive for LA whilst the patient is on anticoagulant therapy (Favaloro, 2019).
[Other snake venom tests used](https://news.hss.edu/new-antiphospholipid-syndrome-research-findings-presented-at-acr-convergence-2023/) is the prothrombin-activating Taipan snake venom time (TVST), and the Ecarin clotting time (ECT) confirmatory test. These tests are insensitive to VKAs, unlike the RVVT (Hospital for Special Surgery \[HSS\], 2023). And just for trivia’s sake, the Ecarin test is derived from the venom of the Indian saw-scaled viper, and the Taipan snake is the most venomous snake in the world!
**[You can also learn more about VKAs and DOACs in this post.](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#VKAs)**
Also Read: [2023 ACR/EULAR APS Criteria](#EULAR) | [False Negative/Positive](#FalseNegPos) | [Vitamin K](#SectionK) | [Lupus Anticoagulant](#LA) | [Non-Criteria/Seronegative APS](#NCAPS)
1. **Sports** \- People with APS need to avoid playing certain sports, namely [contact sports](https://www.gosh.nhs.uk/conditions-and-treatments/medicines-information/warfarin/), due to the high risk of bruising and bleeding, which can lead to DVTs and/or excessive bleeding (Great Ormond Street Hospital, 2016).
Sports was actually the first thing that popped into my mind and overwhelmed me with grief, when I first received my Antiphospholipid Syndrome diagnosis. I loved to play basketball and football, as well as rock-climbing. I did sports not so much for health reasons, but because I enjoyed them. I struggle to this day to exercise as I dislike solo sports, and do so out of necessity, rather than pleasure.
Read Related Posts:
- [Loss of Identity with Chronic Illness & The Plot Twist: Sharpened Self-Worth](https://achronicvoice.com/loss-of-identity-self-worth/)
- [Why Self-Acceptance is Important When You Have a Chronic Illness](https://achronicvoice.com/self-acceptance-chronic-illness/)
- [How to Use the 7 Dimensions of Wellness to Thrive with Chronic Pain](https://achronicvoice.com/dimensions-of-wellness/)
- [Man’s Search for Meaning by Viktor Frankl: 16 Takeaways with Chronic Illness](https://achronicvoice.com/mans-search-for-meaning-chronic-illness/)
- [Chronic Illness Quotes to Inspire, Motivate, Grieve, Hope & Laugh About](https://achronicvoice.com/chronic-illness-quotes/)
1. **‘Sticky Blood’** \- Antiphospholipid Syndrome is sometimes referred to as ‘[Sticky Blood Syndrome](https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/hughes-syndrome)’, due to the increased tendency for the body to form blood clots (Better Health Channel, n.d.). It’s pretty much an unofficial term and not technically correct, though it can be easier to explain what APS is about to others in layman terms!
Also Read: [Antiphospholipid Syndrome](#APS) | [Hughes’ Syndrome](#SectionH)
1. **Stillbirth** \- [Antiphospholipid antibodies can increase the risk of a stillbirth](https://journals.lww.com/greenjournal/abstract/2013/09000/antiphospholipid%5Fantibodies%5Fin%5Fstillbirth.22.aspx) by threefold to fivefold (Silver et al., 2013). **[Learn more about stillbirth and pregnancy in this post](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#pregnancy)**.
2. **Stop Bleed First Aid** \- Like any other chronically ill person, I have my own ‘mini pharmacy’ at home. As someone with an Antiphospholipid Syndrome diagnosis, my ‘pharmacy’ includes sprays and plasters that help to stop bleeding. Something like this is essential when you’re on anticoagulants, and especially when you’re travelling.
They come in various forms, such as plasters (for minor cuts), sprays, gels and powders. I personally prefer the sprays as they cover a wider surface area, and are quick and easy to use. Here are some you can get from Amazon:
Buy Stop Bleed Sprays:
- [Curad: QuickStop Bleeding Control Spray](https://www.amazon.com/dp/B01G45K54K?&linkCode=ll1&tag=achronicvoice-20&linkId=91fca6a74eeaf3dee2d04594f5916488&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [New-Skin: Liquid Bandage Spray](https://www.amazon.com/dp/B010OVC28W?th=1&linkCode=ll1&tag=achronicvoice-20&linkId=69c7846bd301524486708ad51059db3e&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
Buy Stop Bleed Powders:
- [BleedStop™ First Aid Powder (for bleeding wounds or nosebleeds)](https://www.amazon.com/dp/B09ZBK5RBP?th=1&linkCode=ll1&tag=achronicvoice-20&linkId=edc1edda78249a9200e3886fbbb02739&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Nampons: for Nosebleeds (nasal plugs with clotting agent)](https://www.amazon.com/dp/B08YSB2M34?th=1&linkCode=ll1&tag=achronicvoice-20&linkId=af0b9d1ac40dc073202bf9706dd712f6&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [WoundSeal Powder (suitable for pets, too)](https://www.amazon.com/dp/B00GC81R4W?&linkCode=ll1&tag=achronicvoice-20&linkId=04b59791343a80748397f97ab144800e&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [BleedCease: Stop Nasal Bleeds (natural based polymer, calcium alginate, derived from brown seaweed)](https://www.amazon.com/dp/B07TFBFFNN?&linkCode=ll1&tag=achronicvoice-20&linkId=c01b58289e1d7624e99836637731461e&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
Buy Stop Bleed Bandages / Plasters / Wound Kits:
- [Curad: Quickstop Flex-Fabric Bandages](https://www.amazon.com/dp/B01FY63WA4?th=1&linkCode=ll1&tag=achronicvoice-20&linkId=6dfc90cb90a98bec190ad8e424f4a0d4&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Emergency Wound Closures Band-Aid Laceration Repair Kit Without Stitches](https://www.amazon.com/dp/B09NTDTPC2?&linkCode=ll1&tag=achronicvoice-20&linkId=165851208d224a57e4c2d6fefceaa7e1&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
Buy Stop Bleed Gels:
- [Rapid-Seal: Wound Gel](https://www.amazon.com/dp/B08K1HFYQV?th=1&linkCode=ll1&tag=achronicvoice-20&linkId=6c5154eca9eb3716b81cd43f32103379&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
Also Read: [Blood Clots & Bleeding](#SectionB) | [Coagulation](#coagulation) | [Haemorrhage](#haemorrhage) | [Hospital Bag](#HospitalBag) | [Paper Cuts](#PaperCuts) | [Travel](#travel)
Read Related Posts:
- [Top Tips for Travelling with Chronic Illness & Disability (From a Girl Who Loves to Travel)](https://achronicvoice.com/top-tips-travelling-chronic-illness-disability/)
- [Wound Care & What to Wear After Knee Surgery](https://achronicvoice.com/wound-care-what-to-wear-after-knee-surgery/)
- [Tips & Tools to Help Regain Independence with a Disability or Chronic Illness](https://achronicvoice.com/independence-disability-chronic-illness/)
- [Useful Home Resources I Never Knew Existed (and Learned About from Other Chronic Illness Blogs)](https://achronicvoice.com/disability-home-resources/)
1. **Support Groups** \- Support groups can be a lifeline for chronically ill patients, regardless of what their diagnosis may be. For patients with an Antiphospholipid Syndrome diagnosis, it can feel empowering when you meet people who just ‘get’ you, and understand the struggles you face without the need to explain.
I have met a number of ‘spoonie’ friends through social media and my advocacy work, and frequently chat with them. Whilst not all of them live with Antiphospholipid Syndrome, the symptoms and struggles from our myriad chronic illnesses tend to overlap.
These are topics that the average healthy person simply won’t understand, such as chronic fatigue which can be more debilitating than chronic pain, the loss of self-identity, the sadness of being unable to work full-time, and the worries of the financial burden.
It’s important to find support groups or friends who share the same values as you however. (And IMHO, share the same type of humour!) There are also many ‘support groups’ that are more negative than positive, so you want to steer clear from those.
At the end of the day, you know what type of support works best for you, so trust your instincts. Some patients thrive from in-person support groups, whilst others might find this draining. Regardless, some form of emotional and moral support is key to thriving with any chronic illness.
If you are a chronic illness blogger, here is a support group that I’m an admin of, and which you are welcome to join: [Chronic Illness Bloggers](https://chronicillnessbloggers.com/). You can also connect with me on social media here, if you like!: [Facebook](https://www.facebook.com/achronicvoice), [Twitter/X](https://x.com/AChVoice), [Instagram](https://www.instagram.com/achronicvoice/), [Pinterest](https://www.pinterest.com/achronicvoice/), [BlueSky](https://bsky.app/profile/achronicvoice.com) and [SubStack](https://substack.com/@achronicvoice).
Read Related Posts:
- [Why ‘Easy’ Part-Time Jobs are Not That Easy for Those with Chronic Illness](https://achronicvoice.com/part-time-jobs-chronic-illness/)
- [Sometimes, Physical Pain Isn’t the Worst Part About Chronic Illness](https://achronicvoice.com/pain-chronic-illness/)
- [The Savagery of Panic Attacks & The Saving Grace of Internet Friends](https://achronicvoice.com/panic-attacks-internet-friends/)
- [7 Ways to Be a Better Friend to Someone with a Chronic Illness (and 3 Things You Should Never Do)](https://achronicvoice.com/better-friend-chronic-illness/)
- [Useful Things to Do While on Bed Rest After Surgery: Education, Advocacy & Volunteering](https://achronicvoice.com/useful-things-to-do-while-on-bed-rest-after-surgery-education-advocacy-volunteering-part-5-5/)
1. **Syphilis False Positive** \- The Wasserman test used in the past for detecting syphilis was dependent on an antibody called reagin, which reacts with cardiolipin. The [biological false positive test for syphilis](https://www.hopkinslupus.org/lupus-tests/antiphospholipid-antibodies/) was actually the first recognised test for antiphospholipid antibodies, and can occur in people with autoimmune diseases such as SLE and APS (Johns Hopkins Lupus Center, n.d.).
Also Read: [Anticardiolipin Antibodies](#anticardiolipin) | [Antiphospholipid Antibodies](#APLS) | [False Negative/Positive](#FalseNegPos) | [Lupus & Lupus Anticoagulant ](#SectionL)
1. **Systemic** \- According to García-Carrasco et al. (2013):
> “[Antiphospholipid syndrome (APS) is a systemic autoimmune disorder](https://www.ncbi.nlm.nih.gov/books/NBK459442/) defined by the persistent presence of antiphospholipid antibodies (aPL) in plasma of patients with vascular thrombosis and/or pregnancy morbidity.”
What this means is that Antiphospholipid Syndrome symptoms are not confined to one area, and can manifest anywhere within the body. APS is also often associated with autoimmune diseases such as Lupus. **[Learn more about the systemic implications of APS here](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#systemic)**.
Pin to Your Antiphospholipid Syndrome Signs & Symptoms Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## T is for Transient Ischaemic Attack (TIA) & Triple Positive
### Transient Ischaemic Attack (TIA)
Strokes and Transient Ischaemic Attacks (TIAs) are the most common neuropsychiatric manifestations of Antiphospholipid Syndrome. In fact, [more than 20% of strokes in patients younger than 45 years of age may be attributed to APS](https://journals.sagepub.com/doi/abs/10.1177/0961203318776110) (Ricarte et al., 2018). A [**TIA was also my first manifestation and experience with APS at 14**](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/), where exactly half of my body was numb.
[Symptoms of a TIA or stroke include](https://www.mayoclinic.org/diseases-conditions/transient-ischemic-attack/symptoms-causes/syc-20355679): weakness, paralysis in the face, arm or leg, vertigo, blurry vision or blindness, slurred speech and loss of balance or coordination (Mayo Clinic, 2024). It is critical to seek help immediately, as damage can accrue over time. The bottom line being – if you feel like something, anything’s off – please just go to the dreaded A&E / ER right away. It truly is better safe than sorry in this instance, as the effects on your body and health can be for life. [**Learn more about TIAs in this post**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#TIA).
Also Read: [Hospital Bag](#HospitalBag) | [Numbness](#numb) | [Strokes](#strokes) | [Young Adults](#SectionY)
### Triple Positive
To be a [‘triple positive’ APS patient](https://rmdopen.bmj.com/content/9/1/e002534) means that you have all three types of antiphospholipid antibodies (aPLs) present in your body, i.e. lupus anticoagulant (LA), anticardiolipin (aCL) and anti-β2GPI. Triple positive APS patients tend to be at a higher risk for thrombosis and obstetric complications, as well as CAPS (catastrophic APS) (Laurent et al., 2023).
Of note, the [lupus anticoagulant increases the tendency to clot significantly](https://ashpublications.org/blood/article/101/5/1827/106631/Lupus-anticoagulants-are-stronger-risk-factors-for), and studies have shown a correlation for thrombosis of up to 95% confidence interval (Galli et al., 2003).
Another thing to note is that triple positivity detection can vary, depending on the methods and type of assays used for measurement. The [two broad categories of assays used to diagnose APS](https://ashpublications.org/hematology/article/2014/1/321/20555/Laboratory-methods-to-detect-antiphospholipid) are LA essays and ELISAs (which measure anti-β2GPI and aCL) (Krilis & Giannakopoulos, 2014). In one study of 851 patients, [triple positivity detection was also found to be of statistical significance between BioPlex® 2200 and QUANTA Lite ELISA®](https://www.sciencedirect.com/science/article/pii/S1538783622023996#f0015) (Chayoua et al., 2018).
Having said that, it does not mean that single or double positive patients can be less cautious. I am double positive, but my rheumatologist says that I’ve had worst APS manifestations than someone who is triple positive, even.
Also Read: [Antiphospholipid Antibodies](#APLS) | [Anti-β2GPI](#AntiB2GPI) | [Anticardiolipin Antibodies](#anticardiolipin) | [Catastrophic APS](#CAPS) | [Lupus Anticoagulant](#LA) | [Non-Criteria/Seronegative APS](#NCAPS) | [Primary APS](#PAPS) | [Secondary APS](#SAPS)
### Other Terms for “T” and APS are:
1. **Tecarfarin** \- [Tecarfarin](https://www.cadrenal.com/tecarfarin/) is a novel vitamin K antagonist (VKA) that is being developed by Cardrenal Therapeutics, and is currently in phase III clinical trials (Cardrenal Therapeutics, n.d.). **[Learn more about tecarfarin and VKAs here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#tecarfarin)**.
Also Read: [Vitamin K](#SectionK) | [Warfarin](#warfarin)
1. **Testosterone Therapy** \- It is important to note that [testosterone therapy](https://www.mdpi.com/2077-0383/8/1/11) (TT) can cause the blood to clot, despite sufficient anticoagulation. It is important for patients to be screened for thrombophilia (such as antiphospholipid antibodies) prior to starting TT, as the risks may outweigh the benefits. In two studies of 88 such patients, venous thromboembolism was shown to peak at 3 months after starting TT (Glueck et al., 2019).
Also Read: [Antiphospholipid Antibodies](#APLS) | [Blood Clots & Bleeding](#SectionB) | [Coagulation](#coagulation) | [Men](#men) | [Women](#women)
1. **Traditional Chinese Medicine - [See Cupping, Traditional Chinese Medicine (TCM) & Chiropractor](#cupping).**
**Thrombin** \- [Thrombin](https://www.thieme-connect.com/products/ejournals/abstract/10.1160/TH10-11-0711) is the “central protease in the coagulation cascade” and also “plays a role in inflammation and cellular proliferation” (Siller-Matula et al., 2017). [Learn more about thrombin here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#thrombin).
2. **Thrombocytopenia** \- [Thrombocytopenia](https://www.nhlbi.nih.gov/health/thrombocytopenia) is a disorder where your platelet count is too low, and thus increases the risk for bleeding (NHLBI, 2022b). **[Learn more about thrombocytopenia here](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#thrombocytopenia)**.
Also Read: [Bleeding](#bleeding) | [Platelets](#platelets) | [Heparin-Induced Thrombocytopenia (HIT)](#HIT)
1. **Travel** \- DVTs and PEs are known colloquially as “[economy class syndrome](https://anatoljcardiol.com/article/AJC-82844)”, and can happen even in healthy people who remain immobile for long periods of time whilst on a flight or in a car. Dehydration and low oxygen levels due to the high altitude are contributing factors as well. There are perhaps up to 30,000 cases of such symptomatic passengers per year in the UK (Şabanoğlu, 2021).
[Other factors that increase the risk of PEs and DVTs](https://www.sciencedirect.com/science/article/pii/S001948321730144X) are: advanced age, obesity, pregnancy, estrogenic drugs, extreme cold, and being in high altitude areas for prolonged periods of time (Dutta et al., 2018). Thus, it is important for people with APS to pay attention to environmental factors whilst travelling, on top of the need to keep moving and stretching whilst in transit.
Travelling is one topic you can’t read much about in research papers, as this comes from patient experience. I share **[my personal best travel tips in this post](https://achronicvoice.com/top-tips-travelling-chronic-illness-disability/)**, and you can **[learn more about DVTs here](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#DVT)**.
Also Read: [Alcohol](#alcohol) | [Sports](#sports) | [‘Stop Bleed’ First Aid](#StopBleed)
Read Related Posts:
- [Travelling New Paths with Chronic Illnesses in My Pocket](https://achronicvoice.com/travelling-chronic-illness/)
- [Invisible in Florence: Life with Chronic Illness in Italy](https://achronicvoice.com/florence-italy-chronic-illness/)
- [What’s it Like to Live with Invisible Illness in Singapore? (7 Locals Share Their Thoughts)](https://achronicvoice.com/invisible-illness-singapore-locals/)
- [“It’s in My Blood”: Sarah Poitras – Round the World with a Lung Disease](https://achronicvoice.com/its-in-my-blood-sarah-poitras-lung-disease/)
- [Invisible Cities Linkup: Pros & Cons of Living with Chronic Illness in Your City](https://achronicvoice.com/invisible-cities-linkup/)
1. **Trial and Error** \- A lot of having an Antiphospholipid Syndrome diagnosis is figuring things out for yourself through trial and error. As a patient who has had APS for more than 20 years, I hope to reduce the amount of errors that newly diagnosed patients make, with this resource page. Many of these errors have led to detrimental lifelong consequences, some of which could have been avoided.
Having said that, there are still some things that you will need to be cautious about, and figure out on your own, such as diet and lifestyle. Remember that we are all different in terms of genetic make up, comorbidities, life duties and more. So do what’s best for yourself, and advocate for yourself as needed. **[Get tips on how to do personal research from credible sources here](https://achronicvoice.com/latest-research-on-antiphospholipid-syndrome/#personal)**.
Also Read: [Antiphospholipid Syndrome](#APS) | [Diet](#diet) | [Genes](#genes)
Read Related Posts:
- [The Annoying Thing About Living with Antiphospholipid Syndrome (My Personal Experiences)](https://achronicvoice.com/living-with-antiphospholipid-syndrome-personal-experiences/)
- [Loss of Identity with Chronic Illness & The Plot Twist: Sharpened Self-Worth](https://achronicvoice.com/loss-of-identity-self-worth/)
- [Life with Chronic Illness: Happiness & Pain Can Co-exist](https://achronicvoice.com/chronic-illness-happiness-pain/)
- [Why Self-Acceptance is Important When You Have a Chronic Illness](https://achronicvoice.com/self-acceptance-chronic-illness/)
- [How to Use the 7 Dimensions of Wellness to Thrive with Chronic Pain](https://achronicvoice.com/dimensions-of-wellness/)
Pin to Your Antiphospholipid Syndrome Diagnosis & Medical Information Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## U is for Ultrasound
### Diagnostic Ultrasound
A [diagnostic ultrasound](https://my.clevelandclinic.org/health/diagnostics/4995-ultrasound) is a non-invasive imaging test that uses high-frequency sound waves instead of radiation to ‘see’ inside the body. There are a few different types of diagnostic ultrasounds, such as abdominal, kidney, thyroid and transvaginal (Cleveland Clinic, 2022b).
Patients who are on blood thinning medications can bleed internally, such as during an ovarian cyst rupture. Ultrasounds are used to detect free fluid in such instances, which can indicate an abnormal buildup of fluid in a bodily cavity. An ultrasound is what I insist on at the A&E / ER should I suspect internal bleeding. You can [**read more about ovarian cyst ruptures here**](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#OCR).
Also Read: [Bleeding](#bleeding) | [Free Fluid](#SectionF)
### Doppler & Obstetric Ultrasound
A [doppler ultrasound](https://www.mayoclinic.org/doppler-ultrasound/expert-answers/faq-20058452) is able to measure blood flow in addition to images, by bouncing high-frequency sound waves off red blood cells. They are used to detect blood clots, heart valve defects, aneurysms and more (Mayo Clinic, 2023d).
A [history of thrombophlebitis and the second trimester doppler ultrasound](https://academic.oup.com/rheumatology/article-abstract/45/3/332/1788674?redirectedFrom=fulltext&login=false) is also the best predictor of late obstetric complications in APS and/or SLE patients (Le Thi Huong et al., 2006). [Obstetric ultrasound evaluations](https://www.cureus.com/articles/82244-obstetric-antiphospholipid-syndrome-from-the-perspective-of-a-rheumatologist#!/) are also used to detect abnormalities in foetal growth for patients with APS and/or SLE, such as in foetal growth restriction (IUGR). They are also used to evaluate amniotic fluid volume, foetal growth and morphology (Santacruz et al., 2022).
[**Read this post for more information on pregnancy and APS.**](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/#pregnancy)
Also Read: [MRI](#MRI) | [X-Rays](#SectionX)
Pin to Your Antiphospholipid Syndrome Diagnosis:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## V is for Vegetables & Vascular Manifestations
### Vegetables
Certain vegetables interact with vitamin K, and can become a tricky puzzle if you’re taking warfarin. If you’re newly diagnosed with Antiphospholipid Syndrome, the first rule to remember is that green, leafy vegetables contain the highest concentration of vitamin K.
Another thing to bear in mind with an Antiphospholipid Syndrome diagnosis is that unlike heart patients who are on warfarin, your blood has an increased tendency to clot in and of itself. This does not mean that you need to avoid vitamin K entirely, as it is important for nutritional needs. You just need to take extra precautions to consume a balanced diet and to keep track of your INR levels, together with your healthcare team. ([**Learn more about warfarin medication interactions here**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#WarfarinInteractions).)
[Vegetable oils are also an often forgotten factor](https://www.tandfonline.com/doi/abs/10.1517/14740338.5.3.433) when it comes to ‘vegetables’, such as soybean, canola, olive and sesame oils. These oils also contain vitamin K, and can interact with warfarin to the unwitting patient (Nutescu et al., 2006). As this topic is rather comprehensive, I will be writing a separate post all about it.
Also Read: [Broccoli](#broccoli) | [Vitamin D](#VitaminD) | [Diet](#diet) | [Fruits](#fruits) | [Green, Leafy Vegetables](#LeafyVeg) | [Herbs](#herbs) | [Vitamin K](#SectionK) | [Quinoa](#SectionQ) | [Saponins](#saponins) | [Supplements](#supplements)
### Vascular Manifestations
The [vascular system](https://www.urmc.rochester.edu/encyclopedia/content?contenttypeid=85&contentid=P08254) is also known as the circulatory system, and comprises arteries, veins and capillaries. Together, they circulate blood and lymphatic fluid throughout the body. Vascular diseases can be caused by blood clots, genetics, inflammation and more (University of Rochester Medical Center, n.d.-b). [**Learn more about vascular manifestations in APS patients here**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#vascular).
Also Read: [Blood Clots & Bleeding](#SectionB) | [Coagulation](#coagulation) | [Genes](#genes)
### Other Terms for “V” and APS are:
1. **Vaccinations** \- Studies have suggested that HPV (Human Papilloma Virus) infections are more prevalent in Lupus patients, and the HPV vaccine is recommended for patients up until 25 years of age. Extra precautions must be taken by APS patients however, due to the [risk of VTE (venous thromboembolism)](https://jcdr.net/article%5Ffulltext.asp?issn=0973-709x&year=2015&volume=9&issue=5&page=OE01&issn=0973-709x&id=5972) (Ranjan et al., 2015). It is a deep intramuscular injection, which can cause bruising and bleeding.
Also Read: [Injections](#injections) | [Sexual Intercourse](#sex) | [Surgery](#surgery) | [Young Adults](#SectionY)
1. **Vorapaxar (Zontivity)** \- [Vorapaxar is a novel thrombin antagonist](https://www.sciencedirect.com/science/article/abs/pii/S1043661817312550) that is approved for coronary artery disease. Specifically, it is a protease-activated receptor (PAR) antagonist, which is involved in platelet activation, and the thrombin cascade. One of the issues with Vorapaxar is its high risk of bleeding (Signorelli et al., 2018). **[Learn more about vorapaxar here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#vorapaxar)**.
2. **Vitamin K Antogonists (VKAs)** \- These are a class of medications for the prevention and treatment of thrombosis. You might be familiar with the most well-known of the lot by now – warfarin. **[I write about VKAs in greater detail here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#VKAs)**.
Also Read: [Coumarin](#coumarin) | [Vitamin K](#SectionK)
Pin to Your Antiphospholipid Syndrome Guide Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## W is for Warfarin & Women
### Warfarin
[Warfarin](https://www.ncbi.nlm.nih.gov/books/NBK441964/) is a vitamin K antagonist that inhibits multiple vitamin K dependent clotting factors, specifically factors II, VII, IX, and X, as well as the anticoagulant proteins C and S (Crader et al., 2023). In general, [patients with an Antiphospholipid Syndrome diagnosis are advised to use warfarin instead of DOACs](https://www.sciencedirect.com/science/article/abs/pii/S2387020623002802) (direct oral anticoagulants) for treatment, especially if they have a history of arterial thrombosis, or are triple and even double positive (Girón-Ortega & Girón-González, 2023).
[**Learn all about warfarin – from how it works to interactions with other medications – in this post**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#warfarin).
Also Read: [Blood Clots & Bleeding](#SectionB) | [Coumarin](#coumarin) | [Haemorrhage](#haemorrhage) | [INR](#INR) | [Vitamin K](#SectionK) | [Triple Positive](#TriplePos)
### Women
Antiphospholipid Syndrome is more commonly found in women than in men, with a ratio of about 3.5:1 (Kaul et al., 2023). [**I have dedicated an entire post to females and Antiphospholipid Syndrome here**](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/).
Pin to Your Antiphospholipid Syndrome Diagnosis Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## X is for X-Rays
Whilst x-rays are ***not*** used to diagnose APS, and [*they *cannot* show a pulmonary embolism*](https://www.mayoclinic.org/diseases-conditions/pulmonary-embolism/diagnosis-treatment/drc-20354653), they are still useful to rule out other possible conditions. Apart from detecting bone fractures and tumours, x-rays can also be used to detect blocked blood vessels. When used with radioactive contrast agents, x-rays can also reveal blood flow to the heart muscle, blood vessels and organs (Mayo Clinic, 2022).
[Avascular necrosis (AN) can occur in patients with APS and SLE](https://www.ingentaconnect.com/content/ben/crr/2010/00000006/00000001/art00006), especially those who are on steroid treatment, and/or consume alcohol excessively. Antiphospholipid antibodies and other factors may be possible contributors as well. AN patients can be asymptomatic, and x-rays don’t always show abnormalities until months after it has begun. MRIs are more useful in detecting such cases, as compared to x-rays, CT scans, and/or bone scans (Gómez-Puerta & Pons-Estel 2010).
[**Learn more about AN and other musculoskeletal and pulmonary manifestations in APS patients in this post**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/).
Also Read: [Antiphospholipid Antibodies](#APLS) | [Alcohol](#alcohol) | [Blood Clots & Bleeding](#SectionB) | [Coagulation](#coagulation) | [Haemorrhage](#haemorrhage) | [MRI](#MRI) | [Ultrasound](#SectionU)
### Angiography
An [angiogram](https://www.healthdirect.gov.au/angiogram) is an x-ray where a contrastive agent is injected, which helps to show the shape, structure and flow of blood vessels. It can be used to check for blockages and other issues within them (Healthdirect Australia, 2023). For example, a [coronary angiography may reveal blocked arteries or intracoronary organised clots](https://www.omjournal.org/CaseReports/FullText/200910/FT%5FA%20Rare%20Presentation%20of%20Primary%20AntiphospholipidSyndrome.html). Antiphospholipid antibodies (aPLs) can cause thrombosis in normal blood vessels, due to a number of factors (Prashanth et al., 2009).
A [cardiac catheterisation and angiogram](https://www.nhs.uk/conditions/coronary-angiography/) is an invasive procedure, and is used to visualise the arteries in the heart. The technique is known as arteriography. It can be used to help diagnose certain conditions such as after a heart attack or angina, or to plan surgical procedures (NHS, 2022b). It has also been noted that [patients with aPLs and cerebrovascular events](https://www.ajnr.org/content/19/4/611.short) seem to present arterial abnormalities differently as compared to the general population, when assessed via arteriography (Provenzale et al., 1998).
[**For more information about cerebrovascular and cardiological manifestations in APS, read this post**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/).
### Tomography / CT Scan
A CT scan is also known as a [computed tomography](https://www.nibib.nih.gov/science-education/science-topics/computed-tomography-ct). It uses a combination of x-rays and computer technology to generate cross-sectional images of the body. These images are more detailed than standard x-rays, and are used to diagnose tumours, blood clots, haemorrhages, and other injuries inside the body. A contrast agent may be used to help visualise soft tissues and other fine structures better (National Institute of Biomedical Imaging and Bioengineering \[NIBIB\], 2022).
Multislice computed tomography (MSCT) angiography is a noninvasive, and more advanced method. According to one study of 100 APS patients, it [proved to be the method of choice for monitoring blood vessel changes](https://link.springer.com/article/10.1007/s12026-016-8887-6). Their results revealed that lower extremity blood vessel lesions were more prevalent in APS patients (Saponjski et al., 2017).
### Other Terms for X & APS:
1. **Xarelto** \- This is the brand name of the DOAC, rivaroxaban. **[More information on DOACs, including Xarelto, can be found here](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/#DOACs)**.
Pin to Your Antiphospholipid Syndrome & Autoimmune Disease Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## Y is for Young Adults
### Strokes & Transient Ischaemic Attacks (TIAs)
Strokes and heart attacks are more commonly associated with the elderly, but it is important to be aware that young adults with Antiphospholipid Syndrome can also experience them. In fact, [about 10% – 15% of strokes happen to young adults](https://www.sciencedirect.com/science/article/pii/S0006497118628782) (Vaccarino et al., 2019).
[According to a systematic review by Sciascia et al. (2015)](https://ard.bmj.com/content/74/11/2028):
> “The overall aPL frequency was estimated as 17.4% (range 5%–56%) for any CVE \[cerebrovascular events\], 17.2% (range 2%–56%) for stroke and 11.7% (range 2%–45%) for transient ischaemic attack (TIA). The presence of aPL increased the risk for CVE by 5.48-fold (95% CI 4.42 to 6.79).”
[**My first manifestation of APS was a TIA at 14 years of age**](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/), and I’m lucky in a sense to get an Antiphospholipid Syndrome diagnosis shortly after. Many patients go undiagnosed or misdiagnosed for years, even decades. Meanwhile, their invisible illnesses cause pain and symptoms that are poorly managed.
Also Read: [Invisible Illness](#II) | [Strokes](#strokes) | [Support Groups](#SupportGroups) | [Transient Ischaemic Attack](#TIA)
Read Related Posts:
- [What’s It Like Going Back to School as an Adult with Disability and Chronic Illness](https://achronicvoice.com/going-back-to-school-as-an-adult-disability-chronic-illness/)
- [A Page From a Sick Girl’s Diary: Sometimes I Wish I was an Old Person](https://achronicvoice.com/page-sick-girls-diary-sometimes-wish-old-person/)
- [We Want to Have Fun Just Like You, But Here’s What it Takes](https://achronicvoice.com/we-want-have-fun-just-like-you-but-heres-what-takes/)
- [12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?)](https://achronicvoice.com/body-gone-rogue-invisible-illness/)
- [Would You Rather: Have an Invisible Illness or a Visible Disability?](https://achronicvoice.com/invisible-illness-disability/)
### Cerebral Venous Sinus Thrombosis
[Cerebral Venous Sinus Thrombosis](https://journals.sagepub.com/doi/full/10.1177/1076029621999104) (CVST) is a rare but severe cerebrovascular disease that is often overlooked at the outset. It accounts for about 0.5% – 1% of all strokes in the adult population, but 10% – 20% of strokes in young adults (Shen et al., 2021).
APS was found to be the underlying factor for CSVT in 6% – 17% of patients. Whilst the exact reason is yet unclear, studies have suggested enhanced production of antiphospholipid antibodies (aPLs) as a possible factor. [One study found that young adults were more prone to CSVT](https://journals.sagepub.com/doi/full/10.1177/1076029621999104), and were mainly female (Shen et al., 2021).
In a small study of 11 primary APS patients, they [concluded that CSVT may also occur in younger patients](https://synapse.koreamed.org/articles/1026296), with more extensive involvement of the venous system compared to other causes of venous thrombosis (Kim et al., 2000). [**Learn more about veins here**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#veins).
Also Read: [Antiphospholipid Antibodies](#APLS) | [Catastrophic APS](#CAPS) | [Men](#men) | [Primary APS](#PAPS) | [Secondary APS](#SAPS) | [Women](#women)
### Heart Attacks
Heart attacks are known medically as [myocardial infarctions](https://www.ncbi.nlm.nih.gov/books/NBK537076/) (MI), and occur when there is a decrease or complete stop of blood flow to the myocardium (the muscle layer of the heart) (Ojha & Dhamoon, 2023). An [acute myocardial infarction](https://www.msdmanuals.com/professional/cardiovascular-disorders/coronary-artery-disease/acute-myocardial-infarction-mi?ruleredirectid=749) (AMI) is when there is heart cell death during a heart attack (Sweis & Jivan, 2024).
It is important to note that [young adults with APS can also suffer from AMI](https://academic.oup.com/pmj/article-abstract/78/915/27/7039162?redirectedFrom=fulltext&login=false), due to antiphospholipid antibodies. They can also suffer from valvular abnormalities in addition to that (Osula et al., 2002).
[**Learn more about heart attacks and cardiovascular manifestations in APS patients here.**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/#CVD)
Pin to Your Antiphospholipid Syndrome & Chronic Illness Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## Z is for Zinc
To be honest, I had no idea about zinc and its interaction with phospholipids, until I had to go dig for medical terms starting with the infamous ‘Z’. [Zinc is a trace mineral that can be found in food sources](https://nutritionsource.hsph.harvard.edu/zinc/) such as: shellfish, beef, legumes, nuts, seeds and whole grains (Harvard T.H. Chan School of Public Health, 2023).
Zinc is also available in supplement form that you can purchase over-the-counter. Only small amounts are needed by the body; consuming too much of it can be toxic. The recommended daily allowance is 8 – 11mg, and [people in industrialised countries rarely have zinc deficiencies](https://www.mountsinai.org/health-library), unless they have malabsorption syndromes or are on a restricted diet (Mount Sinai, n.d.-b).
Yet, zinc occurs as constituents of more than 300 enzymes. It is involved in processes that are also altered by the action of antiphospholipid antibodies. A lack of zinc can indirectly result in inadequate blood flow, in addition to many other health issues. [According to Tubek et al. (2008)](https://link.springer.com/article/10.1007/s12011-007-8077-4):
> “In this regard, if antiphospholipid antibodies alter the structure and function of cell membranes of thrombocytes and endothelium then an effect on the above-mentioned phenomena could be expected. The clinical symptoms of these alterations include early atherosclerosis development, thrombosis, and pulmonary embolism.”
You can [**learn more about how Antiphospholipid Syndrome affects various organs and bodily systems here**](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/).
Also Read: [Antiphospholipid Antibodies](#APLS) | [Blood Clots & Bleeding](#SectionB) | [Calcium](#calcium) | [Vitamin D](#VitaminD) | [Diet](#diet) | [Green, Leafy Vegetables](#LeafyVeg) | [Vitamin K](#SectionK) | [Omega Oils](#OmegaOils) | [Phospholipids](#phospholipids) | [Saponins](#saponins) | [Supplements](#supplements)
Pin to Your Antiphospholipid Syndrome & Chronic Illness Guide Boards:
Jump to Section:
[A](#SectionA) [B](#SectionB) [C](#SectionC) [D](#SectionD) [E](#SectionE) [F](#SectionF) [G](#SectionG) [H](#SectionH) [I](#SectionI) [J](#SectionJ) [K](#SectionK) [L](#SectionL) [M](#SectionM) [N](#SectionN) [O](#SectionO) [P](#SectionP) [Q](#SectionQ) [R](#SectionR) [S](#SectionS) [T](#SectionT) [U](#SectionU) [V](#SectionV) [W](#SectionW) [X](#SectionX) [Y](#SectionY) [Z](#SectionZ)
## Conclusion to the Antiphospholipid Syndrome Diagnosis: A – Z Guide
It is my sincere hope that this resources page has been useful to you, especially if you’ve just received an Antiphospholipid Syndrome diagnosis. As a patient, I know just how scary it can be, and the feelings of both loss and feeling lost.
I hope that this resource page can be like a small flame amidst that terrifying fog, and I have faith that you will manage it to the best of your own abilities. Sending well wishes, and feel free to leave a comment should you have more questions, a story to share, or a correction to point out. I am not a doctor, afterall 😉 Thank you so much for reading until the very end!
If you liked this resource and would like to show your token of appreciation, you can do so with the button below. Thank you for your support!
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Read Related Posts in the Antiphospholipid Syndrome Diagnosis Series:
- [Latest Research on Antiphospholipid Syndrome (2024 Edition)](https://achronicvoice.com/latest-research-on-antiphospholipid-syndrome/)
- [Pregnancy, Miscarriage & Women’s Health in Antiphospholipid Syndrome](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/)
- [The Lowdown on Medications & Antiphospholipid Syndrome (Warfarin, Enoxaparin, DOACs, NSAIDs & More)](https://achronicvoice.com/medications-and-antiphospholipid-syndrome-warfarin-enoxaparin-doacs-nsaids/)
- [How Does Antiphospholipid Syndrome Affect The Body? (Beyond the Blood to Major Organs)](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body-blood-major-organs/)
- [The Annoying Thing About Living with Antiphospholipid Syndrome (My Personal Experiences)](https://achronicvoice.com/living-with-antiphospholipid-syndrome-personal-experiences/)
- [An Experience from Hell: Pulmonary Embolism, DVTs & Antiphospholipid Syndrome](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)
- [What it Feels Like to be Refused Treatment by a Hospital’s A&E / ER](https://achronicvoice.com/refused-treatment-hospital/)
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## Posts
### People Ask Me How to Live with Chronic Illness (My Personal Approaches)
URL: https://achronicvoice.com/how-to-live-with-chronic-illness/
Last updated: 2026-09-05T16:05:30.000Z
## How to Live with Chronic Illness? — A Question I Get Asked A Lot
I am frequently asked, “how do you do it?”, or “what keeps you going, despite chronic pain?”. In all honesty, there is nothing mysterious or inspiring in what I’m about to share in this post. Rather, it’s just a simple life philosophy, or a constant return to a single question — “what does life expect from me, in this very moment?”.
> *“It did not really matter what we expected from life, but rather what life expected from us.” (Frankl, 1946/2006)*
*Note: This post is written as part of the September 2026 linkup. The five writing prompts are: *Asking*, *Overthinking*, *Humbling*, *Valuing*, and *Reclaiming*. You're more than welcome to pick at least three prompts to write about in any style you like, and* [***join us here***](https://achronicvoice.com/september-writing-prompts-chronic-illness-disabilities-2026/)😊
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
Pin to Your Living with Chronic Illness Boards:
## That Rhetorical Question is Based on Viktor Frankl’s Framework on Logotherapy
According to the [Viktor Frankl Institute of Logotherapy](https://www.viktorfranklinstitute.org/about-logotherapy/):
> *“Viktor Frankl’s Logotherapy is both a life philosophy and treatment modality. As a philosophy it focuses on the meaning of human existence and on man’s search for such meaning. As a therapy it focuses on finding healing through finding meaning.”*
I will further explain what the rhetorical question, “what does life expect from me, in this very moment?”, means to me below — how it helps me to live with chronic illness, and navigate difficult days and unpredictabilities.
### Approaching Life from a Position of Humility
First, I believe that question — “what does life expect from me, in this very moment?” — is approached from a position of humility at its essence. Contrary to common belief, being humble does not equate to low self-worth, self-esteem, or a lack of confidence. In fact, [**I would rate my level of self-worth now to be higher**](https://achronicvoice.com/loss-of-identity-chronic-illness/)than it was 20 years ago; partly due to age, yes, but also because of the [**life lessons I’ve had to learn from being chronically ill.**](https://achronicvoice.com/interview-uninvisible-pod/)
In general, I’ve found overconfident people who lack humility to actually be wanting in self-worth, yet aren’t even aware of that fact themselves (or don’t want to admit to it). On the other hand, the humblest people I personally know have a very stable core of self-worth — external opinions do not destabilise what they already know to be their worth as a human being; [**they have nothing to prove**](https://achronicvoice.com/reminders-for-bad-days/), and no one they need to prove it to.
Here are some of my favourite quotes on humility which emphasise this point:
> *“Humble enough to know I can be replaced. Wise enough to know that there is nobody else like me.” — Unknown*
> *“Humility is not thinking less of yourself, it’s thinking of yourself less.” — Rick Warren*
#### I am Not that Special, Nor am I at the Centre of the Universe
I like to approach a problem or pain with thesobering and humblingthought, “I am not *that* special”, or “I’m not at the centre of the universe”. [**My mantra in life is simply to “get up and carry on”**](https://achronicvoice.com/suddenly-disabled/). Don’t get me wrong — I am not being cold or self-defeatist, and am aware that I will still be in great pain no matter what mindset I lean towards — be it positive or negative.
Such thoughts comfort me because they remind me that I’m not alone out there, and that [**life is bigger than my pain**](https://achronicvoice.com/keeping-up-despite-pain/). To know that [**there is still beauty in this world *despite* my pain**](https://achronicvoice.com/projchronicwisdom-beautiful-life-despite-pain/) helps me to [**endure it with more grace**](https://achronicvoice.com/chronically-ill-resilient/). Perhaps it is to not let myself become bitter, because chronic pain has a tendency to shrink a person’s entire world. Instead, it helps me to expand my world, and when the ‘world’ expands, there is space for beauty, endurance, and life.
> *“Life waiting for them to actualize values implies that the ‘I’ is not in the center, rather, values are in the center.” —* [*Viktor Frankl Institute of Logotherapy in Israel*](https://themeaningseeker.org/what-life-expects-of-you/)
### I Believe that I Have a Duty to Life
Sometimes, I paraphrase the question, “what does life expect from me, in this very moment?”, to “[**what does life demand of me right now**](https://achronicvoice.com/new-year-duties-life/)?”. This is not as drab or dreary as it sounds, because I believe that life always demands the best out of us.
[**It demands that we fulfil our potential as human beings**](https://achronicvoice.com/next-level-life/), it demands that we survive this tough moment to get there, and it reminds us that we have a role to play in the grand scheme of the universe. We may just be a speck, but a speck can still sparkle for ages.
Read Related Posts:
- [Why Humility is the Best Tool for Advocacy](https://achronicvoice.com/humility-advocacy/)
- [I Have No Purpose in Life, and Therein Lies My Life Purpose](https://achronicvoice.com/i-have-no-purpose-in-life/)
- [A Quarterly Reflection: 12 Important Life Lessons I’ve Learned](https://achronicvoice.com/quarterly-reflection-life-lessons-learned/)
- [Why Your Beauty Never Left You (Even with Chronic Illness)](https://achronicvoice.com/why-your-beauty-never-left-you/)
- [Flowers are the Most Beautiful When They're Just About to Die (and What That's Got to Do with Being a Spoonie)](https://achronicvoice.com/flowers-most-beautiful-die-spoonie/)
Pin to Your Humility, Values & Life Journey Boards:
## I Just Get Through the Pain Without Overthinking
In one of the roundups I did where [**40 people with chronic illness shared their best pain management tips**](https://achronicvoice.com/pain-management-tips-pain-flare/), Julie Holliday said something that I found and still find very insightful:
> *“Accept it, allow the emotions it triggers, but *be careful to not add any meaning to it about what it means for the future*. Then, to distract myself and make myself as comfortable as possible while I wait for the worst to pass.”*
We often tend to overthink when we’re in the throes of pain, and start to imagine doomsday scenarios for the future. Yet, we often fail to account for the fact that we are feeling at our worst in that particular moment. Thus, [**whatever negativity we are overloading our mind with**](https://achronicvoice.com/today-is-not-a-good-day/) during those moments isn’t the entire truth. When that period of agony passes, we tend to regain mental stamina and thus, [**feel more capable**](https://achronicvoice.com/capable-person-meaning/) and independent again. The mental is tied to the physical, and vice versa.
I would even go on to add that the higher the pain levels, the more you need to untangle yourself from the danger of giving the pain too much weight. What you need to do is to [**simply survive the episode**](https://achronicvoice.com/dealing-with-pain/). Come out on the other side, [**take a breather**](https://achronicvoice.com/just-breathing-enough-today-poem/), then look around you again to recalibrate.
### I Don’t Absorb Emotions Until I Need to
I guess ‘emotions’ and ‘thoughts’ are two sides of the same coin. I’m not sure if this is an entirely good thing, but I’ve learned not to absorb emotions until I need to. That is because I find emotional pain to be much [**worse than physical pain**](https://achronicvoice.com/worst-part-about-chronic-illness/), so a higher level of internal energy is consumed — something I'm already in short supply of. Any sort of stress, whether of a psychological or physical nature, always [**triggers a pain flare**](https://achronicvoice.com/pain-flare-triggers/).
### I Don’t Expect Others to Understand My Pain
I would also say that I’m a very compassionate person, but not empathetic. The reasoning behind it is that no one can truly understand another person’s pain, or put themselves in another person’s shoes — so why waste energy imagining it? But if I’m able to [**“show up” for a person**](https://achronicvoice.com/better-friend-chronic-illness/) — I will try my very best to do so.
As such, [**I don’t expect people to ‘get’ how much pain I’m in**](https://achronicvoice.com/we-shouldnt-expect-people-to-understand/), because such expectations bear the risk of disappointment. I explain my situation and need for accommodations, but also acknowledge that chronic pain is *impossible* for others to grasp.
Read Related Posts:
- [What Neverending Pain Reveals to You](https://achronicvoice.com/what-neverending-pain-reveals/)
- [Grieving the Life That I Will Never Have (Due to Chronic Illness & Disability)](https://achronicvoice.com/grieving-the-life-i-will-never-have-chronic-illness-disability/)
- [The Subtle Difference Between Saying “Think Positive” and “Stay Positive” to Someone with Chronic Pain](https://achronicvoice.com/difference-think-positive-stay-positive-chronic-pain/)
- [A Car Accident & A Song Gone Silent (How Life Lessons from Chronic Illness Tide Me Through)](https://achronicvoice.com/chronic-illness-life-lessons-accident-bird/)
- [Triggers Trigger Triggers (Re-stabilisation Procedure Encore)](https://achronicvoice.com/triggers-trigger-triggers-re-stabilisation/)
Pin to Your Chronic Pain & Mental Health Boards:
## I Think that Happiness is Overrated
Whilst I think that there is a kernel of truth to the phrase, “life is short, just be happy”, because many wise and kind old people have said it to me, I personally think that modern society places too much of a premium on the ‘achievement’ of happiness. [**As Thich Nhat Hanh states**](https://achronicvoice.com/lessons-on-mindfulness-thich-nhat-hanh/), “many people become unhappy in their search for happiness”.
I am not saying I want to remain miserable or that happiness is a bad thing. I am simply saying that happiness is not high on my list of life values or priorities. For some reason, this is confusing to many people, and they often try to ‘correct’ me by re-emphasising their phrase.
To me, who cares how long or short life is going to be? Happiness is not dependent on the length of one’s life. Besides, [**when you live with chronic pain — 24/7, 365 days a year**](https://achronicvoice.com/does-chronic-pain-go-away-last-pain-free-day/) — and especially when it flares up, happiness can be very abstract, and an elusive concept to chase. It is an unreliable and unstable element — a pop of glitter that explodes gloriously, then quickly fades away.
*P.S. When Ragnar said to his son, Björn, in the* [*TV series, “Vikings”*](https://www.imdb.com/title/tt2306299/)*, “who told you that you should be happy in life?”, I was like “yes!!!”* 😆 *And yes, I’m a huge fan of “Vikings”; I actually take inspiration from how Ragnar and Lagertha deal with hardships, and apply the mentalities in real life, too, even though it is from a fictional source. Whatever works, right?* 😛
### You Need to Survive Before You Can Thrive
I guess my mindset is quite base and evolutionary in this regard, because I am primarily focused on survival and self-preservation; chronic pain and a few [**near-death experiences**](https://achronicvoice.com/death-broken-heart/) have instilled that focus into me. My entire life thus far has been spent [**surviving and rebuilding**](https://achronicvoice.com/secret-of-change/), so I don’t know how to do otherwise.
However, regrowth and expansion can happen when the conditions become favourable — make that semi-favourable, because there is never a fully favourable time when you’re chronically ill. Exploring and gaining mastery in new life domains, such as fitness levels or education, bring me satisfaction or [**improve my quality of life in one way or another**](https://achronicvoice.com/dimensions-of-wellness-thrive-chronic-pain/). These matter just as much as being happy in and of itself.
Apart from measurable outcomes, regrowth and expansion can be of a mental or spiritual nature, too. To be able to find or make meaning out of a difficult situation brings about positive emotional states that outlast happiness as well, such as peace or hope. (Hope reminds me of the Sandman playing Satan's game in hell, by the way 😉)
"A Hope in Hell" fight scene | The Sandman
Read Related Posts:
- [How to be a Positive Thinker: Without the Unicorns & Rainbows](https://achronicvoice.com/positive-thinker-without-unicorns-rainbows/)
- [Life with Chronic Illness: Happiness and Pain Can Coexist](https://achronicvoice.com/chronic-illness-happiness-and-pain/)
- [365 Mindfulness Journaling Prompts for Self-Improvement](https://achronicvoice.com/365-mindfulness-journaling-prompts-for-self-improvement/)
- [How Many Times Can You Hit Rock Bottom with Chronic Illness?](https://achronicvoice.com/rock-bottom/)
- [How to Use the Tetris Effect to Invite Positivity Back into Your Life, Despite Chronic Illness](https://achronicvoice.com/tetris-effect-positivity-chronic-illness/)
## Seeking Out Contentment with Chronic Illness Instead
I think the small but big difference I have been trying to highlight is the meaning of ‘happiness’ versus ‘contentment’. In this [paper by McKenzie](https://onlinelibrary.wiley.com/doi/full/10.1111/jtsb.12098) (2015), they sum it up as, “in its simplest form, happiness consists of positive affect and contentment consists of positive reflection”. Did you find that “simplest”? Because I didn’t 😆
Joke aside, I prefer [this illustration on contentment](https://greatergood.berkeley.edu/article/item/what%5Fif%5Fyou%5Fpursued%5Fcontentment%5Frather%5Fthan%5Fhappiness) from Greater Good magazine instead: “‘chokkshay’ is a ‘spiritual word’ that means ‘**the knowledge of enough**’”. (I also googled the language — [Dzongkha in Bhutan](https://en.wikipedia.org/wiki/Dzongkha)). I also like the user, slayemin’s, take on the [difference between happiness and contentment](https://www.reddit.com/r/Stoicism/comments/mdcdue/what%5Fis%5Fthe%5Fdifference%5Fof%5Fbeing%5Fcontent%5Fand%5Fbeing/) in this Reddit thread:
> *“You don't need happiness to be content.*
> *Contentedness leads to happiness.*
> *Happiness is elusive, while contentedness can be created.”*
That is, I suppose, a 2026 way of paraphrasing what Frankl said as well, “happiness cannot be pursued; it must ensue.”
### How Contentment Looks Like in Daily Life
If ‘contentment’ is the umbrella term, then the little things that matter in life are the network of roots that your own life is built upon.
The small, familiar comforts matter a great deal when you’re in pain. This can be seen as coming home to your own bed, or having a nice hot cup of tea at the end of the day, if that’s your thing. There is no need for excitement, elation, or special celebrations to end a day well, although they’re nice once in a while.
I think that healthy people don’t appreciate just how much[**“boring” is actually a blessing in disguise**](https://achronicvoice.com/boredom-stimulating-cuddling-birds-august-2018/). In addition, [**when the good days do finally come around**](https://achronicvoice.com/bad-days-good-day-finally-came/) — as they always do — the taste is just that much sweeter.
### The Little Comforts, Joys & Routines in My Own Daily Life
A few [**everyday routines**](https://achronicvoice.com/a-day-in-the-life/) that help to stabilise me are:
- My morning coffee and medications
- A hot shower in the evening
- Sorting out my Buffer/social media schedules for the week (I know, nerdy)
- Playing ball with my dog, Talisker, and brushing his fur every evening
From this short list, you can see that they’re very simple things and nothing fancy. The little comforts of such moments are **enough** for me, and most importantly, they bring me peace. They signal to me that another day has passed without incident, and when you live with the [**unpredictability of chronic illness**](https://achronicvoice.com/chronic-illness-unpredictable-dont-fear-unknown/) — that is a win.
Read Related Posts:
- [To Live with Chronic Illness is to Learn to Live with Maybes](https://achronicvoice.com/chronic-illness-maybes/)
- [29 Best Tips on How to Cope with Isolation at Home (from People Who Have Done and Will Do This All Their Lives)](https://achronicvoice.com/cope-with-isolation/)
- [May 2018: In Memory of My Parrotlets & Designing My Days](https://achronicvoice.com/memory-parrotlets-designing-my-days-may-2018/)
- [#ProjChronicWisdom: Simple Pleasures I Can Enjoy Whilst Stuck in Bed with Pain](https://achronicvoice.com/projchronicwisdom-simple-pleasures-enjoy-pain/)
- [A Perfect Capture of Life with Chronic Illness](https://achronicvoice.com/capture-life-with-chronic-illness/)
Pin to Your Contentment, Happiness & Quality of Life Boards:
## I Believe That Love is an Endless Well
If there is one **value** or virtue in life that I hold dear, it is love. I have decided a long time ago that [**I will never close my heart up to people**](https://achronicvoice.com/kick-ass-with-kindness/), even if I keep getting hurt or rejected. This is because I believe that love is an endless well I can draw from deep within me; there is always more to give. In fact, I know that I still have *a lot more love* left to give.
I am not sure if my Chinese name has anything to do with it, because it means “excellent love” 😆 Perhaps names do have meaning after all, but I digress. This belief helps me to navigate [**a world that is often unkind, unforgiving, and unreasonable**](https://achronicvoice.com/everyday-scenarios-not-sure-polite/); it all comes back down to a willingness to put myself out there in the world regardless — you never know what or who will answer in return.
To clarify two things — I do not expect love in return; I find joy in the act of giving instead. I guess that is why the phrase “unconditional love” exists. Also, being loving does not mean being a pushover. In fact, I need to tone down on my aggression towards incompetent medical staff 😛
I guess what I basically mean to say is that to me, “to love” is never the wrong choice.
> *“I’ll never harden my heart, but I’ve toughened the muscles around it.” — Dolly Parton*
> *“Love is the only way to grasp another human being in the innermost core of his personality.” – Viktor Frankl*
Led Zeppelin — Whole Lotta Love \*Note: Contains some flashing lights.
## The Right Medications Matter When You Live with Chronic Illness
I just wanted to insert a short section here on the importance of having the right medication cocktail, too. When I was young and dumb and proud, [**I avoided painkillers just to prove how ‘strong’ I was**](https://achronicvoice.com/you-dont-have-to-be-strong/). I also didn’t seek out a psychiatrist, [**until I was begging for mental relief**](https://achronicvoice.com/depression-diagnosed-late/).
I learned over a decade that nobody really cares. Not in the sense that people do not support you, but rather, that you’re the only one who has to bear with the pain and consequences — be it mental or physical — and not someone else. So do what’s right by you.
Read Related Posts:
- [Why Painkillers are One of My Biggest Allies for a Decent Quality of Life](https://achronicvoice.com/painkillers-quality-of-life/)
- [A Pain Pill, a Caress, an Exhalation of Relief](https://achronicvoice.com/pain-pill-caress-relief/)
- [What's it Like to be on a High Dose of Steroids? (And the First Question You Will Definitely Ask)](https://achronicvoice.com/high-dose-steroids/)
- [The Lowdown on Medications and Antiphospholipid Syndrome (Warfarin, Enoxaparin, DOACs, NSAIDs & More)](https://achronicvoice.com/medications-and-antiphospholipid-syndrome/)
- [A Page From a Sick Girl's Diary: Sometimes I Wish I was an Old Person](https://achronicvoice.com/sick-girls-diary-wish-old-person/)
## How to Live with Chronic Illness is a Personal Construct You Need to Build for Yourself
In this post, I have shared my personal thoughts and approaches on how to live with chronic illness, and possibly even to **reclaim** some meaning despite it. Yet, I want to emphasise that “how to live a good life with chronic illness” is a [**personal construct**](https://achronicvoice.com/stories-we-tell-ourselves-prisons-freedom/) — it is truly what you make of it.
What works for me is *definitely* not going to work for you in its entirety, but I hope it helps to add some tools or perspectives to your own toolkit. It is crucial to first [**understand and acknowledge your worth**](https://achronicvoice.com/finding-self-behind-illness/), limitations, strengths, needs and such, in order to live with chronic illness fully and purposefully, **as is intended for you as an individual.**
Read Related Posts:
- [There's No One Way to Live Your Life](https://achronicvoice.com/no-one-way-live-your-life/)
- [Why Self-Acceptance is Important When You Have a Chronic Illness](https://achronicvoice.com/self-acceptance-chronic-illness/)
- [Call Me Sick Girl (Or How to Make Your Weakness Your Strength)](https://achronicvoice.com/sick-girl-make-weakness-strength/)
- [How to Have a Healthy Relationship with Your Body (Even with Chronic Illness)](https://achronicvoice.com/healthy-relationship-with-body-chronic-illness/)
- [The Value in Seeking Out Moments of Gratitude (and How to do it)](https://achronicvoice.com/value-gratitude/)
### Where to Start if You’re Unsure of Where to Even Begin
If you’re still unsure about how to live with chronic illness, a good starting point is often tied to life **values** that you hold dear, such as kindness, loyalty or honesty. Whilst [**chronic illness can create barriers**](https://achronicvoice.com/bucket-list-chronic-illness/) to traits that you value, such as independence or discipline, there may be ways to work around them with a bit of creativity, and a shift in perspective. When you [**release yourself from the trap of ‘perfect’**](https://achronicvoice.com/dont-compare-life-destination-special/), you will be astounded by how much further you can go.
Nobody gets everything they want in life. I repeat. *Nobody* gets everything they want in life. And when you live with chronic illness, ‘everything’ shrinks considerably more. That does not mean, however, that we cannot **reclaim** some meaning out of our experiences, in order to end our life journey on a note that we can be proud of. Many people who obtained what they thought they really wanted in life also got to their destination, only to realise that it wasn’t what they were actually seeking anyway.
You can read my post, “[**Man's Search for Meaning by Viktor Frankl: 16 Takeaways with Chronic Illness**](https://achronicvoice.com/mans-search-for-meaning-chronic-illness/)”, to gain more insight. [This post by Antoine Buteau](https://www.antoinebuteau.com/lessons-from-viktor-frankl/) also has a great infographic and quotes from Frankl that sum things up. Also, [**many of the quotes in this post can be found on this page here**](https://achronicvoice.com/chronic-illness-quotes/).
All roads truly lead to Rome, so pick the one you find most scenic — or enjoyable or meaningful or fun…... pick the one you prefer to tread upon 😉
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Read Related Posts:
- [Life is a Long Process of Becoming Into...](https://achronicvoice.com/life-is-a-long-process-of-becoming-into/)
- [4 Cool Truths My Partner Said (Unwittingly)](https://achronicvoice.com/cool-truths/)
- [7 Proven Strategies to Stay Resilient No Matter What Happens (from A to G)](https://achronicvoice.com/strategies-stay-resilient/)
- [Why Fear is Self Harm, and How to Get Back Up](https://achronicvoice.com/why-fear-is-self-harm/)
- [“It’s in My Blood”: Featuring People with Illnesses, Passions & Talents](https://achronicvoice.com/its-in-my-blood-people-illnesses-talents/)
Pin to Your Chronic Illness & Life Lesson Boards:
### September Writing Prompts for People with Chronic Illness & Disability (2026 Edition)
URL: https://achronicvoice.com/september-writing-prompts-chronic-illness-disabilities-2026/
Last updated: 2026-09-05T16:07:33.000Z
## Let's Get into the 2026 September Writing Prompts!
Welcome to the third instalment of the linkups since its relaunch! I am happy that there have been a few entries in the past two linkups, and that there were both 'old' and new faces. It has been refreshing to see how others interpreted the prompts, which were very different from my own. Come join us this month in the September writing prompts — I for one, would love to read what you have to say 🙂
*\*Disclaimer: This post/linkup is meant for educational purposes, and is based on my/our personal experiences as patient(s). *I/We are not doctors, and nothing in this post or its associated links should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post/linkup may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
Pin to Your Chronic Illness, Disability & Linkup Boards:
## What the 2026 September Writing Prompts are About, and How to Participate
The writing prompts are a monthly get-together for anyone with a chronic illness, mental illness or disability. An opportunity to share, to listen, and to learn from one another through shared writing prompts.
I also think it’s a great way to provide insight into life with chronic pain and disabilities, from many different points of view. You can choose to write about your latest experiences with chronic illness and/or disability, or even turn it into an [evergreen blog post](https://mailchimp.com/resources/evergreen-content/).
All you have to do is write a post using **at least three of the writing prompts** listed below, and publish it on your blog, or to a free writing platform such as [Medium](https://medium.com/) or [SubStack](https://substack.com/) (don't forget to set the post for public viewing!). Then click on the **blue ‘Add Link’ button** in the widget below to add your blog post to this page. Voilà, you’re now part of the linkup party!
## Simple Rules for the 2026 September Writing Prompts
- Only **submit one link** per website/blog.
- If you choose to participate, do **comment on at least two** other blog posts in this linkup by the end of the month. Return to check at a later date if there aren't enough entries yet. Helping to spread the word on your social media is always appreciated, but not required.
- Linkups start on the first of every month. There will be five different writing prompts. It will close at the end of each month before midnight. All timings listed are in [Singapore time](https://www.google.com.sg/search?q=singapore+time&oq=singapore+time&aqs=chrome..69i57j69i60l2j0l3.1041j0j1&sourceid=chrome&ie=UTF-8) (+8 GMT).
- Pick **at least three** of the writing prompts to write about. Five is best, of course!
- **Insert a link to this post** when you submit your blog entry for auto verification.
- Failure to follow these rules might get you blacklisted from future writing prompt linkups. Let's keep it fair for all 🙂
## September 2026 Awareness Dates
Here are a few awareness dates for September 2026\. Note that there may be variations, as different countries hold events or awareness dates on different dates. It is also not an exhaustive list, as there are many different days for just about everything. Feel free to use the prompts to advocate or talk more about these awareness dates if you like.
- [World Sexual Health Day](https://www.worldsexualhealth.net/world-sexual-health-day) (04 September)
- [World Suicide Prevention Day](https://www.iasp.info/wspd/) (10 September)
- [World Sepsis Day](https://www.safetyandquality.gov.au/news-and-media/events-and-awareness-days/world-sepsis-day) (13 September)
- [World Lymphoma Awareness Day](https://lymphomacoalition.org/world-lymphoma-awareness-day/) (15 September)
- [National HIV/AIDS and Aging Awareness Day](https://www.cdc.gov/hiv/awarenessdays/index.html) (18 September)
- [World Mitochondrial Disease Awareness Week](https://mitopatients.org/mito-week/) (14 – 20 September)
- [World Hydrocephalus Day](https://www.hydroassoc.org/ham2026/) (20 September)
- [National Non-speaking/Nonverbal Awareness Day](https://www.sendtutoring.co.uk/resources/blog/post/celebrating-non-verbal-awareness-day-every-voice-matters/) (30 September)
The following awareness campaigns span the entire month (a long list for September, as you can see!):
- [Alopecia Areata Awareness Month](https://www.naaf.org/events/alopecia-areata-awareness-month/)
- [Animal Pain Awareness Month](https://www.ivapm.org/animal-pain-awareness-month)
- [Blood Cancer Awareness Month](https://lymphoma.org/aboutus/bcam/)
- [Charcot-Marie-Tooth (CMT) Awareness Month](https://cmtrf.org/cmt-action-month/)
- [Childhood Cancer Awareness Month](https://childhoodcancer.asn.au/latest/2025/10/ccam2026/)
- [Dystonia Awareness Month](https://dystonia-foundation.org/summer-2026-dystonia-dialogue-available-online/)
- [Gynaecologic Cancer Awareness Month](https://www.aacr.org/patients-caregivers/awareness-months/gynecologic-cancer-awareness-month/)
- [Immune Thrombocytopenia Awareness Month](https://pdsa.org/contribute/raise-awareness-for-itp/itp-awareness-month)
- [Leukemia and Lymphoma Awareness Month](https://www.aacr.org/patients-caregivers/awareness-months/leukemia-and-lymphoma-awareness-month/)
- [National Atrial Fibrillation Awareness Month](https://www.heart.org/en/professional/quality-improvement/get-with-the-guidelines/get-with-the-guidelines-afib/afib-awareness-month)
- [National Pain Awareness Month](https://www.iasp-pain.org/advocacy/pain-awareness-month/)
- [National Recovery Month](https://www.samhsa.gov/about/digital-toolkits/recovery-month)
- [National Service Dog Month](https://canine.org/service-dogs/service-dog-month/)
- [National Sickle Cell Awareness Month](https://sicklecelldisease.org/national-sickle-cell-awareness-month/)
- [National Vascular Disease Awareness Month](https://veininstitute.com/national-vascular-disease-awareness-month/)
- [PCOS Awareness Month](https://www.congress.gov/bill/119th-congress/house-resolution/175/text) (now renamed to "[Polyendocrine Metabolic Ovarian Syndrome](https://swhr.org/health%5Ffocus%5Farea/polycystic-ovary-syndrome/)" (PMOS))
- [Prostate Cancer Awareness Month](https://www.pcf.org/pcam/toolkit/)
- [Urology Awareness Month](https://www.theurologyfoundation.org/impact-achievements/campaigns/urology-awareness-month/)
- [World Alzheimer's Month](https://www.alzint.org/get-involved/world-alzheimers-month/)
- [World Sexual and Reproductive Health Month](https://www.who.int/news-room/events/detail/2026/09/01/default-calendar/world-sexual-and-reproductive-health-month-2026)
## Presenting the 2026 September Writing Prompts 🎉
### 1\. Asking
Have you had to [**ask for more help**](https://achronicvoice.com/asking-for-help-life-skill/) than usual of late due to chronic pain, chronic fatigue or other disabilities? Or perhaps others have been asking you for help instead (or asking too many questions...). Perhaps you need to ask your doctor about a certain finding. You could also be [**asking for accommodations in school**](https://achronicvoice.com/going-back-to-school-as-an-adult-disability-chronic-illness/), asking for permission to do something, enquiring about project details, or seeking answers to a question be it from the community, AI, a mentor, or even yourself. You might also have been trying to ask for help to no avail. This prompt is quite open to interpretation, I think 🙂
Read Related Posts:
- [Is Seeking Help for Your Mental Health Worth It?](https://achronicvoice.com/mental-health-worth-it/)
- [MediSearch Review: A Medical AI Search Engine for Patients, Clinicians & Medical Writers](https://achronicvoice.com/medisearch-review-medical-ai-search-engine/)
- [Tips & Tools to Help Regain Independence with a Disability or Chronic Illness](https://achronicvoice.com/regain-independence-disability-chronic-illness/)
- [Why I Need to See More Than 10 Different Types of Doctors Regularly](https://achronicvoice.com/why-need-see-different-types-of-doctors/)
- [What's it Like to be on a High Dose of Steroids? (And the First Question You Will Definitely Ask)](https://achronicvoice.com/high-dose-steroids/)
### 2\. Overthinking
When you live with [**invisible illness**](https://achronicvoice.com/visible-evidence-invisible-illness/), it can be easy to fall into the trap of overthinking. This can be especially true if the [**symptoms are seemingly mysterious**](https://achronicvoice.com/mistook-dengue-fever-lupus-flare/), or repeatedly refuted. It can also be [**easy to overthink when you're in the throes of a severe pain flare**](https://achronicvoice.com/today-is-not-a-good-day/), or before or after a surgery. During such moments, you might feel like you're a burden to others, [**engage in negative self-talk**](https://achronicvoice.com/stories-we-tell-ourselves-prisons-freedom/), or reinforce defeating thoughts. The [**mind and body are connected**](https://achronicvoice.com/dimensions-of-wellness-thrive-chronic-pain/), after all. What are your strategies to deal with such rumination?
You may also be experiencing a high level of [**stress from work**](https://achronicvoice.com/chronic-stress-silent-assassin/), relationship, family, or some other issue. This often leads to anxiety and/or insomnia, as your mind plays the problem on repeat.
Read Related Posts:
- [Chronic Illness is Unpredictable, but You Don't Always Have to Fear the Unknown](https://achronicvoice.com/chronic-illness-unpredictable-dont-fear-unknown/)
- [Why it Feels Like Suicide is an Option When You Live with Chronic Illness or Disability](https://achronicvoice.com/suicide-chronic-illness/)
- [The Subtle Difference Between Saying “Think Positive” and “Stay Positive” to Someone with Chronic Pain](https://achronicvoice.com/difference-think-positive-stay-positive-chronic-pain/)
- [To Live with Chronic Illness is to Learn to Live with Maybes](https://achronicvoice.com/chronic-illness-maybes/)
- [September 2017: Resisting the Urge to Stress Myself Out Unnecessarily & Supporting the Supporters](https://achronicvoice.com/resisting-stress-supporting-supporters-september-2017/)
### 3\. Humbling
Modern society tends to be ego-focused and productivity driven, where a lot of one's identity and self-esteem are tied to their career, possessions, and such. Chronic illness and/or disability can be a humbling experience, because [**you realise just how fragile human beings are**](https://achronicvoice.com/what-neverending-pain-reveals/), and [**how life can change so quickly**](https://achronicvoice.com/suddenly-disabled/). You could also be experiencing other humbling moments that are not health-related.
Having said that, the word 'humbling' has a lot of positive connotations too; for example, experiencing the grandness of nature could leave you in awe and humbled. Or you could feel humbled by other nice human beings who go out of their way to make the lives of others better, when they really do not need to do so (R.I.P. Dolly Parton 😔)
Read Related Posts:
- [Are You a Capable Person? What Does That Even Mean?](https://achronicvoice.com/capable-person-meaning/)
- [Why Humility is the Best Tool for Advocacy](https://achronicvoice.com/humility-advocacy/)
- [March 2019: Epic Fail and Redefining Success](https://achronicvoice.com/epic-fail-redefining-success-march-2019/)
- [Kick Ass With Kindness and a Sweet Cherry on Top](https://achronicvoice.com/kick-ass-with-kindness/)
- [April 2018: Marvelling at the Miracle of Life & Splurging for My Birthday](https://achronicvoice.com/marvelling-miracle-of-life-splurging-birthday-april-2018/)
### 4\. Valuing
Apart from the association with financial assessments, "valuing" could also be related to appreciation and gratitude for certain people, circumstances, moments, systems, and more. Alternatively, feel free to use this prompt to share more about values you hold dear, and [**how they help you thrive despite chronic illness**](https://achronicvoice.com/value-gratitude/) or disability.
Read Related Posts:
- [Man's Search for Meaning by Viktor Frankl: 16 Takeaways with Chronic Illness](https://achronicvoice.com/mans-search-for-meaning-chronic-illness/)
- [I Have No Purpose in Life, and Therein Lies My Life Purpose](https://achronicvoice.com/i-have-no-purpose-in-life/)
- [10 Very Normal Things I am Grateful I Can Do](https://achronicvoice.com/normal-things-grateful-i-can-do/)
- [Timeless Duties Toward Life Every New Year](https://achronicvoice.com/new-year-duties-life/)
- [Why Self-Acceptance is Important When You Have a Chronic Illness](https://achronicvoice.com/self-acceptance-chronic-illness/)
### 5\. Reclaiming
You could be working towards [**reclaiming a certain aspect of your sense of self or identity**](https://achronicvoice.com/loss-of-identity-chronic-illness/), such as self-esteem or self-worth, self-confidence, or character trait. Or you could be [**attempting to reclaim a state of health**](https://achronicvoice.com/discovering-gut-health-old-friendships-november-2017/) and well-being. You could also be reclaiming a physical possession, [**reclaiming certain boundaries**](https://achronicvoice.com/healthy-boundaries-relationships-chronic-illness/), rights, and more. (I don't think any of us here have the power or resources to reclaim any land, but if you do — it would be very interesting to hear about it 😆)
Read Related Posts:
- [How to Have a Healthy Relationship with Your Body (Even with Chronic Illness)](https://achronicvoice.com/healthy-relationship-with-body-chronic-illness/)
- [Life with Chronic Illness: Happiness and Pain Can Coexist](https://achronicvoice.com/chronic-illness-happiness-and-pain/)
- [February 2018: Adapting to the Ebb & Flow of Chronic Pain and Depression](https://achronicvoice.com/adapting-ebb-flow-chronic-pain-depression-february-2018/)
- [May 2019: Investigating Chronic Pain Levels Post-Dengue Fever](https://achronicvoice.com/may-2019-investigating-chronic-pain-post-dengue-fever/)
- [Finding Your Self Behind the Illness (Your Story Isn't Over Yet)](https://achronicvoice.com/finding-self-behind-illness/)
## Join Us in the 2026 September Writing Prompts Here
Do you have thoughts to any of the writing prompts above? I truly hope to hear from you, and am eager to read what you have to say!
You can [**read** **past linkup entries here**](https://achronicvoice.com/diary-entries/) for inspiration or ideas on how or what to write about. Feel free to write in whatever style or form suits you, however. These writing prompts are meant to be a relaxing and cathartic community activity, after all. Happy writing and sharing!
You are invited to the **Inlinkz** link party!
[Click here to enter](https://fresh.inlinkz.com/p/d48fd8e85e7c456ab0b3821a5a8c203d)
[Direct Link to Linkup (if widget isn't working)](https://fresh.inlinkz.com/party/d48fd8e85e7c456ab0b3821a5a8c203d)
Pin to Your Chronic Illness Community & Writing Boards:
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### Does Chronic Pain Go Away? (11 People Share About Their Last Pain-free Day)
URL: https://achronicvoice.com/does-chronic-pain-go-away-last-pain-free-day/
Last updated: 2026-08-12T14:18:30.000Z
## Does Chronic Pain Go Away, or is It Here to Stay?
I have never been asked by a healthy person if I’ve ever experienced a pain-free day, most likely because [**the idea is** **incomprehensible to them**](https://achronicvoice.com/we-shouldnt-expect-people-to-understand/). Yet, if you have lived with chronic illness for some time, then you know the answer to the question, “does chronic pain go away?”.
The answer is a hard “no”.
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
Pin to Your Chronic Pain & Community Roundup Boards:
## What is It Like to Experience Pain on a Daily Basis?
The irony is that people who live with chronic pain have no idea themselves as to what the following day will be like, so they can’t quite tell you with precision. Just like anyone else, they may have a to-do list, jobs to complete, errands to run, and people to love, but a pain flare has a way of forcing everything else to be downgraded to a non-priority status.
The anticipation of pain can be even more exhausting than the experience of pain itself at times, because [**unpredictability messes with your psyche**](https://achronicvoice.com/chronic-illness-unpredictable-dont-fear-unknown/) and physiology. You are constantly bracing yourself for a potential attack, and running scenarios in your head of how you'd react [**should a pain flare truly strike**](https://achronicvoice.com/pain-management-tips-pain-flare/). Anyone who has suffered a massive flare-up of their chronic illness before is [always left a little traumatised](https://www.sciencedirect.com/science/article/pii/S1526590021002297) (Gasperi et al., 2021).
Read Related Posts:
- [Best Tips for Preventing a Pain Flare (from 40 People with Chronic Illness)](https://achronicvoice.com/prevent-pain-flare/)
- [Men with Fibromyalgia & the Unique Challenges They Face](https://achronicvoice.com/men-with-fibromyalgia-unique-challenges/)
- [Clinical Depression: Diagnosed 10 Years Late](https://achronicvoice.com/depression-diagnosed-late/)
- [“But That’s Normal for Me” (Why I Mistook Dengue Fever for a Lupus Flare)](https://achronicvoice.com/mistook-dengue-fever-lupus-flare/)
- [My Personal Experiences with Epiphrenic Esophageal Diverticulum (Plus Tips to Help Cope)](https://achronicvoice.com/epiphrenic-esophageal-diverticulum-personal-experiences-tips/)
## The Incomprehensibility & Dilution of “Chronic” in “Chronic Pain”
Most people have heard of the word ‘chronic’, and from what I understand, it’s a pretty common term in Gen-Z lingo as well. I actually first heard the term “[chronically online](https://www.vice.com/en/article/were-all-chronically-online-now/)” when [**I returned to school**](https://achronicvoice.com/going-back-to-school-as-an-adult-disability-chronic-illness/), and started hanging out with people half my age. In brief, the term refers to a person being so entrenched in social media or online culture, that it starts to affect their way of thinking and behaving. In that sense, I feel like the word “chronic” in “chronic pain” or “chronic illness” has become a little diluted. Not only is it associated with something bad, but it also implies an alterable predicament.
## The Solidarity Found in the Chronic Pain Community
Whilst every person who lives with chronic illness experiences pain differently, we all know just how bad chronic pain can be. There is solidarity in that knowledge; I often speak with [**my chronically ill friends online**](https://www.achronicvoice.com/2020/10/21/panic-attacks-internet-friends/) who live with very different diseases than my own, yet we have empathy for one another because we are actually able to comprehend what it means to live with [**unbearable pain**](https://achronicvoice.com/chronic-pain-bearable-not/) — the sort that is indescribable with words.
### An Attempt to Illustrate What Chronic Pain is Like
Metaphors are a wonderful aid for imagination, which is quite necessary if you are a healthy person who’s trying to understand what chronic pain is like. Apart from metaphors, actual lived experiences and stories may strike a chord — which emphasises the [**importance of sharing your own experiences if you live with chronic pain**](https://achronicvoice.com/humility-advocacy/). Every voice counts, and helps to paint a clearer picture.
In the roundup below, 11 chronically ill people share insights into the last pain-free day they had. Combined, I hope that they help to raise awareness on just how ‘chronic’ chronic pain truly is. Should you have more questions, feel free to ask openly in the comments section at the end of the post — I promise to answer as best as I can, as long as they are constructive (and others in the chronic illness community may chime in as well!).
Read Related Posts:
- [Useful Things to Do While on Bed Rest After Surgery: Education, Advocacy & Volunteering](https://achronicvoice.com/useful-things-to-do-while-on-bed-rest/)
- [Call Me Sick Girl (Or How to Make Your Weakness Your Strength)](https://achronicvoice.com/sick-girl-make-weakness-strength/)
- [An Experience from Hell: Pulmonary Embolism, DVTs & Antiphospholipid Syndrome](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)
- [The Annoying Thing About Living with Antiphospholipid Syndrome (My Personal Experiences)](https://achronicvoice.com/living-with-antiphospholipid-syndrome/)
- [How Many Times Can You Hit Rock Bottom with Chronic Illness?](https://achronicvoice.com/rock-bottom/)
Pin to Your Chronic Pain & Disability Boards:
## Does Chronic Pain Go Away? — 11 People Share Their Thoughts About Their Last Pain-free Day
### 1\. Eric
**Do You Remember When Your Last Pain-free Day was?**
Beginning of December, 2021.
**What Do You Remember About It?**
I didn't think about pain.
**Do You Think There was a Reason That You Had That Pain-Free Day?**
Before my conditions started showing symptoms.
**What's Your Baseline Level of Pain on a Daily Basis?**
6.
---
### 2\. Kate
[ ](https://katethealmostgreat.com/) [ ](https://www.facebook.com/katethealmostgreat) [ ](https://www.instagram.com/katethealmostgreat/) [ ](https://bsky.app/profile/katethealmostgreat.bsky.social)
**Do You Remember When Your Last Pain-free Day was?**
No.
**What's Your Baseline Level of Pain on a Daily Basis?**
I start the day at a 4, and I generally spend most of the day at a 6.
---
### 3\. April Smith
[ ](https://www.thethrivingspoonie.com/) [ ](https://bsky.app/profile/thethrivingspoonie.com)
**Do You Remember When Your Last Pain-free Day was?**
Not really, it was so long ago and they are so rare!
**What Do You Remember About It?**
I remember being happy to be able to do the simple things without pain for a change: walking my dog, showering, chores. I also remember feeling like I was waiting for the other shoe to drop - that the pain would come back any minute, so I felt like I couldn't really enjoy being pain-free.
**Do You Think There was a Reason That You Had That Pain-Free Day?**
I'm not sure of this exact day, so it's hard to say. But generally, [**my symptoms are affected by the weather and stress**](https://achronicvoice.com/pain-flare-triggers/), so I'd say that these two things being low-impact that day probably helped me feel better.
**What's Your Baseline Level of Pain on a Daily Basis?**
Somewhere between a 2-4\. This means that the pain may just seem like background noise, and I can ignore it sometimes, or it's more front-of-mind but I can still function mostly normally.
---
### 4\. Rhiann
[ ](https://www.facebook.com/MyBrainLesionAndMe) [ ](https://www.instagram.com/serenebutterfly) [ ](https://x.com/serenebutterfly) [ ](https://bsky.app/profile/serenebutterfly.bsky.social) [ ](https://www.pinterest.com/serenebutterfly/)
**Do You Remember When Your Last Pain-free Day was?**
This is such a thought-provoking question, for me I cannot remember when that would have even been. In one of my older blog posts, I wrote “Not being in pain seems so far removed from my reality that it feels like it only exists in fairy tales” and it’s true because every day for me pain is there. Some days are better than others but pain is always there.
**What's Your Baseline Level of Pain on a Daily Basis?**
I would say my pain is usually between 6 and 7\. On my worst days it is around an 8\. There have been days when it’s been a solid 10 and those are the days when I’m physically sick with the pain.
---
### 5\. seeking serenity and harmony
[ ](https://seekingserenityandharmony.com/) [ ](https://www.facebook.com/groups/serenityandharmonyhub) [ ](https://www.instagram.com/seekingserenityandharmony/)
**Do You Remember When Your Last Pain-free Day was?**
No.
**What Do You Remember About It?**
Can't remember when the last pain free day was.
**Do You Think There was a Reason That You Had That Pain-Free Day?**
If there was a day it would be a combo of meds/weather and balance of activity (not using more spoons than I have).
**What's Your Baseline Level of Pain on a Daily Basis?**
4.
---
### 6\. mohikan22
**Do You Remember When Your Last Pain-free Day was?**
To be honest I don't. I remember I had one that's about it.
**What Do You Remember About It?**
I remember being able to [**walk around with the grandchildren**](https://achronicvoice.com/carole-griffitts-chronically-ill-grandmother-modern/) and take a photoshoot that day.
**Do You Think There was a Reason That You Had That Pain-Free Day?**
Nothing had changed medication wise, possibly the weather as it was a calm average day. Not hot, not cold, not raining.
**What's Your Baseline Level of Pain on a Daily Basis?**
7/10.
---
### 7\. Beverley Butterfly
[ ](https://www.bloomingmindfulness.co.uk/) [ ](https://www.instagram.com/beverleybutterflyxx/) [ ](https://uk.pinterest.com/BloomingMindfulness/)
**Do You Remember When Your Last Pain-free Day was?**
Not pain free but I have had days where it is a lot less or almost nothing.
**What Do You Remember About It?**
That I could walk without my aid much easier, and I could think clearer.
**Do You Think There was a Reason That You Had That Pain-Free Day?**
It was a warm, not hot, and dry day.
**What's Your Baseline Level of Pain on a Daily Basis?**
Daily out of ten, I am usually around a three or four.
---
### 8\. mtm
**Do You Remember When Your Last Pain-free Day was?**
2 months ago.
**What Do You Remember About It?**
I was confused, then relieved, then concerned, and cycled through that for the rest of the day. Nothing was different, my meds hadn't changed, and my activity level is consistent every day, so it was very, very bizarre. I remember [**sleeping better than I had in years**](https://achronicvoice.com/floatation-therapy-chronic-pain/) that day.
**Do You Think There was a Reason That You Had That Pain-Free Day?**
No idea why.
**What's Your Baseline Level of Pain on a Daily Basis?**
On the 10 scale, it starts at a 5/6 and goes up from there. Usually sits at a high 7 [**by the time I get home from work**](https://achronicvoice.com/part-time-jobs-not-easy-chronic-illness/). If I've been traveling it sits at a high 7 most of the day.
---
### 9\. LaffingKat
[ ](https://bsky.app/profile/laffingkat.bsky.social)
**Do You Remember When Your Last Pain-free Day was?**
No.
**What Do You Remember About It?**
Nothing. Since I have had chronic pain for decades, I don't remember what it was like to be pain-free, although I know I [**had more energy and more freedom**](https://achronicvoice.com/want-to-have-fun-chronic-illness/) in what I could do.
**What's Your Baseline Level of Pain on a Daily Basis?**
Usually a 3 or 4 out of 10 on a good day.
---
### 10\. MrsBot
[ ](https://mrsbot.substack.com/)
**Do You Remember When Your Last Pain-free Day was?**
Jan 2023 (before diagnosis).
**What Do You Remember About It?**
I was able to do a Peloton workout and activities with my kids easily.
**Do You Think There was a Reason That You Had That Pain-Free Day?**
It was the day before I woke up with severe joint swelling and pain.
**What's Your Baseline Level of Pain on a Daily Basis?**
5 (now that I've found a [**biologic**](https://achronicvoice.com/anaphylaxis-rituximab/) that helps).
---
### 11\. Sheryl Chan
[ ](https://www.facebook.com/achronicvoice) [ ](https://www.instagram.com/achronicvoice/) [ ](https://x.com/AChVoice) [ ](https://bsky.app/profile/achronicvoice.com) [ ](https://www.pinterest.com/achronicvoice/blog-posts-on-a-chronic-voice/) [ ](https://www.youtube.com/@sicklessons) [ ](https://www.linkedin.com/in/sherylchan/)
**Do You Remember When Your Last Pain-free Day was?**
Yes; I think I remember quite precisely, because it was an anomaly. I was staying in Berlin for 3 months with my ex, [**back in the beginning of 2020**](https://achronicvoice.com/hello-2020-bubble-glitter-dont-pop/).
**What Do You Remember About It?**
We actually had had a night out at his friend’s place, playing board games, and having home made pies and wine (it was also [**where I tested the Pure Wine wands**](https://achronicvoice.com/drink-pure-wine-review/)!). So, I had expected to pay for that in terms of a pain flare the following day. Instead, I had a pain-free day, which was most quizzical because not only did that not happen, but my daily pain levels even got negated.
**Do You Think There was a Reason That You Had That Pain-Free Day?**
Perhaps a combination of laughter, feel-good hormones, and the [**cold winter air**](https://achronicvoice.com/winter-advocacy/) which was rare for me to experience. If there was a cause, I don’t think it was one, but multiple contributors.
**What's Your Baseline Level of Pain on a Daily Basis?**
It swings quite wildly for me — from two to seven. More than chronic pain itself, there is chronic fatigue and brain fog to contend with, which I [**actually find worse than the pain itself**](https://achronicvoice.com/worst-part-about-chronic-illness/), as there’s nothing you can do about those except to let time do its thing.
---
## In Conclusion — A Pain-free Day is Quite Abstract to Those with Chronic Illness
As you can see, many of the participants in this mini survey do not remember what it’s like to live with zero pain. It’s an incomprehensible concept in our world. There is *at least* one tiny body part that’s hurting at the bare minimum. Weather seems to play a huge role as well, no matter what the research says (or has yet to discover).
### Our Lives are Still Worth Something, Even if Chronic Pain Never Goes Away
Whilst there were only 11 participants in this mini survey, I am fairly confident that if you approach anyone with a chronic illness and asked them, “does chronic pain go away?”, their answer would be a “no”.
Having said that, life with chronic illness isn’t all doom and gloom — believe it or not, there are still [**pockets of joy to be found within the pain and suffering**](https://achronicvoice.com/chronic-illness-happiness-and-pain/). These moments may not be long-lasting, but they are certainly etched into our memories more deeply.
### Some Encouragement if You're Suffering Today
If you’re having a particularly bad day, here are [**seven reminders to keep you going**](https://achronicvoice.com/reminders-for-bad-days/). Some days I [**choose to let it all go**](https://achronicvoice.com/today-is-not-a-good-day/) and just sit through the depression and emotions. On other days I choose to [**keep going on autopilot**](https://achronicvoice.com/give-your-best-even-when-feeling-depressed/) like a zombie, just because I can still do so. Yet on other days, I choose to fight back and make a mark on my life.
I believe that context, circumstances, and the resources we have on hand — be they [**physical, mental, emotional, moral, spiritual**](https://achronicvoice.com/dimensions-of-wellness-thrive-chronic-pain/), or something else — fluctuates on a daily basis, just like chronic pain. And that adaptation is the best way to not only survive, but to [**make some meaning out of life with chronic illness**](https://achronicvoice.com/i-have-no-purpose-in-life/).
Here’s wishing you a good day (or [**one that will come soon**](https://achronicvoice.com/bad-days-good-day-finally-came/)!). I am personally recovering from a minor surgery at present, so for me, I’ll just sit with that for a bit until the pain dials back down again 🙂
## Sign Up for My Free Newsletter
Be the first to get the latest post updates in your inbox, and unlock the comments section. You will also receive an e-book full of uplifting messages, quotes and illustrations as a token of appreciation!
[Browse more membership plans here](#/portal/), or [make a one-off donation](https://achronicvoice.com/#/portal/support) instead.
Sign Up
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Read Related Posts:
- [The Chronic Pain Cycle & How to Break It (Top Tips From an Occupational Therapist)](https://achronicvoice.com/break-chronic-pain-cycle-occupational-therapist-tips/)
- [Why Self-Acceptance is Important When You Have a Chronic Illness](https://achronicvoice.com/self-acceptance-chronic-illness/)
- [Tell Me You're Chronically Ill Without Telling Me You're Chronically Ill (Chronic Illness Memes)](https://achronicvoice.com/chronic-illness-memes/)
- [How to Rewire the Brain to Manage Chronic Pain (& Resources to Help)](https://achronicvoice.com/rewire-brain-manage-chronic-pain/)
- [The Value in Seeking Out Moments of Gratitude (and How to do it)](https://achronicvoice.com/value-gratitude/)
Pin to Your Chronic Illness & Health Education Boards:
### References:
- Gasperi, M., Afari, N., Goldberg, J., Suri, P., & Panizzon, M. S. (2021). Pain and Trauma: The Role of Criterion A Trauma and Stressful Life Events in the Pain and PTSD Relationship. *The Journal of Pain, 22*(11), 1506–1517\.
### Treatment for AIN 3 — My Experience with Imiquimod & Anal Excision
URL: https://achronicvoice.com/treatment-for-ain-3-my-experience-imiquimod-anal-excision/
Last updated: 2026-08-02T16:51:00.000Z
At risk of turning this into a research-based article again, I am putting this note up front to remind myself to keep it as personal as I can, as part of the [**August 2026 Writing Prompts**](https://achronicvoice.com/august-writing-prompts-chronic-illness-disabilities-2026/) 😉 I will be sharing more about treatment for AIN 3 (Anal Intraepithelial Neoplasia 3) and my experiences with it, namely with Imiquimod and anal excision.
Do note that this article contains a lot of info about poop, so if that grosses you out — then you need to read more about it, because it’s just a normal human bodily function that’s essential in keeping you alive and healthy 😉 Right, now on to the fun bits 😛
[Join Us in the August 2026 Linkup Here](https://achronicvoice.com/august-writing-prompts-chronic-illness-disabilities-2026/)
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
Pin to Your Treatment for AIN 3 & Surgery Boards:
## What is AIN 3? — A Brief Overview
To put it in the simplest of terms, AIN are pre-cancerous cells in the anal region. According to the Anal Cancer Foundation, “anal precancers (also known as [Anal Intraepithelial Neoplasia or AIN](https://www.analcancerfoundation.org/what-is-anal-cancer/anal-pre-cancer/)) are growths and/or changes in the skin cells in the anal region”. There are various grades of AIN, ranging from one to three; grade three is the stage just before anal cancer.
AIN is mostly caused by HPV (human papillomavirus). I recall being advised against taking the HPV vaccine when I was a teenager, due to the doctor’s concerns about blood clots or bleeding, as [**I have Antiphospholipid Syndrome**](https://achronicvoice.com/living-with-antiphospholipid-syndrome/) (a blood clotting autoimmune disorder). I regret that decision to not take it back then, as I am taking the vaccine now anyway (more about that in a bit). Then again, back in those days the HPV vaccine wasn't as advanced as it is now, so I guess it is what it is.
Read Related Posts:
- [Antiphospholipid Syndrome Diagnosis: The A to Z Guide as a Patient](https://achronicvoice.com/antiphospholipid-syndrome-diagnosis-a-to-z-guide/)
- [An Experience from Hell: Pulmonary Embolism, DVTs & Antiphospholipid Syndrome](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)
- [Latest Research on Antiphospholipid Syndrome](https://achronicvoice.com/latest-research-on-antiphospholipid-syndrome/)
- [COVID-19 Vaccine Experiences from People with Chronic Conditions](https://achronicvoice.com/covid-19-vaccine-experiences/)
- [“But That’s Normal for Me” (Why I Mistook Dengue Fever for a Lupus Flare)](https://achronicvoice.com/mistook-dengue-fever-lupus-flare/)
## A Few Brief Notes About HPV — the Culprit of AIN 3
- HPV is not only one virus — there are in fact, [more than *200 types* of HPV](https://www.who.int/news-room/fact-sheets/detail/human-papilloma-virus-and-cancer).
- [Up to 85% of the human population would have had an HPV infection](https://www.cdc.gov/hpv/hcp/clinical-overview/index.html) in their lifetime, with many people not even knowing that they have it.
- For [90% of people](https://www.who.int/news-room/fact-sheets/detail/human-papilloma-virus-and-cancer), the body fends off the infection on its own, so I guess I’m just that unlucky immunocompromised girl.
- There are [12 high-risk HPV strains which can lead to cancer](https://www.cancer.gov/about-cancer/causes-prevention/risk/infectious-agents/hpv-and-cancer).
- The types of cancers that you can get include: anal, cervical, oropharyngeal (throat), penile, vaginal, and vulvar.
- [HPV16 and HPV18 alone contribute to 70% of cervical cancer](https://www.cancer.gov/types/cervical/causes-risk-prevention) cases globally.
### How Do They Test for HPV?
During a [pap smear (Papanicolaou test)](https://my.clevelandclinic.org/health/diagnostics/4267-pap-smear), your gynaecologist will take cell samples from your cervix to check for cell changes. This is different from an HPV test, which is used to specifically check for the HPV virus. However, these are often done together as co-tests.
It is essential for females with a cervix to get their pap smears done regularly in order to catch early signs of cervical cancer. According to Crifase and Parker (2025) and the Cleveland Clinic (2024a), the current [guidelines for pap smear and HPV tests](https://www.ncbi.nlm.nih.gov/books/NBK470165/) are:
- Females between 21 to 29 years old: every 3 years.
- Females between 30 to 65 years old: every 3 years. If done as a pap smear and HPV co-test, then every 5 years.
- Females older than 65 years of age: Not necessary if you’ve never had abnormalities in your cervical screenings or cervical cancer, and if you’ve had three consecutive pap smear tests in the past 10 years that were unremarkable (yes, that’s a good thing in medical terms!).
### The HPV Vaccine Can Still be Helpful Even if You’re Already Infected
I took my first dose of the HPV vaccine before the surgery, even though I already have a few of the HPV strains. Ironically, I don’t have HPV 16 or 18, which are the [two most dangerous strains in terms of cancer risk](https://ejgo.org/DOIx.php?id=10.3802/jgo.2024.35.e72) (Cho et al., 2024). It says ‘others’ in my report.
Anyway, according to both my gynaecologist and infectious disease doctor, the HPV vaccine may still confer some benefits. What it can still do, despite already being infected, is to [aid the body in its fight against the viruses](https://pmc.ncbi.nlm.nih.gov/articles/PMC5006801/), [prevent other variants from taking hold](https://www.nature.com/articles/s41598-025-92861-5), and/or prevent the same type of reinfection post surgery (Pruski et al., 2025a; Scherer et al., 2016). In some patients, [remission has been observed](https://pmc.ncbi.nlm.nih.gov/articles/PMC12568279/) as well, especially if they are younger in age (Pruski et al., 2025b).
#### Types of HPV Vaccinations
Note that there are a few different types of HPV vaccines; each of them cover different strains (always HPV16 and HPV18, then other strains as well according to risk). In the two studies done by Pruski et al. (2025a; 2025b), the latest HPV vaccination, Gardasil-9, was used. The ‘9’ indicates that it is a nine-valent vaccine, meaning that it protects against nine types of HPV strains.
#### HPV Vaccinations in Singapore
[In Singapore, two types of HPV vaccinations are available](https://vaccine.gov.sg/hpv) — HPV2 (Cervarix), and HPV9 (Gardasil-9). The former is available to all females, and the latter to both males and females. Cervarix is offered to all Secondary 1 and 2 students as part of school-based vaccinations, and free for females up to 17 years of age — so don’t miss out on it. You certainly don’t want your anus, cervix or vulva burned and sliced up like mine.
Do note that whilst Cervarix is subsidised, you need to pay out-of-pocket for Gardasil-9\. I would totally recommend going with Gardasil-9 though, as it protects you from another 20% of cancer-causing HPV strains.
Read Related Posts:
- [Invisible in Singapore: What's It Like to Live Here with Chronic Illnesses?](https://achronicvoice.com/invisible-in-singapore-chronic-illnesses/)
- [What's it Like to Live with Invisible Illness in Singapore? (7 Locals Share Their Thoughts)](https://achronicvoice.com/invisible-illness-singapore-locals/)
- [Pregnancy, Miscarriage & Women's Health in Antiphospholipid Syndrome](https://achronicvoice.com/womens-health-in-antiphospholipid-syndrome/)
- [A Hurried Return, but Chronic Illness's Opening Hours Remain Unchanged](https://achronicvoice.com/chronic-illness-opening-hours/)
- [When Your Stress & Fatigue Thresholds Suck (Also on Cute Cockatiels, Education via Zoom & Art Films for Rent)](https://achronicvoice.com/stress-fatigue-thresholds-suck/)
Pin to Your Sexual Health & Health Education Boards:
## My Symptoms for AIN 3
For me, it started out as a small growth in the anal area.I had assumed it was just a haemorrhoid or scarring from it, as I get them quite frequently due to thin, fragile skin from [**long-term steroid medications**](https://achronicvoice.com/high-dose-steroids/) used to control [**my autoimmune diseases**](https://achronicvoice.com/about/). My anal skin is able to tear from a simple bowel movement, so I apply medication ([Rectogesic / glyceryl trinitrate 0.2% w/w](https://www.ndf.gov.sg/about-drugs/product-information/sin12240p/)) on the [anal fissures](https://www.nuh.com.sg/health-resources/diseases-and-conditions/anal-fissures) almost every day, as it’s a non-stop ripping affair. My sexy life.
During [**my oesophageal surgery last June 2025**](https://achronicvoice.com/epiphrenic-esophageal-diverticulum-personal-experiences-tips/), the upper gastrointestinal surgeon took a biopsy of the lump, since I was passed out from the general anaesthesia anyway. The bad news was, it did indeed turn out to be something more sinister.
### I Also Needed Surgery for CIN 3 & VIN 3 Previously — Which are All Related to HPV
[CIN 3](https://my.clevelandclinic.org/health/diseases/15678-cervical-intraepithelial-neoplasia-cin) stands for “Cervical Intraepithelial Neoplasia Grade 3”, which is like AIN 3, but in the cervix instead. [VIN 3](https://www.cancerresearchuk.org/about-cancer/vulval-cancer/vulval-intraepithelial-neoplasia) stands for “Vulvar Intraepithelial Neoplasia Grade 3", which occurs on the vulva. I had laser surgery done about a decade or so ago to burn those precancerous cells away, and the surgeon did a fantastic job. The skin healed up with minimal scarring, which was my biggest fear. Now, they are returning as grade 1 again, so it’s a matter of watching and waiting.
And if you were wondering — yes, getting skin lasered off your vulva hurts. I remember squatting by the bed to work for weeks, as that was the only comfortable position. Tip: pouring water whilst peeing helps a lot (pee is slightly acidic, after all). Probably the same sort of advice as for postpartum women, really.
It’s important to get your pap smears and related tests done to detect these pre-cancerous cells early on. My oncology gynaecologist also examines my vulval and cervical surfaces for any changes in the skin on a regular basis — such as strange lumps or discoloration.
## Types of Treatment for AIN 3
There are a few types of surgeries that can be used as treatment for AIN 3\. According to Weis (2013), these are the [treatment options for AIN 3](https://pmc.ncbi.nlm.nih.gov/articles/PMC3684220/), which are still mostly relevant up to date (also see: [Benson et al., 2023](https://jnccn.org/view/journals/jnccn/21/6/article-p653.xml)):
- Surgical excision (cutting out/removing infected areas)
- Infrared coagulation ablation
- HRA (high-resolution anoscopy)-guided electrocautery ablation
- CO2 laser fulguration
- Topicals (fluorouracil or imiquimod creams)
- Topical trichloroacetic acid and bichloroacetic acid (cytotoxic therapies)
For me, they decided that anal excision would be most suitable, I’m guessing due to the location, manifestations, and type of cells I had. Before that, we also tried the topical, Imiquimod.
### My Experience with Imiquimod, a Non-invasive Treatment for AIN 3
Imiquimod is an [immune response modifier](https://www.clfoundation.org/imiquimod) that is [used to treat conditions](https://www.bad.org.uk/pils/imiquimod-cream) such as warts, actinic keratosis, and in my case, AIN. It works by stimulating the immune system in response to these conditions, with the hope that the AIN reduces in grade severity. It comes in the form of a cream in single dose packs, and I had to apply it 3 times a week, before giving the skin a break; it is a harsh medication, after all.
For me, the side effects were bad itching, and some soreness. But what was most annoying about Imiquimod is that you can’t apply more of it should you need to use the bathroom again after that. The advice is to use it before bedtime, but the problem is that I not only am an insomniac, but I have [**gastrointestinal issues ever since the oesophageal surgery**](https://achronicvoice.com/rare-disease-esophageal-diverticulum/). So that means that many of my nights are spent interrupted by vomiting or diarrhoeal episodes. Anyway, I tried my best to keep the cream in place until 8 hours later, when you should wash it off.
#### Sad to Say, Imiquimod Didn’t Work for Me
There was no harm in trying Imiquimod for me [even though it might have stimulated my autoimmune diseases](https://www.mayoclinic.org/drugs-supplements/imiquimod-topical-route/description/drg-20067474) because it’s non-invasive, which is considerably much better than needing to do any surgery at all. Sad to say, it didn’t seem to do much, and my AIN remained as AIN 3.
Another issue when it comes to dealing with AIN 3 is that it’s a rather ‘grey zone’ diagnosis, especially since I do not know what HPV strains I have, and all the specific locations they’re at. As a patient, you can either choose to watch and wait, or do preventative surgery. In the words of my surgeon, “if we do go ahead with the surgery, it would be like going in blind”.
However, she also told me that I would need a stoma bag for life in the worst case scenario — that is the main issue I wanted to avoid, so I decided to go ahead with the surgery. I really don’t need more permanent health issues piling up — I have enough from head to toe as it stands.
## Preparing for Anal Excision Surgery
As someone who lives with Antiphospholipid Syndrome, I need to [**bridge from warfarin to low molecular weight heparin**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome/) (LMWH) / Clexane before and after any surgery, no matter how minor it might be. Otherwise, I run the risk of clotting or bleeding, or both.
Apart from that, I also needed to attend a pre-op assessment. During this assessment, the [**doctors and anaesthetists**](https://achronicvoice.com/why-need-see-different-types-of-doctors/) run through your medications with you to see if any of them need to be paused for the surgery (these are often immunosuppressants, for fear of infections).
Since it was a ‘minor’ operation, I had to take all my medications as per usual, except for my emergency verapamil (for PSVT / arrhythmia). Nurses will also explain to you how to wash yourself just before the surgery, which includes a disinfecting shower gel, and a [fleet enema](https://www.fleetlabs.com/constipation-relief-products/enemas/fleet-saline-enema) (saline laxative) to clear out your bowels on the same day itself.
### A Horrible Pre-op Experience with Clueless Staff at SGH
My experience with the pre-op team was horrible. They were *so* disorganised, and the junior anaesthetist did not even know how to bridge the warfarin to Clexane properly. My nurse from my regular hospital had to talk to her over the phone. In addition, she was wearing her lanyard with her name tag tossed behind her back, until I insisted on writing down her name. Very unprofessional. Over the years, I must say that my tolerance for incompetent medical staff has become extremely limited. Yes, I am becoming *that* cranky middle-aged, jaded patient.
When I went to collect my medications at the pharmacist later, I had to go home empty-handed after waiting for 1.5 hours, because apparently the prescription wasn't correct.
## What is Anal Excision Surgery for AIN 3 Like?
The surgery was planned to last for 2h 45mins. The nurse who checked me in at the same-day admission centre confiscated my mobile phone and gave it to my parents, as she said that I couldn’t bring it in. However, *every* other patient in the waiting area was on their phones when I went in. It was ‘lucky’ that I was extremely exhausted, and spent the 2 – 3 hour wait time dozing off in a cold, hard chair. Otherwise, I would just have been sat on my ass doing absolutely nothing. I didn’t even have any paper to write on, or scribble or doodle.
When they finally came for me, the anaesthetist in charge told me that she had read my file, and noted that I was a high-risk patient (nothing new). She also warned me that I should not get any other surgeries done after this, until I had done the open heart surgery to fix my mitral valve stenosis. This is because general anaesthesia can cause heart rhythm problems, and [**I already have PSVT**](https://achronicvoice.com/heart-rhythm-disorder/), combined with a heart valve disease. She also inserted an arterial line into my wrist to monitor my blood pressure, so she could react more immediately if she needed to mid-op.
I liked her a lot, as she seemed to know what she was saying and doing, was willing to explain procedures, and patient with other staff on the operating team as well.
### An Invalidating Experience with My Surgeon
However, I never saw my surgeon at all; she came into the operating theatre only after I had passed out from the GA. When I was supposed to see her in the clinic two weeks later, she handed me off to her colleague instead as well. I will be changing doctors after this, as I find this **invalidating**,and an unacceptable level of patient care. I have many questions to ask, I am in horrible pain, and I need some level of accountability on their end.
### The Complications for *Any* Surgery Due to My Chronic Illnesses & Heart Diseases
Whilst anal excision for AIN 3 is normally a day surgery, I was kept under observation for a night as the anaesthetist was worried that my heart rhythm might go haywire. Thankfully, it was okay, even though the nurses weren’t very helpful at all.
I kept wetting the bed as they had injected a numbing anaesthesia to my entire anal and vulval area. They wouldn’t let me use a commode as my blood pressure was too low — but really it was my personal normal, which is in the 90s range. I was frustrated and snappy — just let me pee so I don't wet the bed and need to sleep on it, damnit. I think fundamentally what I was most upset about was them not trusting that I know my own body well enough.
Read Related Posts:
- [My Second Brush with Death: A Broken Heart (Literally)](https://achronicvoice.com/death-broken-heart/)
- [What It Feels Like to be Suddenly Disabled](https://achronicvoice.com/suddenly-disabled/)
- [After Surgery Care at Home: Hygiene Resources](https://achronicvoice.com/after-surgery-care-at-home-hygiene/)
- [Must Haves After Knee Surgery to Stay Comfortable in Bed](https://achronicvoice.com/must-haves-after-knee-surgery/)
- [Wound Care & What to Wear After Knee Surgery](https://achronicvoice.com/wound-care-what-to-wear-after-knee-surgery/)
Pin to Your Surgery & Chronic Illness Boards:
## Confined to Bed Rest the First Week After Surgery — with Lots of Blood, Sweat & Poop
Just like with my oesophageal surgery, the surgeon hadn’t warned me of the full range of possible side effects post-operation. She had only said I might get strictures and tissue scarring, I’m guessing as long-term issues from the surgery. But gosh, the short-term side effect of faecal incontinence was the worst, as I couldn’t holdanything in at all. I was basically leaking poop 24/7, and had to constantly clean up after myself even in the middle of the night, in a mess, and in pain.
The prophylactic antibiotics were necessary, but contributed to the diarrheal effect as well. They were also a higher dosage than what I was used to, so it was pretty much just trying to survive with lots of electrolytes the first week (and pad changing).
In addition, my period came a day after the surgery (it seems to have a knack for showing up at the worst times all the time). So it was all a bloody mess, quite literally.
## The Second Week was No Less Draining — Perhaps Even More so
The second week was no better. The faecal incontinence was just as bad, even after the course of antibiotics had ended. In fact, it might have been worse as I had become malnourished and severely fatigued from the endless loss of fluids and [**lack of sleep**](https://achronicvoice.com/wasting-time-sleep/). My INR wasn’t going up, which indicated that [**nutrients from food were probably not being absorbed in the gut**](https://achronicvoice.com/causes-dangers-malabsorption-get-nutrients/), and the blood thinners weren’t having an effect.
I [**needed to be pushed around in a wheelchair**](https://achronicvoice.com/physiotherapy-after-knee-operation/) when I went for other medical appointments, as I had become too weak to even walk. I felt **drained** and wouldn’t have been surprised if I looked ghastly pale, as that was how I felt on the inside, too. And of course, I had to go clean up in the bathroom outside too, as the faecal incontinence doesn’t care where you are, or how inconvenient it may be. Luckily, I had packed a ton of wet wipes, sprays, and creams.
Read Related Posts:
- [33 Things That Stop People with Chronic Illness From Leaving the House (Sans COVID-19)](https://achronicvoice.com/things-stop-people-chronic-illness-leaving-house/)
- [Best & Worst Part About Being Stuck at Home (From 32 People with Chronic Illness & Disability)](https://achronicvoice.com/stuck-at-home-with-chronic-illness-disability/)
- [29 Best Tips on How to Cope with Isolation at Home (from People Who Have Done and Will Do This All Their Lives)](https://achronicvoice.com/cope-with-isolation/)
- [Vitamin D & Vitamin K2: How They Boost Each Other in the Body ](https://achronicvoice.com/vitamin-d-vitamin-k2/)
- [40 People with Chronic Illness Share Their Best Pain Management Tips (What to Do if an Unforeseen Pain Flare Hits) ](https://achronicvoice.com/pain-management-tips-pain-flare/)
## Anchoring Rituals to Help with Healing & Restoring Balance
Even though I was in a rather weakened state, I decided to go for [**my lymphatic drainage appointment**](https://achronicvoice.com/nourish-naturally-skin-care-tips/) a bit after two weeks. I just thought that it might be healing for my body, even though I had to drag myself there with my trusty walking stick.
The night after the lymphatic drainage was actually the first time since the surgery that I started to feel a little better, so I suppose it did make a difference. Out of all the physical therapies I’ve tried, I’ve found [lymphatic drainage to be one of the most helpful](https://my.clevelandclinic.org/health/treatments/21768-lymphatic-drainage-massage), despite the gentleness of the strokes.
In addition to the lymphatic drainage, my therapist also helped to loosen the knotted up muscles in my face, jaw, and neck. I have TMJ disorder issues and grind my teeth violently at night, so the muscles in my neck are particularly tight.
She said that everything in the body is connected, so the orofacial pain can contribute to pain in the lower parts of my body, too. I believe her, as I too believe that everything in the body is interconnected. In fact, I think doctors need to collaborate more across specialisations, and stop viewing the body as ‘clean cut, sliced up parts’.
## In Conclusion to My Experience & Treatment for AIN 3
So there we have it — I had expected the pain, but wasn’t prepared for the torrent of poop, malnourishment, and fatigue linked to it. I do have some baseline level of Irritable Bowel Syndrome (IBS), but I know that many in the chronic illness community probably experience this on a frequent basis, especially those with conditions such as Irritable Bowel Disease (IBD), Celiac Disease, Crohn’s Disease, gluten intolerance, [**Short Bowel Syndrome**](https://achronicvoice.com/roy-george-dramatic-life-short-bowel/), and more.
I have my fingers crossed that the faecal incontinence is temporary. If you live with such issues as well, I would love to hear your best coping or poop management tips in the comments below. If you like, you can also share your funniest, most embarrassing or most painful experiences. Thanks for reading my disgusting entry this month 😉 I’m pooped for now (sorry I just had to 😆).
What Happened During Past Augusts:
- [August 2019: A Perfect Capture of Life with Chronic Illness](https://achronicvoice.com/capture-life-with-chronic-illness/)
- [August 2018: Boredom Can be Stimulating & Cuddling My Pet Birds](https://achronicvoice.com/boredom-stimulating-cuddling-birds-august-2018/)
- [August 2017: Missing a Stable Income & Striving Towards Healthier Habits](https://achronicvoice.com/missing-stable-income-striving-healthier-habits-august-2017/)
Read Related Posts:
- [“It’s in My Blood”: Sarah Frison — A Pastry Chef with a Stomach Disorder](https://achronicvoice.com/sarah-frison-pastry-chef-stomach-disorder/)
- [“It’s in My Blood”: Cheyanne Perry — Living a Full Life with Deadly Allergies](https://achronicvoice.com/cheyanne-perry-life-allergies/)
- [Dysphagia & Swallowing Problems (and How Oral Vitamin Sprays Can be of Help to You)](https://achronicvoice.com/dysphagia-oral-vitamin-sprays/)
- [November 2017: Discovering the Importance of Gut Health & Rediscovering Old Friendships](https://achronicvoice.com/discovering-gut-health-old-friendships-november-2017/)
- [Magazine Review: Lucky Peach’s Last Issue, Ever](https://achronicvoice.com/magazine-review-lucky-peach/)
Pin to Your Treatment for AIN 3 & Chronic Pain Boards:
### References:
- Anal Cancer Foundation. (n.d.). *Anal intraepithelial neoplasia: Anal precancer (AIN) signs, symptoms & treatment.* Retrieved 1 August 2026, from
- Benson, A. B., Venook, A. P., Al-Hawary, M. M., Azad, N., Chen, Y.-J., Ciombor, K. K., Cohen, S., Cooper, H. S., Deming, D., Garrido-Laguna, I., Grem, J. L., Hecht, J. R., Hoffe, S., Hubbard, J., Hunt, S., Hussan, H., Jeck, W., Johung, K. L., Joseph, N., … Stehman, K. (2023). Anal carcinoma, version 2.2023, NCCN clinical practice guidelines in oncology. *Journal of the National Comprehensive Cancer Network, 21*(6), 653–677\.
- British Association Of Dermatologists. (2026, February). *Imiquimod cream.*
- Cancer Research UK. (2025, August 26). *Vulval intraepithelial neoplasia (VIN).*
- Centers for Disease Control and Prevention. (2024, July 9). *Clinical overview of HPV.*
- Cho, E. H., Park, M.-S., Woo, H.-Y., Park, H., & Kwon, M.-J. (2024). Evaluation of clinical usefulness of HPV-16 and HPV-18 genotyping for cervical cancer screening. *Journal of Gynecologic Oncology, 35*(6).
- Cleveland Clinic. (2024a, August 19). *Pap smear.*
- Cleveland Clinic. (2024b, September 19). *Lymphatic drainage massage.*
- Cleveland Clinic. (2025, June 4). *Cervical dysplasia.*
- Crifase, C., & Parker, J. (2025, June 22). *Preventing cervical cancer: Best practices in pap and HPV testing.* In *StatPearls*. StatPearls Publishing.
- Cutaneous Lymphoma Foundation. (n.d.). *Imiquimod.* Retrieved 1 August 2026, from
- Mayo Clinic. (2026, February 1). *Imiquimod (topical route).*
- Ministry of Health Singapore. (n.d.). *Protect yourself against cervical cancer.* Retrieved 31 July 2026, from
- National Cancer Institute. (2024, August 2). *Cervical cancer causes, risk factors, and prevention.*
- National Cancer Institute. (2025, May 9). *HPV and cancer.*
- National University Hospital. (2024, May 16). *Anal fissures.*
- Pruski, D., Millert-Kalińska, S., Jach, R., & Przybylski, M. (2025). Effect of vaccination against HPV in the HPV-positive patients not covered by primary prevention on the disappearance of infection. *Scientific Reports, 15*(1), 12642\.
- Pruski, D., Millert-Kalińska, S., Jach, R., Żurawski, J., & Przybylski, M. (2025). Impact of vaccinating adult women who are HPV-positive or with confirmed cervical SIL with the 9-valent vaccine—A systematic review. *Viruses, 17*(10), 1377\.
- Scherer, E. M., Smith, R. A., Gallego, D. F., Carter, J. J., Wipf, G. C., Hoyos, M., Stern, M., Thurston, T., Trinklein, N. D., Wald, A., & Galloway, D. A. (2016). A single human papillomavirus vaccine dose improves B cell memory in previously infected subjects. *EBioMedicine, 10*, 55–64\.
- Weis, S. E. (2013). Current treatment options for management of anal intraepithelial neoplasia. *OncoTargets and Therapy, 6*, 651–665\.
- World Health Organization. (2024, March 5). *Human papillomavirus and cancer.*
### August Writing Prompts for People with Chronic Illness & Disability (2026 Edition)
URL: https://achronicvoice.com/august-writing-prompts-chronic-illness-disabilities-2026/
Last updated: 2026-08-29T15:09:54.000Z
## I Can't Believe It's Already Time for the August Writing Prompts!
It's so true that the older you get, the faster time flies by. I have also [**been on bed rest after a minor surgery**](https://achronicvoice.com/catch-up-chronic-illness-writing-community-july-2026/), so I guess that doesn't help! Anyway, if you live with a chronic illness or disability, come check out the 2026 August writing prompts, and do join us if you're feeling up to it. We'd love to hear more about your life with chronic illness, how you're coping, and what you'll be up to this month!
*\*Disclaimer: This post/linkup is meant for educational purposes, and is based on my/our personal experiences as patient(s). *I/We are not doctors, and nothing in this post or its associated links should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post/linkup may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
Pin to Your Chronic Illness Writing Prompts & Linkup Boards:
## What the 2026 August Writing Prompts are About, and How to Participate
The writing prompts are a monthly get-together for anyone with a chronic illness, mental illness or disability. An opportunity to share, to listen, and to learn from one another through shared writing prompts.
I also think it’s a great way to provide insight into life with chronic pain and disabilities, from many different points of view. You can choose to write about your latest experiences with chronic illness and/or disability, or even turn it into an [evergreen blog post](https://mailchimp.com/resources/evergreen-content/).
All you have to do is write a post using **at least three of the writing prompts** listed below, and publish it on your blog, or to a free writing platform such as [Medium](https://medium.com/) or [SubStack](https://substack.com/@achronicvoice) (don't forget to set the post for public viewing!). Then click on the **blue ‘Add Link’ button** in the widget below to add your blog post to this page. Voilà, you’re now part of the linkup party!
## Simple Rules for the 2026 August Writing Prompts
- Only **submit one link** per website/blog.
- If you choose to participate, do **comment on at least two** other blog posts in this linkup by the end of the month. Return to check at a later date if there aren't enough entries yet. Helping to spread the word on your social media is always appreciated, but not required.
- Linkups start on the first of every month. There will be five different writing prompts. It will close at the end of each month before midnight. All timings listed are in [Singapore time](https://www.google.com.sg/search?q=singapore+time&oq=singapore+time&aqs=chrome..69i57j69i60l2j0l3.1041j0j1&sourceid=chrome&ie=UTF-8) (+8 GMT).
- Pick **at least three** of the writing prompts to write about. Five is best, of course!
- **Insert a link to this post** when you submit your blog entry for auto verification.
- Failure to follow these rules might get you blacklisted from future writing prompt linkups. Let's keep it fair for all 🙂
## August 2026 Awareness Dates
Here are a few health events (and more) happening this month, should you feel like talking a bit about them using the August writing prompts.
- **World Lung Cancer Day (01 August).** Lung cancer isn't just a "smoker's disease"; according to the Lung Cancer Foundation of America (LCFA), up to [60% of patients are non-smokers](https://lcfamerica.org/get-involved/raise-awareness/honoring-world-lung-cancer-day/), or have quit years ago. Early screening saves lives.
- [**Left Handers Day**](https://lefthandersday.com/) **(13 August).** Okay, I'm biased and had to include this one, as I'm a leftie myself. We often advocate for an inclusive society, but I bet most people never notice how lefties cleverly adapt to a predominantly right-handed world rather seamlessly 😉
- [**World Humanitarian Day**](https://www.weforum.org/stories/resilience-peace-and-security/what-is-world-humanitarian-day-un/) **(WHD) (19 August).** WHD honours the sacrifices and dedication of humanitarian workers. They are the ones who step into disaster zones and other dangerous places to help those in great need. The humanitarian system itself is underfunded, and needs more awareness raised.
- **International Overdose Awareness Day (IOAD) (31 August).** IOAD is a global campaign to end deaths from overdose, which are largely preventable. The [CDC has an IOAD toolkit here](https://www.cdc.gov/overdose-prevention/php/toolkits/ioad.html) which you can use to help raise awareness together.
The following awareness campaigns span the entire month:
- [**National Immunisation Awareness Month**](https://www.cdc.gov/vaccines/php/national-immunization-awareness-month/index.html) **(NIAM).** According to the CDC, "NIAM aims to raise awareness about the importance of vaccination across the lifespan to help protect communities from serious diseases". Throughout August, the [American Association of Immunologists](https://www.aai.org/About/National-Immunization-Awareness-Month) (AAI) will also be sharing information and resources you can use to help raise awareness.
- [**Psoriasis Action Month**](https://www.psoriasis.org/psoriasis-action-month/)**.** Psoriasis can manifest in different ways on the skin, and no matter which way you look at it — they all look painful. One in three people with psoriasis also have [Psoriatic Arthritis](https://www.papaa.org/resources/learn-about-psoriasis-and-psoriatic-arthritis/just-diagnosed/what-is-psoriatic-arthritis/) (PsA), which is an autoimmune condition.
## Presenting the 2026 August Writing Prompts 🎉
### 1\. Confining
Perhaps you've been confined to bed rest or [**stuck at home**](https://achronicvoice.com/stuck-at-home-with-chronic-illness-disability/) due to chronic pain, chronic fatigue, or don't have anyone to help you travel outside safely. You might also be [**limiting certain things in your diet**](https://achronicvoice.com/self-reminder-listening-to-your-body-june-2018/) or lifestyle, such as your sugar intake, or overzealousness for certain activities. Or perhaps you're [**trying not to go beyond your energy boundaries**](https://achronicvoice.com/healthy-boundaries-relationships-chronic-illness/) or limitations, and/or ensuring that other people respect them, too.
A bit of a cultural tidbit — in Chinese and other Asian cultures, pregnant women also [spend their first postpartum month 'in confinement'](https://www.panda.org.au/articles/traditional-birthing-practices-postnatal-confinement), which is actually a positive thing in this instance. They often hire 'confinement nannies' who help restore them to health with herbal soups, postnatal massages, and other healing practices. Here are some interesting [differences in confinement practices](https://www.healthxchange.sg/pregnancy/postnatal/confinement-dos-donts), between Chinese, Malay, and Indian communities in Singapore.
Read Related Posts:
- [What It Feels Like to be Suddenly Disabled](https://achronicvoice.com/suddenly-disabled/)
- [The Causes & Dangers of Malabsorption & An Easy Way to Get Your Nutrients](https://achronicvoice.com/causes-dangers-malabsorption-get-nutrients/)
- [How to Have a Healthy Relationship with Your Body (Even with Chronic Illness)](https://achronicvoice.com/healthy-relationship-with-body-chronic-illness/)
- [What's it Like to Live with Invisible Illness in Singapore? (7 Locals Share Their Thoughts)](https://achronicvoice.com/invisible-illness-singapore-locals/)
- [Tips & Tools to Help Regain Independence with a Disability or Chronic Illness](https://achronicvoice.com/regain-independence-disability-chronic-illness/)
### 2\. Draining
What's the main activity that's [**draining you of energy**](https://achronicvoice.com/triggers-trigger-triggers-re-stabilisation/) this month? You might find [**certain tasks more draining than others**](https://achronicvoice.com/pain-flare-triggers/) for different reasons on different days. Perhaps certain conversation topics, human behaviours, medical issues, work or life events are sapping you of energy. You could also be [**draining water or liquid in your garden**](https://achronicvoice.com/shannon-giroux-better-home-multiple-sclerosis/), for cooking, or some other household chore.
### 3\. Invalidating
Have you been feeling invalidated of late, perhaps in your dealings with uncaring doctors, test results, society in general, or something else? You could also feel that a certain person, manner of speaking, [**treatment or behaviour towards you is invalidating**](https://achronicvoice.com/refused-treatment-hospital/). Alternatively, it could be the more literal sense of the word, where you're invalidating a document or contract. It could also be logical, where you are disputing a claim, fact, or study/report.
### 4\. Anchoring
Do you have daily rituals or goto [**practices that help anchor you**](https://achronicvoice.com/lessons-on-mindfulness-thich-nhat-hanh/) whenever you feel anxious, or are [**huddled up from chronic pain**](https://achronicvoice.com/pain-management-tips-pain-flare/)? You could be anchoring your thoughts or emotions using certain objects, mantras, sensations, people, and more. Oh, and I doubt any of us here are anchoring a boat, but if you actually are — I would *love* to hear about your adventures!
### 5\. Restoring
Does your physical or mental health need restoring this month, and how do you plan to go about the [**healing process**](https://achronicvoice.com/road-to-recovery-longest/)? Or perhaps you're trying to restore the appearance of a certain room in your house, trying to restore your car or computer so that it's in tiptop condition, or trying to [**restore a relationship**](https://achronicvoice.com/dating-with-chronic-illness/). You could also be trying to restore a certain body part that might be damaged or decaying, such as your teeth, nails or vision.
## Join Us in the 2026 August Writing Prompts Here
I hope that at least a few of these writing prompts stir your creative juices, and I truly do hope to hear from you. Let's aim to increase the participation, and help support one another in this online community space 😊
You can [**read** **past linkup entries here**](https://achronicvoice.com/diary-entries/) for inspiration or ideas on how or what to write about. Feel free to write in whatever style or form suits you, however. These writing prompts are meant to be a relaxing and cathartic community activity, after all. Happy writing and sharing!
## Sign Up for My Free Newsletter
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[Browse more membership plans here](#/portal/), or [make a one-off donation](https://achronicvoice.com/#/portal/support) instead.
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Pin to Your Chronic Illness, Disability & Community Boards:
Read Related Posts:
- [Invisible Cities Linkup: Pros & Cons of Living with Chronic Illness in Your City](https://achronicvoice.com/invisible-cities-linkup/)
- [My Responses to “A Day in the Life” Linkup (What Does 'Normal' Even Mean?)](https://achronicvoice.com/a-day-in-the-life/)
- [29 Best Tips on How to Cope with Isolation at Home (from People Who Have Done and Will Do This All Their Lives)](https://achronicvoice.com/cope-with-isolation/)
- [12 Chronic Illness Bloggers Share Their Top Posts for 2020](https://achronicvoice.com/chronic-illness-bloggers-top-posts-2020/)
- [#ProjChronicWisdom: Simple Pleasures I Can Enjoy Whilst Stuck in Bed with Pain](https://achronicvoice.com/projchronicwisdom-simple-pleasures-enjoy-pain/)
### A Quick Catch-up with My Chronic Illness Writing Community This July 2026
URL: https://achronicvoice.com/catch-up-chronic-illness-writing-community-july-2026/
Last updated: 2026-07-11T08:02:39.000Z
This quick catch-up post is written in response to the 2026 July Writing Prompts — come join our little online writing community for the chronically ill and disabled, too!
[View the Writing Prompts for July 2026](https://achronicvoice.com/2026-july-writing-prompts-chronic-illness-disability/)
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
Pin to Your Chronic Illness & Writing Prompts Boards:
## A Quick Catch-up Since Our Last Linkup
I suppose “**updating**” would be a good word to start with — kind of like a mini catch-up on what and how everyone is doing! A quick catch-up on my end:
- [**I had surgery for oesophageal diverticulum**](https://achronicvoice.com/epiphrenic-esophageal-diverticulum-personal-experiences-tips/) back in June 2025, and it hasn't really settled down since. So I guess the issues I need to deal with have multiplied instead. I just need to find ways to live with a new issue... again.
- [**I moved this website from WordPress to Ghost Pro**](https://achronicvoice.com/did-you-know-a-chronic-voice-is-10-years-old/), because I was sick and tired of paying for plugins, and the need to constantly update them. So far, so good, though I'd like to eventually self-host the website. Trying to move towards a $0 model (or as close as is possible) because — you know why 'because'.
- I turned 40 in April, and was a little depressed. Is it just me, or did anyone else felt that way when they turned 40? (Or if you're turning 40 soon.) I just feel like it's a big day where people look back to see what they've accomplished in life in terms of career, family, and all that. And I feel like I'm still a young adult [**who will never be allowed to adult**](https://achronicvoice.com/suicide-chronic-illness/).
Right, now onwards to what I will be doing this July 2026, and what I have planned on a longer-term scale!
Read Related Posts:
- [Grieving the Life That I Will Never Have (Due to Chronic Illness & Disability)](https://achronicvoice.com/grieving-the-life-i-will-never-have-chronic-illness-disability/)
- [Life is a Long Process of Becoming Into...](https://achronicvoice.com/life-is-a-long-process-of-becoming-into/)
- [Every Next Level of Your Life Will Demand a Different You](https://achronicvoice.com/next-level-life/)
- [I Have No Purpose in Life, and Therein Lies My Life Purpose](https://achronicvoice.com/i-have-no-purpose-in-life/)
- [April 2018: Marvelling at the Miracle of Life & Splurging for My Birthday](https://achronicvoice.com/marvelling-miracle-of-life-splurging-birthday-april-2018/)
## Recommitting to My Studies
I have had to take three semesters of leave from my studies, as I had that stupid oesophageal surgery, which opened the gates to a barrage of new health problems. Then, it was a run-on of more 'minor' issues and flare ups with [**my various chronic illnesses**](https://achronicvoice.com/about/). You know how it goes — before you know it, you've turned 40, and also missed 1.5 years of your studies.
It's a little depressing, as I will need to befriend new Gen Z-ers when I go back to school. I only had one real friend when I was still studying there previously. I mean no offense if you are a Gen Z reader; it's just that my classmates are young enough to be my kids. So the conversation topics differ quite a bit, as do our priorities and focus in life.
### The Limitations Job & Health-wise
I was undecided as to whether I should return to my studies for a spell, as I realised that what I had wanted to do with the degree — language documentation — was quite impossible for me; I would need to further pursue a phD, and the only viable option to do that as a 'real job' is to work as a professor at a university, with language documentation as a 'side gig'.
I'd say that pursuing my studies *even* further isn't the main issue, but there is no way I could work as a professor or teacher of any kind. It's not just not my thing, but facing a group of students and being responsible for them is physically impossible as someone who's chronically ill and disabled.
Regardless, I have two more years of my studies to go. So I am going to just **recommit** to the programme, and see it to the end. No more thinking and overthinking — just get it done with, pay off the loans, and I'm sure that there are always opportunities that overlap in my current line of work, and areas of knowledge.
Read Related Posts:
- [Why 'Easy' Part-Time Jobs are Not That Easy for Those with Chronic Illness](https://achronicvoice.com/part-time-jobs-not-easy-chronic-illness/)
- [The Barriers That Throw Rocks into My Bucket List with Chronic Illness](https://achronicvoice.com/bucket-list-chronic-illness/)
- [What It Feels Like to be Suddenly Disabled](https://achronicvoice.com/suddenly-disabled/)
- [Sometimes, Physical Pain Isn’t the Worst Part About Chronic Illness](https://achronicvoice.com/worst-part-about-chronic-illness/)
- [A Roundup of Biggest Pain Flare Triggers (from 40 People with Chronic Illness)](https://achronicvoice.com/pain-flare-triggers/)
## A Triple Bracing — School, Work & Surgery
Yes, I am [**bracing myself for the return to school**](https://achronicvoice.com/going-back-to-school-as-an-adult-disability-chronic-illness/), as there will be major changes to my routines and schedules. I am not a morning person by nature, and I also need to [**wait about two hours for my meds to kick in every day**](https://achronicvoice.com/a-day-in-the-life/), before I'm somewhat functional. I wanted to take afternoon classes exclusively, but clinched two morning ones that each last for 4 hours at a stretch, during the bidding session for classes (horrible system, btw). That will be tough for me, but I will try to [**cushion them with 'white space days'**](https://achronicvoice.com/prevent-pain-flare/) in between.
Apart from school, I *might* also take on a job from a new client. I don't want to jinx it, so all I'll say for now is that I will need to be very disciplined in juggling between work and school, and not overcommit, as I tend to do.
Finally, the soonest thing I am **bracing** for is a 'minor' surgery to remove some pre-cancerous cells on the 10th of July. So if I'm offline during those couple of days — you know why!
Read Related Posts:
- [The Annoying Thing About Living with Antiphospholipid Syndrome (My Personal Experiences)](https://achronicvoice.com/living-with-antiphospholipid-syndrome/)
- [It is \*Always\* Possible to Make Time for What Matters Most](https://achronicvoice.com/make-time-what-matters-most/)
- [Chronic Stress, the Silent Assassin](https://achronicvoice.com/chronic-stress-silent-assassin/)
- [The Eternal Spoonie Struggle: Justifying Rest & Recovery Time](https://achronicvoice.com/spoonie-justifying-rest-recovery-time/)
- [September 2017: Resisting the Urge to Stress Myself Out Unnecessarily & Supporting the Supporters](https://achronicvoice.com/resisting-stress-supporting-supporters-september-2017/)
## Documenting for Health & Personal Purposes
### Documenting My Sleep Patterns for My Psychiatrist
I suffer from insomnia; the [**unpredictable vomiting episodes at night**](https://achronicvoice.com/rare-disease-esophageal-diverticulum/) do not help, and I think I got the night-owl genes from my mum to boot — she is often up later than even I am. I also realise I need about 10 hours of sleep a day to be at my best — whatever 'best' means in relation to being chronically ill. (That is quite an awful lot 😔 What is yours, out of curiosity?)
Thus, my psychiatrist — who helps to [**manage my sleep**](https://achronicvoice.com/wasting-time-sleep/) and mood issues — has asked me to document my sleeping and waking times, and also how frequently I wake at night. So far, it's been random pepperings of 'normal' 10 hour sleep stretches, alternated with nights where I wake up every 30 minutes to vomit until dawn.
Pin to Your Mental Health & Support Group Boards:
### Documenting My Weekly Reflections
In relation to a more interesting type of 'documentation' — I enjoy [**drawing a tarot spread for the week ahead**](https://achronicvoice.com/uplifting-activities-to-do-while-recovering-in-bed/#tarot). I pair this with a significator card, which I use to set my intentions or to ground me on a weekly basis. I don't use tarot for fortune-telling, but more as a [**mindfulness tool**](https://achronicvoice.com/365-mindfulness-journaling-prompts-for-self-improvement/). Having said that, I need to pay more attention to my reflections, or they're pretty much just pretty thoughts scribbled down 😛
So far, I've gained many interesting snippets of insight every week, when I reflect on each card paired with my significator. Sometimes, a 'bad' card turns out to be surprisingly 'good', when [**viewed from another perspective**](https://achronicvoice.com/keeping-up-despite-pain/); not a different perspective, but a more complete one, in the grand scheme of things.
Question — I want to expand this blog to add on a paid membership plan, simply to cover blogging fees, and hopefully earn a wee bit more. Do you think sharing these insights would be of any interest to people?
Read Related Posts:
- [Fun Things To Do While Recovering From Surgery: Hobbies, Crafts & Games](https://achronicvoice.com/fun-things-to-do-while-recovering-from-surgery/)
- [The Extra Costs of Living with a Chronic Illness or Disability (That the News Often Don't Reflect)](https://achronicvoice.com/extra-costs-living-chronic-illness-disability/)
- [There's No One Way to Live Your Life](https://achronicvoice.com/no-one-way-live-your-life/)
- [Clinical Depression: Diagnosed 10 Years Late](https://achronicvoice.com/depression-diagnosed-late/)
- [August 2017: Missing a Stable Income & Striving Towards Healthier Habits](https://achronicvoice.com/missing-stable-income-striving-healthier-habits-august-2017/)
Tarot Decks I Own & Use:
Golden Art Nouveau Tarot:
[](https://www.amazon.com/dp/0738763462?tag=achronicvoice-20&linkCode=ogi&th=1&psc=1 "Golden Art Nouveau Tarot")
Da Brigh Black Tarot Cards Deck for Shadow Work:
[](https://www.amazon.com/dp/B089DMX1PD?tag=achronicvoice-20&linkCode=ogi&th=1&psc=1 "Da Brigh Black Tarot Cards Deck for Shadow Work")
Heaven & Earth Tarot Kit:
[](https://www.amazon.com/dp/073876731X?tag=achronicvoice-20&linkCode=ogi&th=1&psc=1 "Heaven and Earth Tarot Kit")
Tarot Decks I Have (& Want!):
- [Golden Art Nouveau Tarot](https://www.amazon.com/dp/0738763462?&linkCode=ll2&tag=achronicvoice-20&linkId=232a9a17e99c6dff4f96dc313954465a&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Da Brigh Black Tarot Cards Deck for Shadow Work](https://www.amazon.com/dp/B089DMX1PD?&linkCode=ll2&tag=achronicvoice-20&linkId=5f49f266f91c11431a87912390dc9812&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Heaven & Earth Tarot Kit](https://www.amazon.com/dp/073876731X?&linkCode=ll2&tag=achronicvoice-20&linkId=0d5e7ee346708adeded0b671c825b9c5&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Rider-Waite Tarot Deck (the original modern tarot deck)](https://www.amazon.com/dp/091386613X?&linkCode=ll2&tag=achronicvoice-20&linkId=8787ef853fc47d827fdff2e9224f8d5f&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Cats Rule the Earth Tarot: 78-Card Deck and Guidebook for the Feline-Obsessed](https://www.amazon.com/dp/1419766066?&linkCode=ll2&tag=achronicvoice-20&linkId=2971740ed00567eb0b680e30158bb666&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Tarot of the Woodland Wardens: 78-Card Deck & Guidebook](https://www.amazon.com/dp/B0DS4CCB3K?&linkCode=ll2&tag=achronicvoice-20&linkId=58087b4a9852a26446e097934a717a9d&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Myripoly Pink Tarot Cards Deck Set for Beginners, with Meanings On Them](https://www.amazon.com/dp/B0BXHF851L?th=1&linkCode=ll2&tag=achronicvoice-20&linkId=c963257580d17b4548a90b54a724920f&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Tempest Tarot Deck: 78-Card Tarot Deck with Nautical Themes](https://www.amazon.com/dp/1646712455?&linkCode=ll2&tag=achronicvoice-20&linkId=f79e838857ab7f1d15db6ccebed3719d&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
Tarot Books I Use for Reference:
- [The Big Book of Tarot: How to Interpret the Cards and Work with Tarot Spreads for Personal Growth (Weiser Big Book Series)](https://www.amazon.com/dp/157863668X?&linkCode=ll2&tag=achronicvoice-20&linkId=57d18921ddea6e6b5dab9bf867435244&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Guided Tarot: A Beginner's Guide to Card Meanings, Spreads, and Intuitive Exercises for Seamless Readings (Guided Metaphysical Readings)](https://www.amazon.com/dp/0593196996?&linkCode=ll2&tag=achronicvoice-20&linkId=1e9a2350c12704d3762a24895da0ea08&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Holistic Tarot: An Integrative Approach to Using Tarot for Personal Growth](https://www.amazon.com/dp/158394835X?&linkCode=ll2&tag=achronicvoice-20&linkId=d8325e7f20be2a19c2eb924673ccc47b&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [1001 Tarot Spreads: The Complete Book of Tarot Spreads for Every Purpose (1001 Series)](https://www.amazon.com/dp/1454942150?&linkCode=ll2&tag=achronicvoice-20&linkId=2fc2cf7fa418e09e7f8b6fb61992bfe9&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
## Spoiling My Furry Companion & Pampering My Skin
### Talisker — My Heart & Soul
Finally, I think I've been spending too much money on [my furry little companion, Talisker](https://achronicvoice.substack.com/p/the-way-my-dog-talisker-brings-me) (so now you know where my money goes to...). But I don't mind pampering him with quality time and treats. He is my world; [**I don't have any good friends left**](https://achronicvoice.com/better-friend-chronic-illness/) (maybe just one), as they have all started their own families, or are too busy with their careers — things that I also wish I could have in life, but am unable to.
[**I don't bear grudges toward them**](https://achronicvoice.com/we-shouldnt-expect-people-to-understand/), because I understand that people drift apart at different stages in their lives. Yet, sometimes I wish they would just say 'hi' (and it's not that I haven't tried to keep in touch on my part, either). These are all good, kind-hearted, lovely people. But life has a way of keeping even these angels overwhelmed — perhaps even more so.
Modern Talking - You're My Heart, You're My Soul (Official Video)
Read Related Posts:
- [The Savagery of Panic Attacks & The Saving Grace of Internet Friends](https://achronicvoice.com/panic-attacks-internet-friends/)
- [September 2018: Reconnecting with Friends & Family, and Sharing on Social Media](https://achronicvoice.com/reconnecting-friends-family-sharing-social-media-september-2018/)
- [November 2018: Meeting and Collaborating with Chronically Ill People in Real Life](https://achronicvoice.com/meeting-collaborating-chronically-ill-real-life-november-2018/)
- [November 2017: Discovering the Importance of Gut Health & Rediscovering Old Friendships](https://achronicvoice.com/discovering-gut-health-old-friendships-november-2017/)
- [It’s in My Blood”: Kelly Hodgkins — Riding Horses with CRPS](https://achronicvoice.com/kelly-hodgkins-riding-horses-with-crps/)
### The Vulnerabilities Beneath the Skin
I admittedly have also been pampering myself a little in terms of [**skincare products**](https://achronicvoice.com/nourish-naturally-skin-care-tips/). Perhaps it's that I'm getting older, and finally realised that ageing is a thing 😆 I think they call it vanity 😉 Perhaps it's also because I have been single for a while, and whether I care to admit it or not — I [**fear being #AloneForever**](https://achronicvoice.com/cope-with-isolation/).
You might be surprised, but many [**potential partners**](https://achronicvoice.com/dating-with-chronic-illness/) shun you when they learn that you have a chronic illness — and worse — if you have a physical disability, too. Whilst I wouldn't want such people as partners anyway, that's the cold, hard reality that many people with disabilities face (though not all, for sure).
Having said that, I do believe that there are still good people out there. And I still choose to put myself out there, as I operate on a "don't try, don't know" mentality in all areas of my life.
### Beyond Beauty — Face Gua Sha is Surprisingly Relaxing
Whilst [**gua sha can be used on the face**](https://achronicvoice.com/therapies-for-pain-after-major-knee-surgery/) for beauty reasons, I've been doing it more for relaxation purposes a couple times a week before bed. To my surprise, I fell asleep within 30 minutes the first few times I did it (usually I toss and turn for two hours or so).
I've discovered little dots of muscles in my face that ache each time I gua sha them, and each time the spots differ. Interestingly, even the lips and places on your face you wouldn't think could be achy, can be tense.
Here are the three books I've been referring too for a few simple strokes, should you be interested, too:
Books I Refer to for Gua Sha & Facial Massage:
- [Press Here! Face Workouts for Beginners: Pressure Techniques to Tone and Define Naturally](https://www.amazon.com/dp/1592339425?&linkCode=ll2&tag=achronicvoice-20&linkId=7099bcfeefb03ef8f410006083938149&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Face Yoga: Sculpt, Lift & Tone in Just 10 Minutes a Day](https://www.amazon.com/dp/B0F4QF1R6V?&linkCode=ll2&tag=achronicvoice-20&linkId=623fcc9558c553b57cf140f8af2c21ce&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
- [Facial Gua Sha: A Step-by-step Guide to a Natural Facelift](https://www.amazon.com/dp/0956150764?&linkCode=ll2&tag=achronicvoice-20&linkId=f689ffc1e1a0a4344d076919760ab632&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl)
Read Related Posts:
- [How to Use the 7 Dimensions of Wellness to Thrive with Chronic Pain](https://achronicvoice.com/dimensions-of-wellness-thrive-chronic-pain/)
- [How Does Antiphospholipid Syndrome Affect The Body? (Beyond the Blood to Major Organs)](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body/)
- [When Autoimmune Disorder Ravages Your Face (and How That Led to My Body Dysmorphic Disorder)](https://achronicvoice.com/body-dysmorphic-disorder/)
- [12 Lessons on Mindfulness (or “How to Relax” by Thich Nhat Hanh)](https://achronicvoice.com/lessons-on-mindfulness-thich-nhat-hanh/)
- [40 People with Chronic Illness Share Their Best Pain Management Tips (What to Do if an Unforeseen Pain Flare Hits)](https://achronicvoice.com/pain-management-tips-pain-flare/)
## In Conclusion to My Quick Catch-up This July 2026
So what have you been up to, and will be up to this July 2026? Come share in the writing prompts below. I truly hope to see a few friendly faces and regulars, and can't wait to read and share your entries 😊 Have a good July!
[Participate in the July 2026 Linkup Here](https://achronicvoice.com/2026-july-writing-prompts-chronic-illness-disability/)
## Sign Up for My Free Newsletter
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[Browse more membership plans here](#/portal/), or [make a one-off donation](https://achronicvoice.com/#/portal/support) instead.
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Pin to Your Chronic Illness, Disability & Writing Boards:
### July Writing Prompts for People with Chronic Illness & Disability (All New 2026 Edition)
URL: https://achronicvoice.com/2026-july-writing-prompts-chronic-illness-disability/
Last updated: 2026-07-13T03:24:01.000Z
## Using the 2026 July Writing Prompts to Break That Writer's Block
So, I haven't ran a linkup party in *ages*. I haven't written a new post on the blog for a while as well, as I [**wanted to focus on drafting my memoir**](https://achronicvoice.com/bucket-list-chronic-illness/). However, believe it or not, despite having an outline and the time to work on it for the past couple of months, I've barely gotten past chapter one.
I feel like I need to do some freeform writing, as I've been mainly working on [**medical research articles**](https://achronicvoice.com/latest-research-on-antiphospholipid-syndrome/) the past couple years, both for this website, and for clients. That, or formal copywriting for websites, and optimising them for SEO. I feel like my brain is 'stuck' with only formal instead of creative writing now, and I'd like to break that writer's block.
So will you help me out by joining me in kicking off the monthly linkups again? I [**consolidated all my previous entries on my “Diary Entries” page**](https://achronicvoice.com/diary-entries/), but now, I'd like to re-open this to the chronic illness and disabled community again on a monthly basis (or as close to monthly as I can). Let's do this together!
*\*Disclaimer: This post/linkup is meant for educational purposes, and is based on my/our personal experiences as patient(s). *I/We are not doctors, and nothing in this post or its associated links should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post/linkup may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
Pin to Your Chronic Illness & Writing Community Boards:
## What the 2026 July Writing Prompts are About, and How to Participate
The writing prompts are a monthly get-together for anyone with a chronic illness, mental illness or disability. An opportunity to share, to listen, and to learn from one another through shared writing prompts.
I also think it’s a great way to provide insight into life with chronic pain and disabilities, from many different points of view. You can choose to write about your latest experiences with chronic illness and/or disability, or even turn it into an [evergreen blog post](https://mailchimp.com/resources/evergreen-content/).
All you have to do is write a post using **at least three of the writing prompts** listed below, and publish it on your blog, or to a free writing platform such as [Medium](https://medium.com/) or [SubStack](https://substack.com/) (don't forget to set the post for public viewing!). Then click on the **blue ‘Add Link’ button** in the widget below to add your blog post to this page. Voilà, you’re now part of the linkup party!
## Simple Rules for the 2026 July Writing Prompts
- Only **submit one link** per website/blog.
- If you choose to participate, do **comment on at least two** other blog posts in this linkup by the end of the month. Return to check at a later date if there aren't enough entries yet. Helping to spread the word on your social media is always appreciated, but not required.
- Linkups start on the first of every month. There will be five different writing prompts. It will close at the end of each month before midnight. All timings listed are in [Singapore time](https://www.google.com.sg/search?q=singapore+time&oq=singapore+time&aqs=chrome..69i57j69i60l2j0l3.1041j0j1&sourceid=chrome&ie=UTF-8) (+8 GMT).
- Pick **at least three** of the writing prompts to write about. Five is best, of course!
- **Insert a link to this post** when you submit your blog entry for auto verification.
- Failure to follow these rules might get you blacklisted from future writing prompt linkups. Let's keep it fair for all 🙂
## July 2026 Awareness Dates
Here are a few health events happening this month, should you be at a loss for words, and needed something to stir those creative or advocacy juices! Also,Happy Canada Day to all my Canadian friends and readers 🙂
- **Chronic Disease Awareness Day (10 July).** Honestly, this irks me a little — why does chronic disease awareness only get *one* miserable day?! Anyway, I digress. Here are a [few ways to show support and get involved](https://chronicdiseaseday.org/).
- **World Brain Day (22 July).** According to the World Federation of Neurology (WFN), "more than 3.4 billion people currently live with neurological conditions, making brain disorders the leading cause of disability worldwide". World Brain Day aims to bridge the gaps in healthcare in relation to neurological health, and advocates for positive change. [Get the campaign resources on the WFN website here](https://wfneurology.org/world-brain-day-2026).
- **World Sjögren's Day (23 July).** The [Sjögren's Foundation website provides resources](https://sjogrens.org/get-involved/world-sjogrens-day-july-23) and suggests various ways you can participate, to help raise awareness for [**Sjögren's disease**](https://achronicvoice.com/chronic-pain-bearable-not/).
- **World Drowning Prevention Day (25 July).** According to the World Health Organization (WHO), [drowning is one of the leading causes of death for young children](https://www.who.int/campaigns/world-drowning-prevention-day), and approximately 236,000 people drown every year 🙁
- **World Hepatitis Day (28 July).** According to the [World Hepatitis Day website](https://www.worldhepatitisday.org/), hepatitis is treatable, yet "viral hepatitis is the world's deadliest communicable disease", with 287 million people infected without even realising it. It is also the leading cause of liver cancer. Get multi-language resources on their website and help to raise awareness.
The following awareness campaigns span the entire month:
- [**Cord Blood Awareness Month**](https://learn.cordblood.com/CordBloodAwarenessMonth)**.** You've probably heard that 'cord blood saves lives'. This event helps to raise awareness amongst healthcare professionals and educate the public on the benefits of preserving stem cells found in cord blood and cord tissue of newborns.
- **Juvenile Arthritis Awareness Month.** Approximately 1 in 250 children live with [juvenile arthritis](https://www.iabhp.com/national-wellness-observance-calendar/juvenile-arthritis-awareness-month/) (JA), which can take an enormous toll on such young individuals. [Juvenile Spondyloarthritis](https://spondylitis.org/juvenile-spondyloarthritis-awareness-month/) (JSpA) month overlaps with it — help to raise awareness about these debilitating diseases that affect children.
- **National** [**Haemochromatosis Awareness**](https://irondisorders.org/july-is-national-hemochromatosis-screening-and-awareness-month/) **Month.** Did you know — "hemochromatosis kills more Americans than breast cancer and AIDS combined" (Iron Disorders Institute)? Learn more about this metabolic disorder that leads to iron overload in the body.
- **Sarcoma & Bone Cancer Awareness Month.** According to American Association for Cancer Research (AACR), "Sarcomas are a rare group of cancers in which malignant cells form in the bones or soft tissues of the body", which can affect both the young and old alike. [Learn more about the various types of sarcomas here](https://www.aacr.org/patients-caregivers/awareness-months/sarcoma-and-bone-cancer-awareness-month/), and help to raise awareness.
- **UV Awareness Month.** This campaign by the American Academy of Dermatology Association (AAD) aims to [raise awareness of the dangers of UV-exposure](https://www.aad.org/member/advocacy/promote/uv-awareness), which is the "root cause of most skin cancers".
## And Now... Presenting to You the 2026 July Writing Prompts!
### 1\. Updating
The July 2026 writing prompts would probably make for a great way for all of us to catch-up and update each other on what we've been up to in all areas of life. (And probably to b\*tch about new chronic illness problems, heh.) Alternatively, you could be [**updating your doctor**](https://achronicvoice.com/prepare-medical-appointment/) or loved one about an issue, [**updating a project or website**](https://achronicvoice.com/did-you-know-a-chronic-voice-is-10-years-old/), updating certain details or data — the list goes on!
### 2\. Recommitting
Has the trail for a commitment of yours gone cold, yet you'd like to see it revived? What would you like to recommit yourself to this July, or for the long-term? It could be related to work, school, relationships (familial/platonic/romantic/etc), a self-care routine, a diet or exercise plan, or anything else that you might find meaningful or helpful.
Read Related Posts:
- [What's It Like Going Back to School as an Adult with Disability and Chronic Illness](https://achronicvoice.com/going-back-to-school-as-an-adult-disability-chronic-illness/)
- [Why 'Easy' Part-Time Jobs are Not That Easy for Those with Chronic Illness](https://achronicvoice.com/part-time-jobs-not-easy-chronic-illness/)
- [Dating with Chronic Illness (and What I've Learned)](https://achronicvoice.com/dating-with-chronic-illness/)
- [How to Have a Healthy Relationship with Your Body (Even with Chronic Illness)](https://achronicvoice.com/healthy-relationship-with-body-chronic-illness/)
- [It is \*Always\* Possible to Make Time for What Matters Most](https://achronicvoice.com/make-time-what-matters-most/)
### 3\. Bracing
Is there an event that you're bracing for this month, such as a surgery, medical test results, or a difficult chat that's way past due? Alternatively, you might be experiencing invigorating weather, or adding tangible support to something that you're physically building.
### 4\. Documenting
Do you document or track anything for chronic illness management, such as your diet, sleep or [**heart rate**](https://achronicvoice.com/heart-rhythm-disorder/)? I think many people with chronic illness are fantastic project managers of their lives. Apart from that, you could also be [**documenting in the form of a journal**](https://achronicvoice.com/365-mindfulness-journaling-prompts-for-self-improvement/) or film (short or long-form), or documenting languages, data, notes, and many other types of observances — either formally or informally.
### 5\. Pampering
Are you pampering anyone in particular this July? Perhaps a loved one's birthday is coming up, or perhaps it's time for a small holiday, staycation, or 'me-time'. You could also be spoiling yourself in many different ways (both healthy and unhealthy 😛), or pampering someone else ([pets](https://achronicvoice.substack.com/p/the-way-my-dog-talisker-brings-me) and plants included!).
## Join Us in the 2026 Writing Prompts Here
Do you have thoughts to any of the writing prompts above? I truly hope to hear from you, and am eager to read what you have to say!
You can [**read** **past linkup entries here**](https://achronicvoice.com/diary-entries/) for inspiration or ideas on how or what to write about. Feel free to write in whatever style or form suits you, however. These writing prompts are meant to be a relaxing and cathartic community activity, after all. Happy writing and sharing!
You are invited to the **Inlinkz** link party!
[Click here to enter](https://fresh.inlinkz.com/p/38226648f440457286849091794d022e)
[Direct Link to Linkup (if widget isn't working)](https://fresh.inlinkz.com/p/38226648f440457286849091794d022e)
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Pin to Your Disability & Writing Group Boards to Help Spread the Word:
### Men with Fibromyalgia & the Unique Challenges They Face
URL: https://achronicvoice.com/men-with-fibromyalgia-unique-challenges/
Last updated: 2026-05-17T08:54:50.000Z
## Men with Fibromyalgia — Stephen White’s Story
*\*Note from* [***Sheryl of “A Chronic Voice”***](https://achronicvoice.com/about)*: I am happy to be able to share another male advocate’s story on the blog today (although obviously not happy that he is suffering from fibromyalgia). I truly believe that more male voices are needed when it comes to invisible illness, for the same reasons that Stephen White states within his own story below.*
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I/We are not doctors, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
Pin to Your Men with Fibromyalgia Boards:
### A Quick Look at What Fibromyalgia is
*According to Choy et al. (2010), the* [*mean time taken for a patient to be diagnosed with fibromyalgia*](https://link.springer.com/article/10.1186/1472-6963-10-102) *was approximately 6.5 years from the onset of symptoms. Within that study of 800 patients, only 16% were men. This makes it a double whammy for men with fibromyalgia, as there is a two-fold stigma attached to it. From a clinical perspective, a doctor might dismiss the pain, as “men do not ‘really’ get chronic illness or fibromyalgia”. Within a societal narrative, men are often expected to be “strong and stoic” — pain is thus, frequently suppressed voluntarily, yet reluctantly.*
### What has Helped Me Through Any New Diagnosis
*Personally, my own doctor has stated that I probably live with some 'baseline level of fibromyalgia', together with my autoimmune cocktail of* [***Antiphospholipid Syndrome***](https://achronicvoice.com/living-with-antiphospholipid-syndrome/)*,* [***Lupus***](https://achronicvoice.com/rock-bottom/)*,* [***Sjögren's disease***](https://achronicvoice.com/chronic-pain-bearable-not/)*, and many other chronic illnesses and disabilities. Two things that have helped me through each of these diagnoses are medical research, and support from other patients (*[***many who have become friends***](https://achronicvoice.com/panic-attacks-internet-friends/)*!). Meaning to say that knowledge paired with humanity becomes a powerful combination to help survive the relentlessness of chronic illnesses, and the pain they bring. If you are newly diagnosed with fibromyalgia, here are a few useful resources from official guidelines and websites:*
- [*American College Of Rheumatology (ACR) — Preliminary Diagnostic Criteria For Fibromyalgia*](https://www.rtmslondon.com/wp-content/uploads/2021/12/ACR-Fibromyalgia-Diagnostic-Criteria.pdf)
- [*The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity*](https://acrjournals.onlinelibrary.wiley.com/doi/abs/10.1002/acr.20140) *(Wolfe et al., 2010)*
- [*The Diagnosis Of Fibromyalgia Syndrome — UK Clinical Guidelines*](https://www.rcp.ac.uk/media/udlhnt1b/the-diagnosis-of-fibromyalgia-syndrome-guidelines%5F1%5F2%5F0.pdf) *(Royal College of Physicians \[RCP\], 2022)*
*For now, I shall shut up, and hand over the page to Stephen!*
Read Related Posts:
- [Antiphospholipid Syndrome Diagnosis: The A to Z Guide as a Patient](https://achronicvoice.com/antiphospholipid-syndrome-diagnosis-a-to-z-guide/)
- [“But That’s Normal for Me” (Why I Mistook Dengue Fever for a Lupus Flare)](https://achronicvoice.com/mistook-dengue-fever-lupus-flare/)
- [Why I Need to See More Than 10 Different Types of Doctors Regularly](https://achronicvoice.com/why-need-see-different-types-of-doctors/)
- [What It Feels Like to be Suddenly Disabled](https://achronicvoice.com/suddenly-disabled/)
- [My Second Brush with Death: A Broken Heart (Literally)](https://achronicvoice.com/death-broken-heart/)
## Young, in Pain, but Undiagnosed
Though undiagnosed at the time, I’ve experienced fibromyalgia since the age of 21\. It was January 2017 when my pain first started, just as I was returning to university after the [**Christmas holidays**](https://achronicvoice.com/survive-the-holidays-chronic-illness-disability-pain/). I had six months left of my integrated master’s degree in Geology, and I felt extremely anxious to return. The end of my degree was in sight, and my mind was on my thesis constantly. Would I find a good job at the end of this?
Pin to Your Chronic Pain & Young Adult Boards:
### The Chronic Pain that Brought Me to the A&E
In the beginning, I felt a strong, aching pain in my chest, and my [**heart rate was very high**](https://achronicvoice.com/heart-rhythm-disorder/). I kept a close eye on the pain over the next couple of days, but it didn’t settle down. Naturally, the preoccupation over my health fed into anxious thoughts. It may seem overblown, but I genuinely thought I could be having a heart attack, or that something was seriously wrong with me.
And so, I asked if my housemate could drive me to the hospital. When I arrived, I was quickly triaged at the A&E, before they conducted an ECG scan. I waited nervously for the results in a hospital bed. However, after only an hour or so, I was told by a kind doctor that they could find no abnormalities, and that I was otherwise healthy. I was discharged and sent home, whilst feeling very confused.
### The Addition of Chronic Fatigue
When I returned home from the hospital, I became more concerned about the chest pain over the next few days, as it hadn’t subsided. To my worry, fatigue began to accompany the pain, which then became chronic over weeks and months. This chronic fatigue was brutal. Within the span of a few weeks, I went from being a highly active 21-year-old, to barely being able to walk down the stairs. I was really scared, and had no idea what was happening to me.
Read Related Posts:
- [What's It Like Going Back to School as an Adult with Disability and Chronic Illness](https://achronicvoice.com/going-back-to-school-as-an-adult-disability-chronic-illness/)
- [A Page From a Sick Girl's Diary: Sometimes I Wish I was an Old Person](https://achronicvoice.com/sick-girls-diary-wish-old-person/)
- [What it Feels Like to be Refused Treatment by a Hospital’s A&E / ER](https://achronicvoice.com/refused-treatment-hospital/)
- [12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?)](https://achronicvoice.com/visible-evidence-invisible-illness/)
- [Best & Worst Part About Being Stuck at Home (From 32 People with Chronic Illness & Disability)](https://achronicvoice.com/stuck-at-home-with-chronic-illness-disability/)
## The Identity Crisis & Accommodations Needed at School
I had to take a break from my degree to recover, and was unable to complete an environmental module that I had been really looking forward to. I remember having a meeting with my supervisor and the course organiser, to discuss how I could finish my studies for the year. I felt so dejected. I didn’t want the attention that this illness brought, and I really struggled to verbalise what I was experiencing.
I also felt a visceral sense of imposter syndrome. Up until the start of 2017, I had always been able to cope with whatever life threw at me. I was young, otherwise healthy, and wanted so desperately to just push through this period of ill health. This didn’t feel like the ‘normal’ me, and I didn’t want to take time out. I just wanted to complete my course the same way as the rest of my coursemates did.
However, it soon became apparent that I would need accommodations. With the extra time and flexibility they granted, I managed to complete my degree. Looking back, I’m not sure how I would have been able to complete my course without those adjustments.
## My Brief Career in Exploration Geology
My health improved during the summer of my graduation, and I was gradually feeling more like my previous healthy self; only a few lingering pains could be felt here and there. I started a career in exploration geology, which was my dream job. It meant spending time in rural Türkiye, collecting metallurgical samples and mapping the geology of the area. There was a lot of travelling involved, but I was hoping the leftover pain would eventually resolve on its own.
My optimism didn’t quite go to plan. Months later, I had my first major pain flare-up. To cut a long story short, I had to quit my job as it was too physical for me.
## The Physical, Emotional & Mental Toll of the Chronic Pain as a Young Adult
I needed support, so I moved back in with my family. They were big life changes, and it felt like all my independence had disappeared in an instant. The aftermath of the flare-up was messy, to put it lightly. I lost a lot of confidence in myself, and felt so angry, confused, and heartbroken.
It was so hard not to compare myself to my peers at the time, who had now either started their own careers or had taken time out to go travelling. For years, I had planned a career built for the outdoors, either in mineral exploration or environmental geology. These plans seemed impossible after my flare-up. Experiencing chronic pain completely flipped my life on its head, and I had no idea how I was going to navigate it.
Read Related Posts:
- [Loss of Identity with Chronic Illness & The Plot Twist: Sharpened Self-Worth](https://achronicvoice.com/loss-of-identity-chronic-illness/)
- [Why 'Easy' Part-Time Jobs are Not That Easy for Those with Chronic Illness](https://achronicvoice.com/part-time-jobs-not-easy-chronic-illness/)
- [A Roundup of Biggest Pain Flare Triggers (from 40 People with Chronic Illness)](https://achronicvoice.com/pain-flare-triggers/)
- [Tips & Tools to Help Regain Independence with a Disability or Chronic Illness](https://achronicvoice.com/regain-independence-disability-chronic-illness/)
- [What Neverending Pain Reveals to You](https://achronicvoice.com/what-neverending-pain-reveals/)
## The Struggles with Communicating My Pain as a Young Man with Fibromyalgia
As a young man, I struggled to communicate that I was having a really hard time with my health. I had always been told “the world is your oyster” at that age, but in truth, I felt more trapped by my circumstances than anything else.
My health became a real rollercoaster ride throughout my twenties, with hospital appointments, surgeries, and work-life balance to navigate. For the past nine years, I’ve had to deal with chronic fatigue and nerve pain, as well as the ups and downs in mental health.
With all the issues I had presented to the doctors over the years, they still couldn’t give me a complete diagnosis, as they didn’t know what was fully going on. There was always a baseline of chronic pain and anxiety, but I found it difficult to explain my symptoms, because they would come and go, and varied in intensity.
Pin to Your Communication & Men's Health Boards:
## Finally Diagnosed with Fibromyalgia at 30
It wasn’t until I turned 30 last year that I was finally diagnosed with [fibromyalgia](https://www.abdn.ac.uk/iahs/academic/epidemiology/our-research/plain-language-summaries/fibromyalgia-healthcare/) — a condition that affects around 2.5 million people in the UK (University of Aberdeen, n.d.). The [National Health Service \[NHS\] (2022)](https://www.nhs.uk/conditions/fibromyalgia/) defines the condition as chronic, characterised by pain throughout the body. From my personal experience thus far, most people become concerned for me when they hear about my diagnosis.
Many of them are also surprised to see a male with a fibromyalgia diagnosis. This is because [fibromyalgia disproportionately affects women more than men](https://www.mdpi.com/2227-9032/11/2/223) (80 – 96% of cases are found in women) (Ruschak et al., 2023). As a person who lives with fibromyalgia, I will also add that there is still a real lack of understanding in the medical community about the condition in itself. In addition, research has typically concentrated on women, due to the low percentage of men with fibromyalgia (Ruschak et al., 2023).
I often wonder if the smaller proportion of men with fibromyalgia is solely due to genetics, or also to do with how men behave in general. For instance, men tend to be very silent when it comes to invisible disabilities, and also their mental health.
## Societal Expectations of Men
Societal norms typically dictate that men should be strong and be viewed as providers, usually in a familial context. It’s an expectation that I struggle to live up to; in fact, many of my male friends have told me that they feel the same way. ‘Masculine’ traits such as leadership, emotional detachment, and financial success have been drilled into us since we were little boys — by media, films, sports, culture — the list goes on.
With such an orchestrated backdrop, it’s no wonder that men struggle to open up when they face difficulties in life. When we do so, it feels like we’ve failed in some way, or that we have lost a part of our masculinity. For men with fibromyalgia, this sense of failure is compounded by everyday pain, which can lead to isolation, along with other mental health issues such as anxiety and depression (University of Aberdeen, n.d.).
Read Related Posts:
- [Clinical Depression: Diagnosed 10 Years Late](https://achronicvoice.com/depression-diagnosed-late/)
- [My Responses to “A Day in the Life” Linkup (What Does 'Normal' Even Mean?)](https://achronicvoice.com/a-day-in-the-life/)
- [There's No One Way to Live Your Life](https://achronicvoice.com/no-one-way-live-your-life/)
- [To Live with Chronic Illness is to Learn to Live with Maybes](https://achronicvoice.com/chronic-illness-maybes/)
- [Chronic Illness is Unpredictable, but You Don't Always Have to Fear the Unknown](https://achronicvoice.com/chronic-illness-unpredictable-dont-fear-unknown/)
## The Need to Limit Activities I Love, Due to Chronic Pain from Fibromyalgia
One activity that I’ve always loved is exercise. Whether that’s walking, hiking, or going to the gym. Throughout my teenage years and early twenties, I ran cross-country events for my school and county, and played football with my university coursemates. I had even run a half-marathon eight months before the onset of my pain. Exercise had always featured heavily in my life.
Now, I need to be more mindful when I exercise. I need to be careful not to push myself to my limits, as doing so can have a knock-on effect on my pain levels the following day. Throw in work, general life duties such as cleaning and cooking, and it quickly becomes tricky to balance mentally. This is especially true when I’m experiencing chronic pain.
## Men with Fibromyalgia & the Fitness and Achievement Clashes
We live in a culture focused on fitness and achievement, and that’s hard to live up to for men with fibromyalgia. I need to skip the gym on the days when I’m feeling really fatigued or in pain, which slows down any progress I have been building up in my workouts.
This is frustrating because I have fitness goals, but I’ve also learned to be more flexible with them due to my condition. I now know that if I am experiencing a flare-up, it’s more important that I look after my health, rather than “push through” the pain. Doing otherwise would only exacerbate the pain and exhaustion. Regardless, I still feel frustrated that it has to be this way.
Read Related Posts:
- [The Chronic Pain Cycle & How to Break It (Top Tips From an Occupational Therapist)](https://achronicvoice.com/break-chronic-pain-cycle-occupational-therapist-tips/)
- [Are You a Capable Person? What Does That Even Mean?](https://achronicvoice.com/capable-person-meaning/)
- [Is Yoga Accessible for People with Chronic Illness?](https://achronicvoice.com/accessible-yoga-chronic-illness/)
- [The Barriers That Throw Rocks into My Bucket List with Chronic Illness](https://achronicvoice.com/bucket-list-chronic-illness/)
- [Best Tips for Preventing a Pain Flare (from 40 People with Chronic Illness)](https://achronicvoice.com/prevent-pain-flare/)
## Learning to Shift My Mindset as a Young Man with Fibromyalgia
I miss playing football and long-distance running. It becomes [**easy to compare myself to others**](https://achronicvoice.com/dont-compare-life-destination-special/) who might be training for a marathon or reaching their gym goals, whilst I’m crashed out on the sofa. However, empathy and kindness are two traits that I’ve been working on for a while now. I have also been [**practising radical acceptance**](https://achronicvoice.com/self-acceptance-chronic-illness/). Just because I’ve had to take a week off from going to the gym, that doesn’t mean I’m any less capable. It’s helpful to remind myself of all my good qualities, too.
Speaking of “pushing through” pain, men with fibromyalgia can often feel that they’re not tough enough if they don’t force themselves to carry on, despite their struggles. Sometimes, I think to myself, “[**who am I trying to prove myself to**](https://achronicvoice.com/reminders-for-bad-days/)”? I’ve found this [**mindset shift**](https://achronicvoice.com/positive-thinker-without-unicorns-rainbows/) to be incredibly helpful for challenging conditioned thoughts and behaviours that I may have.
## I Want to Reach Out to Men Who Feel Stigmatised by Society
With all the challenges we face in our society today, I want to speak up on behalf of those with invisible disabilities, regardless of gender. However, I want to specifically reach out to men who feel stigmatised for speaking up about their struggles, and say that [**it’s okay to admit when you’re not feeling great**](https://achronicvoice.com/asking-for-help-life-skill/). It’s healthy to express your emotions, and [**isn’t a sign of weakness**](https://achronicvoice.com/you-dont-have-to-be-strong/).
When it comes to chronic pain, we wouldn’t expect someone with a broken leg to glide through the day or attend the office five days a week. The [**difference is that a broken leg is visible, whereas an invisible disability**](https://achronicvoice.com/rather-have-invisible-illness-or-disability/) isn’t.
Speaking objectively, visibility brings a unique challenge of its own. Obviously, no one can read anyone else’s mind to know what they’re going through, but empathy and kindness can go a long way when we interact with our fellow humans. This is especially relevant when it comes to healthcare and the workplace.
### The Changes I Believe We Need in Healthcare
In healthcare, we need to adopt a culture of trust when an individual presents long-term pain concerns. Just because the pain isn’t visible, it doesn’t mean it’s not real. I really do believe that western medicine needs to adapt to a changing world, and [**approach chronic pain with a holistic approach**](https://achronicvoice.com/dimensions-of-wellness-thrive-chronic-pain/) that is tailored to the individual. This means an approach that takes into consideration talking therapies, physical therapies and medications. A combination of all three is ideal, but should always be tailored to the individual.
This will take time and change is never easy, just like any facet within society. General practitioners and health professionals tend to only have 10 minutes per appointment; they are also seriously overworked in a pressurised system.
Speaking from my own experience as a man with fibromyalgia who has been through the medical system in the UK — a holistic approach has worked for me, and has helped me to live a much better life with an invisible disability. Unfortunately, I had to discover this approach by myself in my twenties. It took many years of self-study, reading, and pushing for referrals to relevant consultants. I don’t want others to go through what I did.
With the right foundations, I believe that it’s possible to change our outlook on chronic pain collectively as a society. Ideally, this should be guided by a top-down healthcare approach.
Read Related Posts:
- [Is My Doctor Right for Me?](https://achronicvoice.com/is-my-doctor-right-for-me/)
- [How to Prepare for a Medical Appointment in a Post-Pandemic World (4 Top Tips From a Doctor)](https://achronicvoice.com/prepare-medical-appointment/)
- [Why You Need a Good Therapist on Your Healthcare Team (Based on My Personal Experiences)](https://achronicvoice.com/why-need-good-therapist/)
- [Why it Feels Like Suicide is an Option When You Live with Chronic Illness or Disability](https://achronicvoice.com/suicide-chronic-illness/)
- [Chronic Illness is Expensive, but Here’s the Real Reason Why](https://achronicvoice.com/real-reason-why-chronic-illness-expensive/)
### The Need for Awareness Within Shared Spaces
Public and workplace environments also need more education in regards to accommodations, and how to adapt to individuals accordingly. [**It takes brave individuals to speak up**](https://achronicvoice.com/humility-advocacy/), and to educate others about the invisible conditions we live with. We can be a more inclusive society if we help those with invisible disabilities to feel more comfortable in our shared environments.
If you have any questions about chronic pain, fibromyalgia or are interested in learning more about my background, my DMs are always open.
All the best,
Stephen
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Read More Guest Posts Written by/About Men on the Blog:
- [“It's in My Blood”: Roy George — A Dramatic Life with a Short Bowel](https://achronicvoice.com/roy-george-dramatic-life-short-bowel/)
- [Rheumatoid Arthritis — the Biggest Street Fight of My Life](https://achronicvoice.com/rheumatoid-arthritis-fight-life/)
- [Liam's FND Story & How He Achieved His Dreams](https://achronicvoice.com/liams-fnd-story-how-he-achieved-his-dreams/)
- [How Art Benefits Children with Developmental Differences](https://achronicvoice.com/how-art-benefits-children-with-developmental-differences/)
- [Suffering with a Rare Disease, Isaacs' Syndrome, as Told from a Male Perspective](https://achronicvoice.com/rare-disease-isaacs-syndrome/)
- [3 Reasons Why I Don't Let Multiple Sclerosis Prevent Me from Living a Normal Life](https://achronicvoice.com/dont-let-multiple-sclerosis-prevent-normal-life/)
- [The Greatest Battle of My Life: How I Overcame Addiction](https://achronicvoice.com/overcame-addiction/)
- [What's it Like to be a Caregiver for a Chronically Ill Loved One (The Challenges & Rewards)](https://achronicvoice.com/caregiver-chronically-ill-loved-one/)
Pin to Your Fibromyalgia & Men's Health Boards:
**Contributor Bio:**
I’m 30 years old and live in London, UK. I love nature and try to get out of the city often! I play guitar and sing, previously in a band but I mostly play solo now. I love all things water sports — surfing, paddleboarding and swimming — so I tend to choose breaks by the sea. My background is in Geological Science, however, I’ve worked within the Climate Technology and Insurance industries since I graduated — either in carbon analysis or as a Natural Disaster Analyst. I’m passionate about learning more from climate change, but I also have a keen interest in genealogy and psychology — which both developed during my twenties. Researching family history has led to uncovering my Irish and Scottish roots, and I’m currently taking an Introduction to Counselling course to explore more about the potential routes to becoming a therapist. Here is my [blog](https://courageinchronicpain.wordpress.com/) and [Instagram](https://www.instagram.com/standwhite/) account.
### References:
- Choy, E., Perrot, S., Leon, T., Kaplan, J., Petersel, D., Ginovker, A., & Kramer, E. (2010). A patient survey of the impact of fibromyalgia and the journey to diagnosis. *BMC Health Services Research, 10*(1), 102\.
- National Health Services. (2022, October 12). *Fibromyalgia.*
- Royal College of Physicians. (2022). *The diagnosis of fibromyalgia syndrome: UK clinical guidelines.*
- Ruschak, I., Montesó-Curto, P., Rosselló, L., Aguilar Martín, C., Sánchez-Montesó, L., & Toussaint, L. (2023). Fibromyalgia syndrome pain in men and women: A scoping review. *Healthcare, 11*(2), 223\.
- University of Aberdeen. (n.d.). *UK healthcare services for people with fibromyalgia.* The Institute of Applied Health Sciences. Retrieved 9 May 2026, from
- Wolfe, F., Clauw, D. J., Fitzcharles, M.-A., Goldenberg, D. L., Katz, R. S., Mease, P., Russell, A. S., Russell, I. J., Winfield, J. B., & Yunus, M. B. (2010). The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. *Arthritis Care & Research, 62*(5), 600–610\.
### How Art Benefits Children with Developmental Differences
URL: https://achronicvoice.com/how-art-benefits-children-with-developmental-differences/
Last updated: 2026-02-13T14:17:51.000Z
*\*Note from Sheryl of A Chronic Voice:What is "art", really? A quick search yields a few similar dictionary definitions:*
> *"The* [***making of objects, images, music, etc***](https://achronicvoice.com/fun-things-to-do-while-recovering-from-surgery/)*. that are beautiful or that *express feelings*". (*[*Cambridge*](https://dictionary.cambridge.org/dictionary/english/art)*)*
> *"Skill *acquired* by experience, study, or observation". (*[*Merriam Webster*](https://www.merriam-webster.com/dictionary/art)*)*
*Many people tend to associate 'art' with Picasso, Rembrandt or some other museum-worthy painting. Either that or a starving artist with 'no real job'. Yet we often miss the other dimensions of art, even within dictionary definitions — such as being a medium for expression, as well as mastery of a skill. In that sense, *anything* within *any* field can be honed into an artform.*
*In this post, Martin Block shares more about art forms, and how they can benefit children with various developmental differences. Shall we dive in?* 🙂
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
Pin to Your Parenting & Development Differences Boards:
## The Beginnings of Connection, on Terms Your Child Understands
Sometimes a child hums before they speak. Sometimes they tap, fold, line things up. And it's not random. It's not empty behavior. It's not something to redirect. It's a sign — something’s working. Something’s flowing.
The arts don’t always arrive in brushes or songs. They arrive in patterns, gestures, sounds. Wherever that shows up, it’s worth following. Especially when language is slow to come. Especially when attention is scattered. That’s where the connection begins.
## Art Creates Safe Places Where Emotions Can Land
Kids who don’t speak much — or who echo — still feel everything. Strongly. Loudly. Sometimes all at once. And if there’s nowhere to put it? That’s when things explode. Or shut down. But give them shape. Give them color. A surface. A place to push. And it changes.
Programs that [layer creative expression into emotional development](https://www.tandfonline.com/doi/full/10.1080/17533015.2024.2319032) are proving that regulation doesn’t have to start with words (Birrell et al., 2025). It can start with hands. With movement. With space. The point isn’t to create something good. It’s to let the noise settle.
### Turn Mess Into Meaning Together as a Family
A lot of families start with a corner of a table. Then maybe a shelf. Then maybe a kitchen cupboard full of projects no one can throw out. Sometimes it’s not even about the child. Sometimes a parent’s the one who draws first. Sometimes it turns into something more.
There are now families building small businesses around their shared creativity — not for money, but for rhythm. If you’ve ever thought about [shaping your own passion for art](https://www.zenbusiness.com/art-business-ideas/) into something that supports connection and identity, this is the lane. It doesn’t have to scale. It just has to mean something.
Read Related Posts:
- [What's it Like to be the Mother of a Chronically Ill Child? (Precious Insights from My Own Mum)](https://achronicvoice.com/mother-of-chronically-ill-child/)
- [What’s it Like to be the Father of a Child with Chronic Illness? (Precious Insights from My Own Dad!)](https://achronicvoice.com/father-of-child-with-chronic-illness/)
- [What's it Like to be a Caregiver for a Chronically Ill Loved One (The Challenges & Rewards)](https://achronicvoice.com/caregiver-chronically-ill-loved-one/)
- [Liam's FND Story & How He Achieved His Dreams](https://achronicvoice.com/liams-fnd-story-how-he-achieved-his-dreams/)
- [The Savagery of Panic Attacks & The Saving Grace of Internet Friends](https://achronicvoice.com/panic-attacks-internet-friends/)
## Speech is Not the Only Form of Communication
Not every child who needs to speak can do it through the mouth — not right away, at least. But give them texture. Tools. A beat. A pattern to repeat. And suddenly, there’s language — just not the kind people expect.
It comes out in spirals. In rows. In tracing. In stopping halfway through and doing it all again. [Arts programs focused on children with speech or communication blocks](https://www.frontiersin.org/journals/child-and-adolescent-psychiatry/articles/10.3389/frcha.2024.1322860/full) show that meaning doesn’t need a sentence to be real (Léger-Goodes et al., 2024). It just needs a form.
## The Body Learns by Doing — Let Kids Play with Their Hands
Paint is messy. Clay is unpredictable. Collage sticks to everything. That’s the point. Because to do those things, the hands have to work together. The arms have to reach. The eyes have to track.
For children with developmental differences such as motor delays, this is training disguised as play. A lot of formal therapies miss this. They isolate the movement, forget the joy. But [art-based motor workshops](https://thevisionaryartworkshop.com/art-for-special-needs/) flip that. They let kids build strength without knowing they’re building anything at all. Which, ironically, is when the most happens.
## Transformation & Inclusion Through Art, Where Every Child Matters
You can be in the same room and still miss each other, especially when a child doesn’t follow back-and-forth the way others do. So instead of conversation, there’s shape. There’s rhythm. There’s making.
That’s where real inclusion shows up — not in policy, but in practice. It looks like a kid with one sound on loop building something next to another who speaks five languages. It looks like group art sessions that aren’t about skill, but about showing up. [UNICEF’s own reporting on arts-driven cultural inclusion initiatives](https://www.unicef.org/innocenti/media/10856/file/UNICEF-Innocenti-Disabilities-Arts-Culture-Report-2025.pdf) offers global examples. What do they have in common? No one’s expected to act “typical.”
> “These programmes can play a transformative role in promoting social inclusion by encouraging children to actively participate alongside one another. For children with disabilities in particular, these activities provide a space to build self-esteem, improve communication and foster a sense of belonging in group settings.” (UNICEF, 2025)
## The Gaps in the Education System for Children with Development Differences
Some schools still keep arts on Fridays — optional, ungraded, squeezed into the end of the week. Others have figured it out. That learning isn’t just input and recall. It’s rhythm. Sequence. Motion. Flow. And for neurodivergent kids, it’s often the only door that stays open.
International pushes for [arts-first learning models](https://www.unesco.org/en/articles/what-you-need-know-about-culture-and-arts-education) are changing what counts as intelligence. Kids who can’t hold a pencil “correctly” are composing. Kids who stim through dance are choreographing without knowing it. Schools are slow to shift. But families don’t have to wait.
Read Related Posts:
- [What's It Like Going Back to School as an Adult with Disability and Chronic Illness](https://achronicvoice.com/going-back-to-school-as-an-adult-disability-chronic-illness/)
- [“It's in My Blood”: Roy George — A Dramatic Life with a Short Bowel](https://achronicvoice.com/roy-george-dramatic-life-short-bowel/)
- [“It's in My Blood”: Katarina Zulak — Living Life Skillfully & Artistically with Chronic Illness](https://achronicvoice.com/katarina-zulak-living-artistically-chronic-illness/)
- [Coming Alive in the Winter Air (Pushing for Personal Changes & Group Advocacy)](https://achronicvoice.com/winter-advocacy/)
- [How to Use the 7 Dimensions of Wellness to Thrive with Chronic Pain](https://achronicvoice.com/dimensions-of-wellness-thrive-chronic-pain/)
### Filling in the Gaps with Initiatives & Communities
In many places, disabled artists don’t get gallery shows. Or press. Or awards. So they build their own rooms. Their own stages. Sometimes it’s digital. Sometimes it’s hyperlocal. Doesn’t matter. What matters is that there are now entire networks devoted to making space.
One example — [this hub for global arts initiatives](https://blackdisabledcreatives.com/resources/orgs/) — curates programs where disabled children, teens, adults can show their work, get support, and be part of a culture that sees them as contributors, not just participants. It’s not therapy. It's a community.
## Take the Time to Notice & Provide Validation
This isn’t about [**unlocking potential**](https://achronicvoice.com/next-level-life/). It’s about letting it run. Art doesn’t need to be framed to matter. A drawing doesn’t need to be praised to count. Not every moment needs to be labeled “progress.” [**Some things are just good**](https://achronicvoice.com/why-your-beauty-never-left-you/). Because they are. Because a child made them. Because a parent paused long enough to notice. That’s enough.
## Sign Up for My Free Newsletter
Be the first to get the latest post updates in your inbox, and unlock the comments section. You will also receive an e-book full of uplifting messages, quotes and illustrations as a token of appreciation!
[Browse more membership plans here](#/portal/), or [make a one-off donation](https://achronicvoice.com/#/portal/support) instead.
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Read Related Posts:
- [There's No One Way to Live Your Life](https://achronicvoice.com/no-one-way-live-your-life/)
- [Life is a Long Process of Becoming Into...](https://achronicvoice.com/life-is-a-long-process-of-becoming-into/)
- [Are You a Capable Person? What Does That Even Mean?](https://achronicvoice.com/capable-person-meaning/)
- [Uplifting Activities to Do While Recovering in Bed](https://achronicvoice.com/uplifting-activities-to-do-while-recovering-in-bed/)
- [Chronic Illness Quotes to Inspire, Motivate, Grieve, Hope & Laugh About](https://achronicvoice.com/chronic-illness-quotes/)
Pin to Your Children with Developmental Differences & Disabilities Boards:
### References:
- Birrell, L., Barrett, E., Oliver, E., Nguyen, A., Ewing, R., Anderson, M., & Teesson, M. (2025). The impact of arts-inclusive programs on young children’s mental health and wellbeing: A rapid review. *Arts & Health, 17*(3), 185–207.
- Léger-Goodes, T., Herba, C. M., Moula, Z., Mendrek, A., Hurtubise, K., Piché, J., Gilbert, M., Bernier, M., Simons, K., Bélanger, N., Smith, J., & Malboeuf-Hurtubise, C. (2024). Feasibility, acceptability, and perceived benefits of a creative arts intervention for elementary school children living with speech, language and communication disorders. *Frontiers in Child and Adolescent Psychiatry, 3*.
- UNICEF Innocenti – Global Office of Research and Foresight. (2025). *A systematic review on children with disabilities: Arts and culture for inclusion.* United Nations Children’s Fund.
**Contributor Bio:**
Martin Block is the co-founder of [Able Rise](https://ablerise.net/) and an advocate for digital accessibility and inclusive design. With a background in web development, he focuses on building practical tools that empower the disability community and bridge gaps in societal support. Through Able Rise, Martin aims to create compassionate, technology-driven solutions rooted in lived experience.
### Liam's FND Story & How He Achieved His Dreams
URL: https://achronicvoice.com/liams-fnd-story-how-he-achieved-his-dreams/
Last updated: 2026-05-17T09:14:42.000Z
## An Introduction to Liam and Functional Neurological Disorder
I am pleased to have Liam Virgo on the blog today — but not glad that he has to live with the poorly understood medical condition, Functional Neurological Disorder (FND), previously known as "conversion disorder".
*\*Disclaimer: This article is meant for educational purposes, and is based on the patient(s)' personal experiences. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
[Subscribe for More](#/portal/)
Pin to Your Functional Neurological Disorder & Rare Disease Boards:
### More About FND
[Functional Neurological Disorder](https://medlineplus.gov/ency/article/000954.htm) (FND) is a "condition in which there is a problem with how the brain receives and sends information to one or more parts of the body" ((National Library of Medicine \[NLM\], 2024). From moving to walking, speaking, and even feeling and thinking — the [impacts of FND](https://www.massgeneral.org/neurology/treatments-and-services/functional-neurological-disorder-basics) range far and wide within the human body (Massachusetts General Hospital, n.d.).
In addition, [FND can branch out into subtypes](https://www.sciencedirect.com/science/article/abs/pii/S1474442221004221), such as functional seizures and Functional Movement Disorder (FMD). FMD in itself can be further classified into different types based on diagnostic features, including dystonia, jerks, tremors, a disruption to gait and balance, limb weakness and/or other generic motor dysfunctions (Hallett et al., 2022).
All combined, this makes FND challenging to diagnose, with no one-size-fits-all treatment plan.
### What Liam Will be Sharing with Us Today
For this guest post, Liam will share his personal experiences with FND — from his initial diagnosis, to how he's living with it today. On a side note, I am happy to have another male voice on the blog, as I personally believe that there are not enough perspectives and resources by and for them out there. FND in itself predominantly affects females as well at 60 to 80% (Hallett et al., 2022).
Without further ado, let's read what Liam has to say below!
## My Name is Liam, and This is My FND Story
When I was a child, I acquired a debilitating chronic illness that would have a major impact on my life for years to come. I went from being a healthy child to one who couldn’t move or even speak. FND suddenly took my mobility and speech and placed me in a wheelchair, then caused me to become bedridden and locked inside my own mind and body.
My name is Liam, and I’ve been battling with FND since 2016, when I was 13 years old. This is my story which I’m pleased to be sharing with A Chronic Voice.
## The Beginning Signs & Symptoms of My FND
I personally had severe FND, and my symptoms were mainly in the form of paralysis, cognitive and speech problems. My physical and cognitive skills deteriorated to the point where I had all my abilities taken away from me.
Within a few days, I had lost my ability to walk and talk, and was rushed to hospital. The doctors were baffled by my mystery illness, and said that I had an unknown disorder. They even filmed my case for medical research for universities around the world. I had so many scans, tests and medical procedures, yet all the results came back as "normal".
I had to leave school as it wasn’t safe for me anymore, due to my sudden deterioration. I don’t remember the early days of my illness, and life before it is a blur.
Read Related Posts:
- [What It Feels Like to be Suddenly Disabled](https://achronicvoice.com/suddenly-disabled/)
- [Learn More About the Super Rare Disease — Esophageal Diverticulum](https://achronicvoice.com/rare-disease-esophageal-diverticulum/)
- [What's It Like Going Back to School as an Adult with Disability and Chronic Illness](https://achronicvoice.com/going-back-to-school-as-an-adult-disability-chronic-illness/)
- [So This is What a Tonic Clonic Seizure Feels Like](https://achronicvoice.com/tonic-clonic-seizure/)
- [What it Feels Like to be Refused Treatment by a Hospital’s A&E / ER](https://achronicvoice.com/refused-treatment-hospital/)
## My Functional Neurological Disorder Diagnosis
After spending 4 months in the hospital, I was finally diagnosed with severe Functional Neurological Disorder. I had at least 20 [**health professionals involved in my care from across different specialties**](https://achronicvoice.com/why-need-see-different-types-of-doctors/).
For 6 months my mind was blank, and I didn’t know what or who anything was. As my brain's function improved slowly, it was then that I could understand what was happening to me.
### Another Blow from FND, Just as I was Recovering
In the midst of regaining function, FND struck again, causing me to lose the ability to sit up. I was given different types of wheelchairs, but nothing was suitable due to my deteriorating posture.
It got to the stage where my body couldn't tolerate being on any form of equipment apart from my hospital bed. I was bedridden for 3 years and I felt trapped inside my own body, and uncertain about my future.
I wasn't able to talk for a whole year either, but slowly began to regain my voice with determination, and also with the support of my loved ones. The process was painfully slow, but I was determined. With the help of speech and language therapists, slowly but surely, my voice recovered fully.
## My FND Recovery Process & The Dream That Motivated My Progress
During the time when I was bedridden, I found comfort in a few things, one of which was London. I saw London on the TV one day while I was bed bound, and thought that I would love to visit it one day. Severe FND meant that I wasn't well enough to go, but it became a dream of mine regardless.
The [CAMHS](https://www.england.nhs.uk/mental-health/cyp/children-and-adolescent-mental-health-service-inpatient-services/) (Child and Adolescent Mental Health Service) and a specialist team from [Great Ormond Street Hospital](https://www.gosh.nhs.uk/) created a progress chart that would help motivate me to achieve my dreams. I would get a point on the chart whenever I moved an arm or finger, which meant that I was one step closer to achieving my wishes.
Read Related Posts:
- [Physiotherapy After Knee Operation](https://achronicvoice.com/physiotherapy-after-knee-operation/)
- [How Many Times Can You Hit Rock Bottom with Chronic Illness?](https://achronicvoice.com/rock-bottom/)
- [Grieving the Life That I Will Never Have (Due to Chronic Illness & Disability)](https://achronicvoice.com/grieving-the-life-i-will-never-have-chronic-illness-disability/)
- [Top Tips for Travelling with Chronic Illness & Disability (From a Girl Who Loves to Travel)](https://achronicvoice.com/travelling-with-chronic-illness-disability/)
- [The Road to Recovery is the Longest of Them All](https://achronicvoice.com/road-to-recovery-longest/)
### Learning How to Sit Up on My Own Again
After 3 long years, my body felt less stiff as my FND started to improve. I had to relearn how to move my arms and managed to do so within a few months, which was a huge milestone for me.
Next, I had to learn how to sit up on my own again. One morning, when my back didn't feel as "locked" and stiff, I was transferred to the specialist [tilt-in-space wheelchair](https://onlinelibrary.wiley.com/doi/10.1155/2019/4027976). This is a special wheelchair where the seat and backrest can be [adjusted to different angles](https://www.nature.com/articles/sc2010194), and is used for many different rehabilitative purposes (Giesbrecht et al., 2011; Zemp et al., 2019). Even though I could only lift my head slightly above my knees, it was a huge achievement.
I was transferred to the chair every day for 10 minutes, which was the maximum amount of time my body could tolerate sitting. I would then need to lie down in bed again. However, just being able to sit in the chair for 10 minutes was another huge milestone. Before that, I wasn't able to tolerate sitting on anything for even one second. Slowly but surely, my body regained strength, and I could tolerate sitting in an upright position after many months.
## My First Taste of Freedom Again After FND Rehabilitation
At this juncture, I was given a new wheelchair. It was a tilt-in-space one that had self-propelling wheels, so I could wheel myself if I was able to. My first outing in *years* was to go and collect it from the hospital. It was only the hospital, but to me, it felt like a whole new world ready to explore.
I tasted freedom at last, after having been trapped inside my own body and bedridden for so long. This was now my new life — learning to live with FND. I could no longer remember what the world was like before my FND diagnosis, but I now looked at it differently through the lens of a wheelchair user.
### Achieving My Dream of Visiting London
When I was well enough, I achieved my dream of visiting London. It is my favourite place, and I’ve been back many times since. It was everything as I had seen, heard and imagined it to be. I love everything about the city — all the buildings, statues, views and more. My next wish is to visit Cyprus.
## A New Chapter with FND — The Start of My Advocacy Work
9 years on from my life-changing illness, I’m learning to walk again. I still have difficult days, but I’m determined to raise awareness about Functional Neurological Disorder and not let it define me.
I'm now committed to living my life to the fullest despite my chronic illness. I've discovered a new purpose in raising awareness about FND. I'm grateful for the progress I've made and excited for what’s to come. I'm not letting my FND define me — I'm living life on my own terms.
Despite the harrowing experiences with severe FND where it took my voice, body and freedom, I found the strength and resilience to fight through it from somewhere within. It’s been a long, painful and isolating journey, but I’m learning to live with FND — and I’m determined to never give up hope for the future. I believe that even when all feels lost, you can still find a way forward. If you’re living with FND, know that you are not alone.
Read Related Posts:
- [Useful Things to Do While on Bed Rest After Surgery: Education, Advocacy & Volunteering](https://achronicvoice.com/useful-things-to-do-while-on-bed-rest/)
- [Loss of Identity with Chronic Illness & The Plot Twist: Sharpened Self-Worth](https://achronicvoice.com/loss-of-identity-chronic-illness/)
- [The Barriers That Throw Rocks into My Bucket List with Chronic Illness](https://achronicvoice.com/bucket-list-chronic-illness/)
- [I May be Chronically Ill, but I'm Also Chronically Resilient](https://achronicvoice.com/chronically-ill-resilient/)
- [Sometimes, Physical Pain Isn’t the Worst Part About Chronic Illness](https://achronicvoice.com/worst-part-about-chronic-illness/)
## Sign Up for My Free Newsletter
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[Browse more membership plans here](#/portal/), or [make a one-off donation](https://achronicvoice.com/#/portal/support) instead.
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Pin to Your Functional Neurological Disorder (FND) & Chronic Illness Boards:
**Contributor Bio:**
I'm Liam Virgo, and my life took an unexpected turn in 2016 when I was just 13 years old. I was diagnosed with severe Functional Neurological Disorder and became bedridden. It's been a challenging journey, but I'm determined to live life to the fullest. My condition may have taken away my mobility and speech, but now it's also given me a voice to speak up about FND. Connect with me on [Instagram](https://www.instagram.com/liamloveslondon).
### References:
- MedLine Plus. (20 October, 2024.) *Functional neurological disorder.*
- Giesbrecht, E. M., Ethans, K. D., & Staley, D. (2011). Measuring the effect of incremental angles of wheelchair tilt on interface pressure among individuals with spinal cord injury. *Spinal Cord, 49*(7), 827–831\. https://doi.org/10.1038/sc.2010.194
- Hallett, M., Aybek, S., Dworetzky, B. A., McWhirter, L., Staab, J. P., & Stone, J. (2022). Functional neurological disorder: New subtypes and shared mechanisms. *The Lancet Neurology, 21*(6), 537–550\. https://doi.org/10.1016/S1474-4422(21)00422-1
- Massachusetts General Hospital. (n.d.). *Basics of functional neurological disorder (FND)*. Retrieved 2 December 2025, from https://www.massgeneral.org/neurology/treatments-and-services/functional-neurological-disorder-basics
- National Library of Medicine. (2024, October 20). *Functional neurological disorder*. MedlinePlus. https://medlineplus.gov/ency/article/000954.htm
- Zemp, R., Rhiner, J., Plüss, S., Togni, R., Plock, J. A., & Taylor, W. R. (2019). Wheelchair tilt-in-space and recline functions: Influence on sitting interface pressure and ischial blood flow in an elderly population. *BioMed Research International, 2019*(1), 4027976\. https://doi.org/10.1155/2019/4027976
### Did You Know... A Chronic Voice is 10 Years Old?
URL: https://achronicvoice.com/did-you-know-a-chronic-voice-is-10-years-old/
Last updated: 2026-05-20T16:42:30.000Z
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*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
Personally, I'm surprised that these old website bones are still holding up, what with the advancements in technology and gaudy new AI trinkets!
Regardless, I wanted to migrate the website to another platform for a few reasons:
- **I'm tired of updating WordPress plugins.** If you own a WordPress website too, then you know that the constant updates are a drag, especially since they break your website half (or more) of the time. Yet, they're crucial for security reasons.
- **I didn't want to pay for a gazillion 'essential' WordPress plugins to be viable SEO-wise.** On top of that, I also pay for plugins to keep the site secure, and free from malware and spam. It all adds up to quite a bit, as you can imagine — both in time and money.
- **Simply because I got bored of the design, and have always wanted a magazine-feel to the site!** So there we have it 🙂
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## So Where Did "A Chronic Voice" Move to?
The website is now hosted on Ghost Pro, which is perfect for a small blog like mine. The migration process was *a lot* more work than I had anticipated, as the import function in Ghost is pretty barebones.
## What I Did and How it Benefits You, Too!
I did a mega spring cleaning of ***all* *300+ posts*** plus pages on the website. You don't need to be a web expert or writer to know that what was written 10 years ago is probably cringe-worthy by now, both in terms of technicality and writing style.
What this means for you — many posts from the archives have been updated with new (hopefully wiser 😆) perspectives. So even if you've read a post before, you can read it again 😉
### A Walk Down Memory Lane
I had originally wanted to delete all my monthly writing prompt entries as well, as they don't provide much value in terms of SEO. But as I was going through them, I realised that they are in fact, a treasure trove of memories. Many of the posts brought a smile or tinge of sadness to my face.
I have housed them all under a new [**‘Diary Entries’ page here**](https://achronicvoice.com/tag/diary-entries/). When you get tired of reading 'science-y' articles, perhaps you can break the monotony up with more freeform, emotion-filled articles 🙂
### Other Changes That Will Affect Or Benefit You
- **Website is *way* faster now.** I don't even need to check the time to compare the load speeds. In Ghost, the pages load up in a flash! So that means a more seamless reading experience for you.
- **Newsletter platform and membership merge.** I was previously using MailChimp as my newsletter platform. Since Ghost has a newsletter feature and membership options too, I decided to merge the two for a more integrated experience. If you're familiar with SubStack, the model is very similar.
- **No change on your end.** Except perhaps for the newsletter layout! As a current newsletter subscriber, you are automatically considered a 'free member' of the website 🙂 All current public content is free for reading always.
- **Comments section.** This is now restricted to members only (including free members), as I received way too much spam previously on WordPress. I also wanted it to move towards a more community feel.
- **Should you wish to unsubscribe at any time**, you can click on the 'unsubscribe' link at the end of this post as well.
Thank you for reading this lengthy welcome message, and why not [**take a peek at the new website here**](https://achronicvoice.com/)? 🙂 I wish you a lovely week ahead and thank you for being a part of this community!
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### Why I Need to See More Than 10 Different Types of Doctors Regularly
URL: https://achronicvoice.com/why-need-see-different-types-of-doctors/
Last updated: 2026-05-04T15:47:48.000Z
## From 10 to 15 Different Types of Doctors on My Healthcare Team
I was reading this post the other day, and realised that I had originally written it 10 years ago. Back then, I was 'only' seeing around 10 different types of doctors on a regular basis.
Now, the body count has increased to 15 - which excludes other healthcare professionals who aren't technically considered doctors, but still important players on my medical team (such as my dietitian and physiotherapist). Then there's also the other medical specialists I see on a *less* frequent basis. Needless to say, I had to update the post.
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. Whilst I have done my best to be meticulous in research, *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
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## The Complexity of Autoimmune Diseases
[Autoimmune diseases](https://www.autoimmuneinstitute.org/understanding-autoimmune-disease/) are a complex beast (Global Autoimmune Institute \[GAI\], n.d.); like a hydra with poisonous heads that have the ability to regenerate and multiply as comorbidities. No two patients are the same; we share the same illness only by namesake.
There is no go-to medication to treat them, such as antibiotics for a common flu. Every patient's cocktail of drugs is obtained from years of trial and error, and also with much blood, sweat and tears. More often than not, such patients need to see many different types of doctors, due to the [systemic nature of many autoimmune diseases](https://onlinelibrary.wiley.com/doi/10.1155/2013/728574) (Shi et al., 2013). Personally, I need to see at least 15 different types of doctors on a regular basis.
## Is There Really a Need to See *That* Many Different Types of Doctors?
As you well may know, the body operates as one unit. A dysfunction in one system can impact another, whether as a direct or indirect consequence. For instance, [many autoimmune diseases manifest as problems within the oral cavity first](https://onlinelibrary.wiley.com/doi/10.1155/2018/6061825) (Saccucci et al., 2018), which may seem totally unrelated at first glance.
Various medical departments contribute their expertise to manage these symptoms as a whole. Following up with only one doctor is usually insufficient, even if they're knowledgeable within their specialty.
So for those who are wondering why we're scurrying off for *yet another* appointment (didn't she just see her doctor last week?!), or were curious as to what purpose each different type of doctor serves, here's a little peek into our lives.
## 1\. Rheumatologist - My Most Important Doctor
Out of all the different types of doctors, my [rheumatologist](https://rheumatology.org/rheumatologist) (American College of Rheumatology \[ACR\], n.d.) is hands down the most important specialist on my healthcare team. You probably have a go to primary care physician (PCP)/general practitioner (GP) whom you visit whenever you feel ill. For me, the equivalent is my rheumatologist.
This is because [**I have so many autoimmune diseases and comorbidities**](https://achronicvoice.com/about/) that are beyond what a GP can help me with. In fact, I hardly visit GPs anymore unless I know what I need from them specifically, such as medications for a cough. Otherwise, they usually just direct me to the nearest A&E out of fear.
### What My Rheumatologist Helps Me with Specifically
My rheumatologist takes care of my autoimmune conditions together with me, namely Systemic Lupus Erythematosus (Lupus), Sjögren's disease and Antiphospholipid Syndrome. I see him the most frequently out of all my doctors, as we need to ensure that both the symptoms of these diseases, and also the medication side effects are all under control. Or as close to 'under control' as we can get them to be.
He is also the doctor who refers me to other specialists, should he suspect the involvement of a particular organ, or detects other problems. Perhaps he heard some unusual sounds gurgling in my heart, or found a mysterious lump on my foot. He then refers me to a cardiologist or foot surgeon respectively for further investigation.
Read Related Posts:
- [The Annoying Thing About Living with Antiphospholipid Syndrome (My Personal Experiences)](https://achronicvoice.com/living-with-antiphospholipid-syndrome/)
- [How Does Antiphospholipid Syndrome Affect The Body? (Beyond the Blood to Major Organs)](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body/)
- [“But That’s Normal for Me” (Why I Mistook Dengue Fever for a Lupus Flare)](https://achronicvoice.com/mistook-dengue-fever-lupus-flare/)
- [Bloody Mutations into Lupus](https://achronicvoice.com/rock-bottom/)
- [12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?)](https://achronicvoice.com/visible-evidence-invisible-illness/)
## 2\. Cardiologist (Heart Doctor)
[Cardiologists](https://my.clevelandclinic.org/health/articles/21983-cardiologist) are doctors who take care of the heart and the blood vessels related to it. They treat a variety of diseases such as heart attacks, atherosclerosis, heart valve problems and more (Cleveland Clinic, 2024a).
My rheumatologist first referred me to a cardiologist after he detected strange sounds coming from my heart about 15 years ago. The cardiologist then ordered an [echocardiogram](http://www.mayoclinic.org/tests-procedures/echocardiogram/basics/definition/prc-20013918), which is an ultrasound test for the heart (Mayo Clinic, 2024). We learned that the [mitral valve in my heart had prolapsed](https://www.nhlbi.nih.gov/health-topics/mitral-valve-prolapse), and that the sounds were a result of blood leaking back into my lungs (National Heart, Lung, and Blood Institute \[NHLBI\], 2022).
[**I eventually needed to get a mitral valve repair (MVR) done at Cleveland Clinic**](https://achronicvoice.com/death-broken-heart/) in the U.S., as I was getting progressively breathless over a year. The repair was done using an [annuloplasty band](https://my.clevelandclinic.org/health/treatments/22224-annuloplasty) that's made of gore-tex material (Cleveland Clinic, 2021). I've had to see a cardiologist on a regular basis ever since, to monitor for any changes or new problems with my heart. (P.s. 15 years later, I now have [mitral valve stenosis](https://my.clevelandclinic.org/health/diseases/21903-mitral-valve-stenosis) (Cleveland Clinic, 2023b), which will eventually require an open heart surgery).
## 3\. Heart Rhythm Specialist
Yes, I see two different types of doctors for my heart, who look after different aspects of the same organ. You may be surprised at how fine-grained all the different medical specialties can be!
And no, heart rhythms are not something my cardiologist knows too much about. It isn't because she is stupid; they are just a whole new ball game from heart valves. I guess you could view the cardiologist as a mechanic, and the heart rhythm specialist as an electrician. It is like the difference between the science of measuring electric currents, versus operation of the actual machine itself.
The mitral valve prolapse (MVP) I had probably led to the [heart rhythm disorder/arrhythmia](https://www.mayoclinic.org/diseases-conditions/heart-arrhythmia/symptoms-causes/syc-20350668) (Mayo Clinic, 2023). [**I have something called paroxysmal supraventricular tachycardia**](https://achronicvoice.com/heart-rhythm-disorder/) (PSVT), which causes my heartbeat to accelerate out of control when it falls into a wrong loop.
## 4\. Neurologist (Brain Doctor)
About a year after I was first diagnosed with Lupus, I was diagnosed with [epilepsy](https://www.epilepsy.com/what-is-epilepsy), which is a neurological disorder that causes abnormalities in brain waves, which then trigger seizures (Epilepsy Foundation, n.d.). I was officially diagnosed with epilepsy after undergoing an [electroencephalogram](https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/electroencephalogram-eeg) (EEG) test, which measures brain waves (Johns Hopkins Medicine, 2024).
Whilst the [neurologist](https://healthcare.utah.edu/neurosciences/neurology/neurologist) (University of Utah Health, 2021) claims that my epilepsy isn't related to my other chronic illnesses, I personally think that all my illnesses are connected or impact each other in one way or another. Out of all the medical specialisations, I have found neurology to require the most guess work as well, which just goes to show how much we still don't know about this super important organ.
What usually happens during my appointments with my neurologist is that I update him on my latest brain-related symptoms. This might be extra brain fog, [visual field auras](https://pmc.ncbi.nlm.nih.gov/articles/PMC4519021/) (Spencer, 2015), giddy spells brought about by buzzing sounds, or something else.
He then makes a conclusion based on my word, and adjusts my medications as needed. From there it is a waiting game until the next appointment, and the next. You need to be incident-free for at least two years before medications can be reduced, or subsequently stopped. I have yet to be off my medications after 15 years, as I still experience visual field auras on a weekly basis.
Read Related Posts:
- [So This is What a Tonic Clonic Seizure Feels Like](https://achronicvoice.com/tonic-clonic-seizure/)
- [5 Things You Should Know About My Epilepsy (It’s More Than Just Seizures)](https://achronicvoice.com/epilepsy-more-than-just-seizures/)
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## 5\. Psychiatrist (Mental Health Specialist)
I first started seeing a [psychiatrist](https://www.psychiatry.org/patients-families/what-is-psychiatry) (American Psychiatric Association, 2023) after I begged my doctor to refer me to one about a decade ago. [**My steroid medications give me anxiety**](https://achronicvoice.com/high-dose-steroids/), but for the most part I just bore with it. I reached a breaking point when I caught tuberculosis (TB) however, as they had to double my steroid dose due to interactions with the TB meds.
The 30 pills I was taking every day wreaked unspeakable havoc on my mind and body. It also worsened my heart rhythm disorder, so I had to rush to the A&E every few days. I hardly saw anyone except hospital and medical staff for a year.
[**I was diagnosed with clinical depression and anxiety**](https://achronicvoice.com/depression-diagnosed-late/) by the psychiatrist, which stemmed from both the TB and long-term steroid usage. I believe the chronic pain I experienced over the years was starting to take a heavy mental toll, too. She started me on an antidepressants which I need to take on a daily basis. She also gave me some 'emergency medications' for [**acute bouts of panic attacks**](https://achronicvoice.com/panic-attacks-internet-friends/).
### More on How the Psychiatrist has Helped Me
If you live with chronic pain and have been wondering if you should see a psychiatrist (or another mental health professional) or not, the answer from me is a resounding "yes". Before I was put on antidepressants, I had no idea how out-of-whack my brain was, and that there were actually solutions. Whilst the medications do not remove the depression, anxiety or pain entirely, I have managed to return to a functional level because of them.
I actually don't see the mental health problems going away anytime soon, so I will need to see my psychiatrist regularly, too. In addition, she works in tandem with my neurologist, as some of the medications used can overlap with those for epilepsy.
## 6\. Psychologist (Another Type of Mental Health Specialist)
Different states and countries have [different requirements to be a clinical psychologist](https://www.psychologytoday.com/sg/blog/why-family-matters/201904/do-you-need-doctorate-be-clinical-psychologist) (Browne & Smith, 2019), so I'm just going to include them here on the list of different types of doctors I see.
Even though I was seeing a psychiatrist, I was curious as to what the difference was as compared to a [psychologist](https://www.apa.org/education-career/guide/science) (American Psychological Association, 2013). I wanted to know which specialty was more suited to my needs. What I learned instead is that a psychiatrist and psychologist have very different skill sets. Whilst they both deal with mental health issues, their approach and scope is very different.
I came to realise that I needed both a psychologist and psychiatrist on my healthcare team for that period of time. The psychiatric medications I was on helped to staunch the so-called 'mental wounds and infections', whereas the counseling sessions were the balm that soothed it, and aided with recovery.
[I found the counseling sessions so helpful](https://achronicvoice.substack.com/p/my-inner-child-and-the-angry-girl) that I continued to see my psychologist on a monthly basis for quite some time, even after she told me that I didn't need her help anymore. Whilst I haven't seen a psychologist in years, I might be booking an appointment with a new one again soon. A myriad of new chronic illnesses and disabilities have pushed me to a new breaking point, one which I am having trouble coping with on all levels - physical, mental and emotional.
Read Related Posts:
- [Is Seeking Help for Your Mental Health Worth It?](https://achronicvoice.com/mental-health-worth-it/)
- [Depression After Knee Surgery & How to Cope](https://achronicvoice.com/depression-after-knee-surgery/)
- [Give Your Best Anyway, Even When You’re Feeling Depressed](https://achronicvoice.com/give-your-best-even-when-feeling-depressed/)
- [Interview on ‘The Uninvisible Pod’: What I’ve Learned From Living with Chronic Illness for 20 Years](https://achronicvoice.com/interview-uninvisible-pod/)
- [How to Use the 7 Dimensions of Wellness to Thrive with Chronic Pain](https://achronicvoice.com/dimensions-of-wellness-thrive-chronic-pain/)
## 7\. Gynaecologist (for General Women's Health)
I truly wish that I were seeing a gynaecologist for pregnancy reasons, but unfortunately, it's because [**I've had two deadly ovarian cyst ruptures**](https://achronicvoice.com/refused-treatment-hospital/), no thanks to the medications I take for Antiphospholipid Syndrome. I met my current gynaecologist - who is a high-risk gynaecologist - in the hospital ward, after one of these near-death episodes.
Now, I have a birth control implant in my arm to prevent further episodes. These need to be changed only every 3 years, but I do see her more frequently than that as she also does my PAP smear and other tests related to women's health.
## 8\. Gynaecologic Oncologist (Cancer Specialist for Women's Health)
I was going for regular check ups with another [gynaecologist](http://www.gynaecologist.sg/) (Gynaecologist Singapore, n.d.) previously, and had two [dilation and curettage (D&C) procedures](https://www.ncbi.nlm.nih.gov/books/NBK568791/) (Cooper & Menefee, 2023) done by her. (Needless to say, the jobs were poorly done, so I am seeing the other gynaecologist mentioned above instead now.)
Anyway, she sent me to a [gynaecologic cancer specialist](https://my.clevelandclinic.org/departments/obgyn-womens-health/depts/gynecologic-oncology) (Cleveland Clinic, n.d.), after we discovered two different types of precancerous cells that had spread all over my female reproductive system. It was critical to get checked asap as I was on immunosuppressants, meaning that the cells could spread more easily as compared to a healthy person.
The gynaecologic oncologist proceeded to cauterise these precancerous cells - both [in my cervix](https://www.cancer.gov/publications/dictionaries/cancer-terms/def/cin-3?redirect=true) (National Cancer Institute \[NCI\], n.d.), and [on the surface of my skin](https://www.cancerresearchuk.org/about-cancer/vulval-cancer/stages-types-grades/stages-grades) (Cancer Research UK, 2023). I still need to follow up with him on a fairly regular basis, to ensure that these precancerous cells are not making a comeback.
On a side note, the original advice from my previous gynaecologist was to cut out my entire cervix. I was strongly against this, but am grateful that she was willing to put me in contact with someone else still. Bottom line is - always seek a second opinion before doing anything drastic. Different doctors even within the same specialty can have pretty extreme opinions; find one whom your research and gut instinct sits well with.
## 9\. Ophthalmologist (Eye Doctor)
[Ophthalmologists](https://www.aao.org/eye-health/tips-prevention/what-is-ophthalmologist) are medical doctors who "specialize in eye and vision care". They diagnose and treat various eye diseases and vision disorders, and also perform eye surgery if needed (Churchill & Gudgel, 2025).
I need to see an ophthalmologist on a yearly basis, as the medications I take to control the Lupus and Sjögren's can cause blindness, especially [hydroxychloroquine](https://www.aao.org/eyenet/article/hydroxychloroquine-induced-retinal-toxicity?june-2011). The medications can also lead to other eye problems such as cataracts and visual field defects (Hansen & Schuman, 2011).
I also have this "blind spot" in my left eye, which happened after the [**pulmonary embolism and multiple DVTs episode I had**](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/) when I was 17\. Whilst the ophthalmologist asks me every year if the blind spot is still there, they have yet to identify a problem within the eye itself, which leads me to believe that it is an injury within the brain of some sort.
They [dilate your pupils with some eye drops](https://aapos.org/browse/glossary/entry?GlossaryKey=37182552-8081-4f19-91a5-ee34f973bfdf) during these eye checks so that they can examine them properly (American Association for Pediatric Ophthalmology & Strabismus \[AAPOS\], 2023). It is impossible to go back to work for up to 6 hours after even if I wanted to, as everything on my screen becomes too bright and fuzzy.
## 10\. Dentist
### Salivary Gland Issues with Sjögren's Disease
Whilst we should all see our [dentists](https://ncrdscb.ada.org/recognized-dental-specialties) on a regular basis (National Commission on Recognition of Dental Specialties and Certifying Boards \[NCRDSCB\], n.d.), it is extra important for those of us with [Sjögren's disease](https://www.niams.nih.gov/health-topics/sjogrens-disease), as our salivary glands can dry out (National Institute of Arthritis and Musculoskeletal and Skin Diseases \[NIAMS\], 2024).
Apart from its role in lubrication and breaking food particles down, [natural saliva](https://pmc.ncbi.nlm.nih.gov/articles/PMC3312700/) also contains certain enzymes that has anti-infective properties (Tiwari, 2011). A dry mouth can lead to bacterial or viral infections, which then leads to gum or tooth decay if left untreated.
During bad flares from Sjögren's disease, I need to constantly rinse my mouth with [Oral 7](https://www.oral7.com/) moisturising mouthwash. I also smear the Oral 7 mouth gel all over the insides of my mouth before sleeping, which acts as a protective coating in place of natural saliva. It also lends brief relief from the discomfort of dryness, which can be [**more painful than you would imagine**](https://achronicvoice.com/chronic-pain-bearable-not/).
### TMJ Disorder & Sleep Bruxism Issues
Apart from reasons related to Sjögren's disease, I also need to see my dentist for [TMJ disorder and sleep bruxism](https://nourishdentalcare.com/bruxism-and-obstructive-sleep-apnoea-neuropathic-pain-case-study-14/) (teeth grinding) issues (Nourish Dental Sleep & TMJ Care \[NDC\], 2025).
I have managed to break my molar tooth from bruxism before, and [broke it again recently whilst chewing on some Christmas ham](https://achronicvoice.substack.com/p/broken-tooth-christmas-eve). Because of these issues, I had to have a customised mouth guard made by my dentist. I need to wear this to sleep every night to prevent yet more damage to my teeth. Fun times.
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## 11\. Orthopaedic Surgeon (Sports Medicine)
I don't have to explain to you by now, but there are also a ton of specialties under [orthopaedics](https://www.abos.org/about/what-is-orthopaedics/) (American Board of Orthopaedic Surgery \[ABOS\], n.d.). As a whole, they take care of the [musculoskeletal system](https://www.msdmanuals.com/home/bone-joint-and-muscle-disorders/biology-of-the-musculoskeletal-system/introduction-to-the-biology-of-the-musculoskeletal-system), which includes muscles, bones, tendons, ligaments, joints and other bits and pieces (Villa-Forte, 2025).
Orthopaedic surgeons tend to specialise on one particular area of the body; for example, the hand versus the feet or ankle. Ironically, my orthopaedic surgeon specialises in sports medicine, even though chronic illness and disability has made me less active. This is because sports injuries can be pretty violent, and my knees broke pretty violently by themselves. [**The incident rendered me disabled overnight**](https://achronicvoice.com/suddenly-disabled/), and left me [**bed bound for a year**](https://achronicvoice.com/recovery-time-for-simultaneous-bilateral-patellar-tendon-rupture/).
Whilst I need to see my orthopaedic surgeon on a less frequent basis now, he is still on my emergency to-dial list because my disabilities are kind of permanent. I can't squat or run anymore, and my knees feel like wooden blocks.
## 12\. Upper Gastrointestinal Surgeon
Gastrointestinal issues are a whole new minefield for me, one that I have no clue how to navigate yet. Like with many other chronic conditions, and like what the upper GI doctor said, symptoms and treatments are highly individual.
I recently had esophageal surgery done to 'fix' my [**esophageal diverticula issues**](https://achronicvoice.com/epiphrenic-esophageal-diverticulum-personal-experiences-tips/) that were causing regurgitation whilst sleeping. Unfortunately, the surgery seems to have opened new cans of worms. I now have [Dumping Syndrome](https://www.ncbi.nlm.nih.gov/books/NBK470542/) (Hui & Bauza, 2023), which affects the lower part of my digestive system, and also [severe acid reflux](https://www.nejm.org/doi/abs/10.1056/NEJM199409083311007) (Pope, 1994), [where I throw up non-stop at night](https://achronicvoice.substack.com/p/post-esophageal-surgery-now-my-life).
It also seems like there isn't much they can do for me, except to add more medications to my already long list of daily medications. I am still experimenting with foods and medication dosages to see what works. This process can sometimes cause more pain, but I don't have any other choice but to try and figure it out.
Read Related Posts:
- [Learn More About the Super Rare Disease – Esophageal Diverticulum](https://achronicvoice.com/rare-disease-esophageal-diverticulum/)
## 13\. Colorectal Surgeon / Proctologist
Of all the clinics I have been to, this tends to be the one packed with the oldest folks. I first saw a [colorectal surgeon](https://my.clevelandclinic.org/health/articles/24409-colorectal-surgeon) (Cleveland Clinic, 2022) at the hospital for chronic [rectal bleeding](https://www.ncbi.nlm.nih.gov/books/NBK563143/) (Sabry & Sood, 2023) and [haemorrhoids](https://www.health.harvard.edu/diseases-and-conditions/hemorrhoids%5Fand%5Fwhat%5Fto%5Fdo%5Fabout%5Fthem) (Harvard Health Publishing, 2025). Visits tend to be quick (although you wait for hours) - a finger or tube up your bum, and he's done.
I also see a private colorectal specialist on the side, because when I get symptoms the pain is acute, and I need pain relief like *yesterday*. My private colorectal specialist also made some calls and we managed to get a biopsy done at the same time as my esophageal surgery. It was a good thing that we did, because we learned that I have [AIN 3](https://www.cancerresearchuk.org/about-cancer/anal-cancer/stages-types/number-staging/stage-0-anal-intraepithelial-neoplasia), which are precancerous cells (Cancer Research UK, 2025).
This means that I will definitely need to get surgery done at some point to remove them. It also means that I probably need to see a colorectal surgeon for life, to ensure that they don't recur.
## 14\. Respiratory Medicine Doctor / Pulmonologist
I see a [pulmonologist](https://www.lung.org/blog/know-your-providers-pulmonologist) (Kimble, 2019) for several reasons. I have scarring in my lungs from various medical incidents - the pulmonary embolism at 17, the bout of tuberculosis, and also from chest tube insertions and lung infections due to various surgeries.
I follow up with the respiratory medicine department on a fairly regular basis now, to ensure that any current defects are not becoming abnormal. Or *more* abnormal.
## 15\. Infectious Disease Specialist
[Infectious disease doctors](https://my.clevelandclinic.org/health/articles/25022-infectious-disease-doctor) specialise in diseases that can spread to others. This includes a wide range of diseases, including but not limited to: HIV, measles, tuberculosis, COVID-19, and certain bacterial infections (Cleveland Clinic, 2023a).
I need to follow up with my infectious disease specialist on a fairly regular basis, just to monitor certain latent but permanent illnesses. (Don't worry, they're not that easily spreadable or they would have locked me up by now.)
## Other Healthcare Specialists Who are Not Doctors (But Still a Vital Part of My Healthcare Team)
### 16\. Rheumatology Nurse Clinician
My rheumatology nurse clinician works in tandem with my rheumatologist, and does a lot of work behind the scenes. These nurses follow up on problems of a smaller scale, or of a more predictable or routine nature. For example, I always see my rheumatology nurse clinician before and after surgeries to [**titrate my warfarin and clexane doses**](https://achronicvoice.com/medications-and-antiphospholipid-syndrome/) (anticoagulant medications).
### 17\. Physiotherapist
Physiotherapists are not medical doctors, but they do work closely with various surgical departments in order to rehabilitate patients. I was only allowed to start physiotherapy [**6 weeks after the knee surgery**](https://achronicvoice.com/knee-surgery-spontaneous-bilateral-patellar-tedon-rupture-weeks-1-6/), and by then most of my leg muscles had already wasted away.
Increasingly, patients who are going for planned surgeries need to go for [prehabilitation](https://www.sciencedirect.com/science/article/pii/S0007091221007959), too. The physiotherapy's role is to help the patient build up their strength with the aim of a faster recovery post surgery (Gillis et al., 2022). I last saw a physiotherapist for this reason a few months ago.
If I wanted to, I could probably request for a new referral to gain access to their specialised services and gym equipment needed to work out safely.
Read Related Posts:
- [Physiotherapy After Knee Operation](https://achronicvoice.com/physiotherapy-after-knee-operation/)
- [The Chronic Pain Cycle & How to Break It (Top Tips From an Occupational Therapist)](https://achronicvoice.com/break-chronic-pain-cycle-occupational-therapist-tips/)
- [Is Yoga Accessible for People with Chronic Illness?](https://achronicvoice.com/accessible-yoga-chronic-illness/)
- [Top Tips for Travelling with Chronic Illness & Disability (From a Girl Who Loves to Travel)](https://achronicvoice.com/travelling-with-chronic-illness-disability/)
### 18\. Dietitian
A [dietitian](https://my.clevelandclinic.org/health/articles/dietitian) (Cleveland Clinic, 2024b) is not a doctor, but they are still a key part of my healthcare team. My dietitian works with my upper GI doctor, with the combined aim of reducing my symptoms through dietary changes. They also monitor my weight to ensure that I am within a healthy range.
Personally, my dietitian has been more enlightening than my upper GI surgeon thus far, in terms of tips on how to manage the Dumping Syndrome and acid reflux issues. My surgeon simply prescribed medications 🤷🏻♀️
Read Related Posts:
- [The Causes & Dangers of Malabsorption & An Easy Way to Get Your Nutrients](https://achronicvoice.com/causes-dangers-malabsorption-get-nutrients/)
- [Dysphagia & Swallowing Problems (and How Oral Vitamin Sprays Can be of Help to You)](https://achronicvoice.com/dysphagia-oral-vitamin-sprays/)
- [Vitamin D & Vitamin K2: How They Boost Each Other in the Body](https://achronicvoice.com/vitamin-d-vitamin-k2/)
- [Oral Spray Vitamins: A Quick & Easy Way to Get Your Nutrients with Chronic Illness](https://achronicvoice.com/oral-spray-vitamins/)
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## All the Other Different Types of Doctors I've Seen (and Might See Again)
As anyone with a chronic illness can testify, many of our symptoms can come and go in the blink of an eye. Often there is no explanation, and doctors are just as confused. The conclusion is always that it is an 'idiopathic condition', or a 'birth defect'.
As a result, I have seen hand surgeons, urologists, haematologists, sleep specialists (somnologists) and many other medical specialists. I have even sought out various doctors within the same field for second, third and forth opinions. It is amusing [**how much an opinion can cost**](https://achronicvoice.com/death-broken-heart/), seeing that they are often unwanted on a regular day.
Apart from medical doctors, many patients with chronic illness and disabilities also need to work with other health-related specialists for various reasons. A few examples are: a physical therapist to help with pain management, or an occupational therapist to [**improve home accessibility**](https://achronicvoice.com/maximise-accessibility-home/).
## Conclusion as to Why I Need to See So Many Different Types of Doctors
The next time someone says that they have a chronic illness or disability, know that they often see more than just one doctor. Medical appointments can feel like a full time job on some days, and eat into your entire day.
I've spent up to 6 hours just waiting for medical test reports, appointments and to collect medications. It's worse at the Accident & Emergency (A&E), where it can take days to get a bed should you need to be warded.
I hope that this post has been insightful as to why people with chronic illness and disability need to see so many different types of doctors on a regular basis. Each of our 'doctor mix' can also vary greatly. Some of us see the same type of specialist for different reasons, too. This goes to show just how complex both chronic illnesses and medical specialties can be.
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Read Related Posts:
- [How to Prepare for a Medical Appointment in a Post-Pandemic World (4 Top Tips From a Doctor)](https://achronicvoice.com/prepare-medical-appointment/)
- [When Autoimmune Disorder Ravages Your Face (and How That Led to My Body Dysmorphic Disorder)](https://achronicvoice.com/body-dysmorphic-disorder/)
- [Tell Me You’re Chronically Ill Without Telling Me You’re Chronically Ill (52 Chronic Illness Memes)](https://achronicvoice.com/chronic-illness-memes/)
- [MediSearch Review: A Medical AI Search Engine for Patients, Clinicians & Medical Writers](https://achronicvoice.com/medisearch-review-medical-ai-search-engine/)
- [Is My Doctor Right for Me?](https://achronicvoice.com/is-my-doctor-right-for-me/)
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### References:
- American Association for Pediatric Ophthalmology & Strabismus. (2023, March). *Dilating eye drops.* https://aapos.org/browse/glossary/entry?GlossaryKey=37182552-8081-4f19-91a5-ee34f973bfdf
- American Board of Orthopaedic Surgery. (n.d.). *Orthopaedics.* Retrieved August 3, 2025, from https://www.abos.org/about/what-is-orthopaedics/
- American College of Rheumatology. (n.d.). *Rheumatologist.* Retrieved August 3, 2025, from https://rheumatology.org/rheumatologist
- American Psychiatric Association. (2023, January). *What is psychiatry?* https://www.psychiatry.org:443/patients-families/what-is-psychiatry
- American Psychological Association. (2013). *Science of psychology.* Https://Www.Apa.Org. https://www.apa.org/education-career/guide/science
- Browne, D. T., & Smith, J. A. (2019, April 11). *Do you need a doctorate to be a clinical psychologist?* Psychology Today. https://www.psychologytoday.com/sg/blog/why-family-matters/201904/do-you-need-doctorate-be-clinical-psychologist
- Cancer Research UK. (2023, February 23). *Stages and grades of vulval cancer.* https://www.cancerresearchuk.org/about-cancer/vulval-cancer/stages-types-grades/stages-grades
- Cancer Research UK. (2025, June 23). *Anal intraepithelial neoplasia (AIN).* https://www.cancerresearchuk.org/about-cancer/anal-cancer/stages-types/number-staging/stage-0-anal-intraepithelial-neoplasia
- Churchill, J., & Gudgel, D. T. (2025, July 24). *What is an ophthalmologist vs optometrist?* American Academy of Ophthalmology. https://www.aao.org/eye-health/tips-prevention/what-is-ophthalmologist
- Cleveland Clinic. (n.d.). *Gynecologic oncology.* Retrieved August 3, 2025, from https://my.clevelandclinic.org/departments/obgyn-womens-health/depts/gynecologic-oncology
- Cleveland Clinic. (2021, December 7). *Annuloplasty.* https://my.clevelandclinic.org/health/treatments/22224-annuloplasty
- Cleveland Clinic. (2022, November 2). *Colorectal surgeon.* https://my.clevelandclinic.org/health/articles/24409-colorectal-surgeon
- Cleveland Clinic. (2023a, May 30). *Infectious disease doctor.* https://my.clevelandclinic.org/health/articles/25022-infectious-disease-doctor
- Cleveland Clinic. (2023b, August 2). *Mitral valve stenosis.* https://my.clevelandclinic.org/health/diseases/21903-mitral-valve-stenosis
- Cleveland Clinic. (2024a, July 19). *Cardiologist.* https://my.clevelandclinic.org/health/articles/21983-cardiologist
- Cleveland Clinic. (2024b, December 19). *Dietitian.* https://my.clevelandclinic.org/health/articles/dietitian
- Cooper, D. B., & Menefee, G. W. (2023). Dilation and curettage. In *StatPearls.* StatPearls Publishing. http://www.ncbi.nlm.nih.gov/books/NBK568791/
- Epilepsy Foundation. (n.d.). *What is epilepsy?* Retrieved August 3, 2025, from https://www.epilepsy.com/what-is-epilepsy
- Gillis, C., Ljungqvist, O., & Carli, F. (2022). Prehabilitation, enhanced recovery after surgery, or both? A narrative review. *British Journal of Anaesthesia, 128*(3), 434–448\. https://doi.org/10.1016/j.bja.2021.12.007
- Global Autoimmune Institute. (n.d.). *Understanding autoimmune disease.* Retrieved July 27, 2025, from https://www.autoimmuneinstitute.org/understanding-autoimmune-disease/
- Gynaecologist Singapore. (n.d.). *Singapore gynaecologist directory.* Retrieved August 3, 2025, from https://www.gynaecologist.sg/
- Hansen, & Schuman, S. G. (2011, June 1). Hydroxychloroquine-induced retinal toxicity. *EyeNet Magazine.* https://www.aao.org/eyenet/article/hydroxychloroquine-induced-retinal-toxicity?june-2011
- Harvard Health Publishing. (2025, February 7). *Hemorrhoids and what to do about them.* Harvard Medical School. https://www.health.harvard.edu/diseases-and-conditions/hemorrhoids\_and\_what\_to\_do\_about\_them
- Healthline. (2018, June 18). *Salivary gland disorders.* https://www.healthline.com/health/salivary-gland-disorders
- Hui, C., & Bauza, G. J. (2023). Dumping syndrome. In *StatPearls*. StatPearls Publishing. http://www.ncbi.nlm.nih.gov/books/NBK470542/
- Johns Hopkins Medicine. (2024, April 30). *Electroencephalogram (EEG).* https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/electroencephalogram-eeg
- Kimble, B. (2019, May 14). *Know your providers: What does a pulmonologist do?* American Lung Association. https://www.lung.org/blog/know-your-providers-pulmonologist
- Mayo Clinic. (2023, October 13). *Heart arrhythmia.* https://www.mayoclinic.org/diseases-conditions/heart-arrhythmia/symptoms-causes/syc-20350668
- Mayo Clinic. (2024, November 12). *Echocardiogram.* https://www.mayoclinic.org/tests-procedures/echocardiogram/about/pac-20393856
- National Cancer Institute. (n.d.). *CIN 3.* National Institutes of Health. Retrieved August 3, 2025, from https://www.cancer.gov/publications/dictionaries/cancer-terms/def/cin-3
- National Commission on Recognition of Dental Specialties and Certifying Boards. (n.d.). *Recognized dental specialties.* Retrieved August 3, 2025, from https://ncrdscb.ada.org/recognized-dental-specialties
- National Heart, Lung, and Blood Institute. (2022, March 24). *What are heart valve diseases?* National Institutes of Health. https://www.nhlbi.nih.gov/health/heart-valve-diseases
- National Institute of Arthritis and Musculoskeletal and Skin Diseases. (2024, June). *Sjögren’s disease.* National Institutes of Health. https://www.niams.nih.gov/health-topics/sjogrens-disease
- Nourish Dental Sleep & TMJ Care. (2025, March 3). *Bruxism and obstructive sleep apnoea (with additional neuropathic pain) (case study #14).* https://nourishdentalcare.com/bruxism-and-obstructive-sleep-apnoea-neuropathic-pain-case-study-14/
- Pope, C. E. (1994). Acid-reflux disorders. *New England Journal of Medicine, 331*(10), 656–660\. https://doi.org/10.1056/NEJM199409083311007
- Sabry, A. O., & Sood, T. (2023). Rectal bleeding. In *StatPearls.* StatPearls Publishing. http://www.ncbi.nlm.nih.gov/books/NBK563143/
- Saccucci, M., Di Carlo, G., Bossù, M., Giovarruscio, F., Salucci, A., & Polimeni, A. (2018). Autoimmune diseases and their manifestations on oral cavity: Diagnosis and clinical management. *Journal of Immunology Research, 2018*(1), 6061825\. https://doi.org/10.1155/2018/6061825
- Shi, G., Zhang, J., Zhang, Z. (Jason), & Zhang, X. (2013). Systemic autoimmune diseases. *Journal of Immunology Research, 2013*(1), 728574\. https://doi.org/10.1155/2013/728574
- Spencer, D. (2015). Auras are frequent in patients with generalized epilepsy. *Epilepsy Currents, 15*(2), 75–77\. https://doi.org/10.5698/1535-7597-15.2.75
- Tiwari, M. (2011). Science behind human saliva. *Journal of Natural Science, Biology, and Medicine, 2*(1), 53–58\. https://doi.org/10.4103/0976-9668.82322
- University of Utah Health. (2021, April 6). *When to see a neurologist.* https://healthcare.utah.edu/neurosciences/neurology/neurologist
- Villa-Forte, A. (2025, January). Introduction to the biology of the musculoskeletal system. *MSD Manual Consumer Version.* https://www.msdmanuals.com/home/bone-joint-and-muscle-disorders/biology-of-the-musculoskeletal-system/introduction-to-the-biology-of-the-musculoskeletal-system
### Comments Archives:
Comments imported from previous WordPress site.
- [ Carrie Kellenberger ](https://myseveralworlds.com) Dec 18, 2020
And this is what leads to full doctor burnout, which no one ever addresses or even thinks about...
- [ Claire ](http://throughthefibrofog.com) Dec 16, 2020
Oh gosh yes. I also have a neurologist, two rheumatologists...
- [ Sheryl Chan ](https://www.achronicvoice.com/) Dec 17, 2020
It’s crazy isn’t it! A time sucker, money sucker, energy sucker...
**Start a new conversation in the Member Comments below!**
### We Want to Have Fun Just Like You, But Here’s What it Takes with Chronic Illness
URL: https://achronicvoice.com/want-to-have-fun-chronic-illness/
Last updated: 2026-01-06T14:55:07.000Z
## Do We Even Want to Have Fun at All?
So [**your friend with chronic illness**](https://achronicvoice.com/better-friend-chronic-illness/) has rejected your party invitation…again. Or they’ve included a list of T&Cs just in case they have to bail last minute. What’s up with that? Do they hate you or something? I booked a champagne brunch the other day for the boy’s birthday and thought, why not use it as a real life example to provide insight? Shall we go through the experience together?
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
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## The Physical and Mental Preparation It Takes If We Want to Have Fun
I got lucky with this booking. It was only on one specific date, the prices were reasonable, and it had magnificent views on the 43rd floor! I was anticipating his happiness, which fueled my excitement. I checked the date again – perfect. It wasn’t around the ‘bad weeks’ of my period, where extra inflammation occurs.
I started to keep a close watch on my INR using my blood test machine, and adjusted my diet to maintain an optimal range. If I was going to consume alcohol, I had to make sure that my blood wasn’t too thin, and this does not change overnight. [**Sometimes I need to avoid leafy greens for a while**](https://achronicvoice.com/living-with-antiphospholipid-syndrome/) to normalise it (you heard me right).
I made sure that I had enough exercise, especially the day before the champagne brunch itself. That always seems to help take some stress off my body from alcohol consumption. I braced myself for one to two weeks of downtime and possible pain, as alcohol and inflammation go hand in hand.
Read Related Posts:
- [Antiphospholipid Syndrome Diagnosis: The A to Z Guide as a Patient](https://achronicvoice.com/antiphospholipid-syndrome-diagnosis-a-to-z-guide/)
- [The Lowdown on Medications and Antiphospholipid Syndrome (Warfarin, Enoxaparin, DOACs, NSAIDs & More)](https://achronicvoice.com/medications-and-antiphospholipid-syndrome/)
- [Learn More About the Super Rare Disease – Esophageal Diverticulum](https://achronicvoice.com/rare-disease-esophageal-diverticulum/)
- [33 Things That Stop People with Chronic Illness From Leaving the House (Sans COVID-19)](https://achronicvoice.com/things-stop-people-chronic-illness-leaving-house/)
- [Dating with Chronic Illness (and What I’ve Learned)](https://achronicvoice.com/dating-with-chronic-illness/)
## What Happened on “The Big Day Out”
And so the big day arrived. I pricked my finger and checked my INR again – all good. Of course, if my blood had been too thin, I would have steered clear of the alcohol. My boyfriend did not force me to drink; it was my decision to celebrate with him. I mean, I do want to have fun and feel like a ‘normal person’ from time to time, too.
I took a sip of champagne to judge its effects. It was delicious, but I started to feel dizzy and ill after only half a glass. So I slid it across the table to the birthday boy, and switched to red wine. I wondered where the inflammation would strike first; it is always a lucky draw.
You have heard the word ‘inflammation’ mentioned a few times by now. What does it mean in this instance? They usually appear as angry red swells that can clump up on any body part. [**I’ve had big lumps on my forehead**](https://achronicvoice.com/visible-evidence-invisible-illness/) before (who knew there were so many blood vessels between that flat patch of skin and skull?!). It struck like clockwork after two hours. The swollen wrist I had from the day before was now a bloated, unbendable chunk of meat. The muscles in my upper arms started to throb with aches, and I had mild vertigo.
A sudden wave of nausea struck me when we stood up to leave. Descending 43 floors wasn’t much fun. Thank goodness there was no one else with us, as I looked unglamorous squatting in my dress. I had forewarned my boyfriend that we might have to hop into a cab straight home after, and this was exactly what happened.
I passed out in bed the moment we got home, and this was just from 2.5 glasses of wine! I was experiencing nausea and swelling without any of the happy effects. That was a bit upsetting, especially after all my careful planning. If I am going to feel sick, at least let me have a bit of fun! 😉
## The Post-Event Downtime
I had ran through all the possible scenarios in my head, but wasn’t prepared for the internal inflammation that occured this time. It did cause me to panic a little, as my stomach felt bloated and swollen for days. I [**worried about internal bleeding**](https://achronicvoice.com/refused-treatment-hospital/), so I kept a close eye on all my vital signs and daily activities. That might sound a bit paranoid, but as someone with multiple chronic illnesses, it [**doesn’t take much to trigger a catastrophe**](https://achronicvoice.com/pain-flare-triggers/).
I spent the following day in bed unwell, and utilised whatever energy I had to make a simple stew for dinner. It soothed the stomach to my relief, as that was a sign that there were no blockages from gut swelling. I recovered after a few slow days, which was a pleasant surprise. I had actually set aside and been prepared for up to two weeks of discomfort.
## Was That Really Worth the Pain?
You might have been muttering expletives whilst reading this piece. Or you might be judging me now for my incredible stupidity. Why would I even do that, especially when I knew the possible consequences?! Well, I do it for the exact same reasons as anyone else – to have a good time! And I do enjoy [**getting involved in the ‘normal world’ once in a while**](https://achronicvoice.com/keeping-up-despite-pain/).
It is pretty hit or miss with me when it comes to alcohol, so I save these wildcards for special occasions with my favourite people. On the good days, I actually have a lot of fun, although the downtime is the same. You can imagine the level of exhaustion a ‘relaxing’ Friday night out might bring. The pain and fatigue might even last throughout the whole of the next work week.
Would I do it again? Without a doubt! It’s fun and I get to bond with people in a different way. It just requires a lot of planning, and willingness to take some damage (not recommended [**during bouts of bad flares**](https://achronicvoice.com/pain-management-tips-pain-flare/)!). I have also decided long ago that keeping myself in a bubble isn’t exactly being alive either.
Am I advocating for you to go wild and party hard? Of course not. All I wanted to do was use a single experience to illustrate the amount of effort it can take for us to socialise. ‘Casual’ barbeque events have cost me just as much energy and pain. What I *am* saying is – have some fun if you can, your way!
## Sign Up for My Free Newsletter
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Read Related Posts:
- [4 Cool Truths My Partner Said (Unwittingly)](https://achronicvoice.com/cool-truths/)
- [Winter Fun, Games & Pain with Chronic Illness](https://achronicvoice.com/winter-fun-chronic-illness/)
- [Drink Pure Wine Review (A Product That Excites Me as a Person with Chronic Illness)](https://achronicvoice.com/drink-pure-wine-review/)
- [A Page From a Sick Girl’s Diary: Sometimes I Wish I was an Old Person](https://achronicvoice.com/sick-girls-diary-wish-old-person/)
- [Tell Me You’re Chronically Ill Without Telling Me You’re Chronically Ill (52 Chronic Illness Memes)](https://achronicvoice.com/chronic-illness-memes/)
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### Comments Archives:
Comments imported from previous WordPress site.
- [ Carrie Kellenberger ](https://myseveralworlds.com) Jan 11, 2021
Sometimes we take the risks knowing what will happen because we want to feel normal for a bit. I don’t drink much and can’t drink wine at all, yet on Christmas, I decided to do a brunch, had white wine, and didn’t even recognize myself. What a mess afterwards! But I had fun and for once in 2020, I felt normal. This Saturday I’m having a small afternoon get-together with some friends for my birthday. I am going heavy on the cake and will likely stick to a glass or two of beer because it doesn’t seem to hit me as hard. But the upper arm pain and swollen stomach and everything else you’ve mentioned here – it never fails! So frustrating! (But I’m still planning on enjoying that time!)
- Ann Feb 26, 2017
For me, sugar seems to be the enemy — it makes me fatigued and my joints hurt more. I wish I had more energy. I do reiki and that’s a big help. Sheryl, you sound like you’ve had a rough road. Have you asked your angels for help? Clean diet is a big deal. Good luck to you,
- [ Sheryl Chan ](https://www.achronicvoice.com/) Feb 26, 2017
Hi Ann,
Yes I believe sugar does play a big role, but I do have a sweet tooth 😡 I am glad reiki works for you. Thank you for taking the time to read and comment! 🙂
- Amy Oct 18, 2016
You have a different set of health conditions than I do, and therefore very different symptoms, but I still recognize myself in this. I have to spend days — sometimes weeks — gearing my body up for a special event, and sometimes I run into huge problems no matter how well I’ve planned and prepared. But yes, absolutely, it’s worth it to get out of the house, see some friends, have whatever fun my body will allow. Even when I’m laid up for days afterward, it’s worth it.
- [ Sheryl Chan ](https://www.achronicvoice.com/) Oct 18, 2016
Dear Amy,
Thank you for taking the time to read and comment 🙂 And I’m glad you understood the message I was trying to get across with this article, as there has been some backlash on other channels that focussed on the alcohol aspect of it. But just this week I went to visit a friend and her kids, and am now paying for it just the same 😉 I hope you get more good days than bad for the rest of the year. Wishing you lots of inspiration for your photography and writing. Keep it up! 🙂
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### Dating with Chronic Illness (and What I've Learned)
URL: https://achronicvoice.com/dating-with-chronic-illness/
Last updated: 2026-05-11T15:51:20.000Z
## Dating with Chronic Illness – A Thorny Topic
Dating with chronic illness is no easy, straightforward feat for either party. Questions like this are all over Quora and Reddit: “[Would you date or marry a person with chronic illness?](https://www.quora.com/Would-you-date-a-person-with-chronic-illness)”. So I thought I’d share my perspective, as a person who’s chronically ill and disabled. Over the years, I’ve been in long-term, short-term and even long-distance relationships. I’ve also tried various dating apps, and met partners through friends. I much prefer the latter, but it does get harder the older you get!
P.s. The original version of this post was published on 26 February, 2017 (8 years ago!). More insights into dating, relationships, self-worth, disability and chronic illness have been added 🙂
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
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## Just Like Chronic Illness, Every Relationship is Unique
I’ve been fortunate enough to have had relationships with partners from extreme ends of the spectrum. It gives me insight into different perspectives, which enables me to identify and appreciate certain characteristics better. Their opinions about our future together were diverse, and so were their attitudes towards my daily health struggles. Before going further, I’d like to state that the purpose of this article isn’t to bash anyone at all. Everyone is entitled to how they want to live their lives, and who they want to do that with, for better or for worse.
### Partners Who Saw My Chronic Illnesses as a Liability
My first relationship was with a guy whose greatest desire was to start a family of his own, and it troubled him that I never seemed to get better. He did not like the open-ended, variable timetable of my chronic illnesses. Neither did he want to start with a ‘deficit’ before even trying for a child.
I underwent a few surgeries whilst we were dating, and he felt tormented that he could do ‘nothing’ to make it better. Yet, he never provided any emotional support, and would often bail out on the bad days. I ended up having to be stronger for him, because ‘it was difficult for him too’. I would always give in to him, because I thought that I had less rights to my own opinions. It was already a burden for someone to be with me, what more could I ask for?
#### **Dates Who Tried, Then Ran**
I’ve also dated men who were willing to try things out for a couple dates, but who were constantly analysing my limits. This isn’t too fair in my opinion for several reasons. First, I have good and bad days, and you might be seeing me during a bad week. Second, and this is applicable to healthy individuals, too – it takes a bit of time to truly know who a person is, both the good and bad. Third, their assessment of my capabilities is usually inaccurate, because it tends to be biased. Unfortunately, when you’re chronically ill or disabled, people tend to hyperfocus on the limitations and judge you more keenly and immediately.
Then there are those dates where they see me arrive with a walking stick on a bad day. We have a short, polite chat, before they run for the hills and hide themselves behind a wall of silence. Whilst this feels unpleasant, I have learned to accept that it’s all part of the dating game, sick or otherwise.
#### **Divorced Partners are Not Necessarily More “Chill”**
There was a period of time I said to myself, “well, let’s wait for all the married men to get divorced. They should be wiser and more open-minded now, and realise that there’s more to a relationship than chronic illness”.
This turned out to be false. I obviously can’t speak for all divorced men, but the ones I have personally interacted with were fairly extreme. They were either paranoid (“you haven’t replied to my message in 24 hours, even though there are two blue ticks!”), or fixated on a certain ideal (hyperfocused on a singular quality, to the exclusion of all other qualities). Chronic illnesses still bothered most of them. Divorced men are not necessarily wiser than an unmarried person. They are still human, with strengths and flaws alike.
Read Related Posts:
- [Disability & Sex: Disabled People are Not Automatically Bad Sexual or Romantic Partners](https://achronicvoice.com/disability-and-sex/)
- [Chronic Illness is Unpredictable, but You Don’t Always Have to Fear the Unknown](https://achronicvoice.com/chronic-illness-unpredictable-dont-fear-unknown/)
- [Life with Chronic Illness: Happiness & Pain Can Co-exist](https://achronicvoice.com/chronic-illness-happiness-and-pain/)
- [Today is Not a Good Day to Make Decisions (and That’s Okay)](https://achronicvoice.com/today-is-not-a-good-day/)
- [The Stories We Tell Ourselves: Prisons or Paths to Freedom](https://achronicvoice.com/stories-we-tell-ourselves-prisons-freedom/)
### Partners Who Were Accepting of My Chronic Illnesses
My next partner always saw the future in a hopeful light, and went with the flow of life. For example, he believes that healthcare and medicine can only improve as more scientific advances are being made. He saw me at my worst, yet never once treated me as a lesser human being.
I know for sure that life will never be easy with me, yet it was a non-issue to him. He claims that there is nothing wrong with me at all, and that I didn’t affect his lifestyle. Another revelatory phrase he made was that every relationship has its own set of problems anyway, whether the partners were sick or healthy. (You can [**read more brilliant utterances about relationships he made in this post**](https://achronicvoice.com/cool-truths/).)
I found that I grew with him as a person, because of his support to the very end. He never undermined any desire I had for education, which comes in many forms. Apart from the intellect, it also consists of life skills, hobbies, and most importantly, self-awareness.
Mental and invisible health issues are often seen as suspicious in the eyes of the public, but I never felt stigmatised by him. I could display my psychological and physical pains at the level of torture that they were truly at. That brought so much relief - just to have someone who believes you, and who never belittles the impact your experiences have on you.
Whilst we have broken up, we are still friends, and I visit him and his family every Christmas. I am genuinely happy for him, because I believe people like him truly deserve the best that life has to offer.
Read Related Posts:
- [What’s it Like to be a Caregiver for a Chronically Ill Loved One (The Challenges & Rewards)](https://achronicvoice.com/caregiver-chronically-ill-loved-one/)
- [Why Self-Acceptance is Important When You Have a Chronic Illness](https://achronicvoice.com/self-acceptance-chronic-illness/)
- [365 Mindfulness Journaling Prompts for Self-Improvement](https://achronicvoice.com/365-mindfulness-journaling-prompts-for-self-improvement/)
- [Fun Things To Do While Recovering From Surgery: Hobbies, Crafts & Games](https://achronicvoice.com/fun-things-to-do-while-recovering-from-surgery/)
- [What’s It Like Going Back to School as an Adult with Disability and Chronic Illness](https://achronicvoice.com/going-back-to-school-as-an-adult-disability-chronic-illness/)
## The Most Important Thing I’ve Learned from Dating with Chronic Illness
If there’s one I’ve learned over the years from dating as a person with chronic illness, it is to have some respect for myself. If I were dating someone who treated me with contempt, resentment or blame, then I – a person with chronic illness and disability – would leave them.
With age, experience and the freedom I have had to grow, I’ve learned that I am worth just as much as any other person out there. So what if my illnesses are permanent? There is only one me amongst the *billions* of us on this planet, and we are all worth something in that regard.
In fact, an aura of quiet self-confidence and knowing your inherent self-worth can be attractive traits to potential partners. You are as deserving of love as any other human being; we are all part of the same world, and return to dust just the same.
### All Human Beings Need a Little Help to Get by in Life
There is no doubt that a person with chronic illness will need more help than someone who is healthy just to get by. Many situations might test your patience, question your love and flirt with your morality. In modern day culture, independence is a revered trait, and we like to think that we are independent beings.
But that is not how humanity has thrived over the centuries. [We are social creatures built for community](https://hbr.org/1998/07/how-hardwired-is-human-behavior). It is an important aspect of social well-being. Yes, even introverts need a touch of human connection every now and then, in order to thrive.
And no human being is truly independent, anyway; just cut off their oxygen supply for a minute. We all depend on something to survive and thrive – a relationship with a chronically ill or disabled person also has the potential to help you develop as a person, and to live a fulfilling life ultimately. Perhaps even more so, because it will force you to reflect on your priorities, purpose and goals in life more than you would otherwise.
Pin to Your Dating & Life Lessons Boards:
Read Related Posts:
- [Are You a Capable Person? What Does That Even Mean?](https://achronicvoice.com/capable-person-meaning/)
- [I Have No Purpose in Life, and Therein Lies My Life Purpose](https://achronicvoice.com/i-have-no-purpose-in-life/)
- [Call Me Sick Girl (Or How to Make Your Weakness Your Strength)](https://achronicvoice.com/sick-girl-make-weakness-strength/)
- [Asking for Help (and Why Everyone Needs to Learn this Important Life Skill)](https://achronicvoice.com/asking-for-help-life-skill/)
- [How to Use the 7 Dimensions of Wellness to Thrive with Chronic Pain](https://achronicvoice.com/dimensions-of-wellness-thrive-chronic-pain/)
## How Chronic Illness & Disability has Influenced the Way I Approach Romantic Relationships
To be honest, after having faced several life-and-death situations, I’ve become more stoical than I already was to begin with. Acceptance took me years to grasp, and I often need to learn to accept a new diagnosis all over again. However, I will vouch that it is the best coping tool and strategy that has enabled me to live my life, despite chronic illness. And if we’re being completely honest here, I am still grieving the [**loss of function in my knees**](https://achronicvoice.com/knee-surgery-spontaneous-bilateral-patellar-tedon-rupture-weeks-1-6/). Grief and acceptance are two sides of the same coin; they come and go like visitors, and are not linear processes.
I actually adopt this mindset of acceptance when I approach relationships and dating with chronic illness as well. “Whatever will be, will be”, “que Será, Será”. For example, I never worry if my partner is going to cheat on me. If they do, then I will just up and leave – obviously it wasn’t meant to be.
Interestingly, this bothered a boyfriend, as he assumed that it meant that I didn’t like him enough to care. However, I’ve dealt with way more harrowing experiences, so I consider many everyday problems as trivial. You could say that it’s a bit like scar tissue – tougher, but less sensitive, which can be both a good and bad thing.
Pin to Your Chronic Illness, Disability & Relationships Boards:
Read Related Posts:
- [An Experience from Hell: Pulmonary Embolism, DVTs & Antiphospholipid Syndrome](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)
- [What It Feels Like to be Suddenly Disabled](https://achronicvoice.com/suddenly-disabled/)
- [What it Feels Like to be Refused Treatment by a Hospital’s A&E / ER](https://achronicvoice.com/refused-treatment-hospital/)
- [So This is What a Tonic Clonic Seizure Feels Like](https://achronicvoice.com/tonic-clonic-seizure/)
- [Interview on ‘The Uninvisible Pod’: What I’ve Learned From Living with Chronic Illness for 20 Years ](https://achronicvoice.com/interview-uninvisible-pod/)
## Other Insights I’ve Gained from Dating with Chronic Illness & Disability
Whilst it is true that anyone can become disabled at any time, this fact doesn’t sink into healthy people’s brains regardless. I can’t blame them for that, as the devastation of chronic illness and disability is impossible to grasp, unless you live that reality yourself. [Humans are also wired for self-preservation](https://dictionary.apa.org/self-preservation-instinct). This means that they instinctively avoid things that may contribute towards the eradication of their lives or legacies.
If I’m going to be logical, health is wealth. Who doesn’t want to be healthy? So yes, we are starting out with a deficit in life. However there is an extremely fine line between worth1 and worth2 that people often confuse. What do I mean by that? [This statement from Positive Psychology](https://positivepsychology.com/self-worth/) helps to clarify it a little:
> “Self-esteem is what we think and feel and believe about ourselves. Self-worth is recognizing ‘I am greater than all of those things.’ It is a deep knowing that I am of value, that I am loveable, necessary to this life, and of incomprehensible worth.”
In brief, people often confuse self-worth – where every human being is inherently valuable, and deserving of love and respect – with material or tangible value. It’s an issue of feeling secure or insecure. In a ‘modern’, capitalist era, it’s not that much of a shocker either, as we’ve been exposed to such ideals from our childhoods, and our parents may have even placed an emphasis on it.
## My Best Tips for Dating with Chronic Illness
The communication style, character, values, sense of humour and lifestyle of all the people I’ve dated were vastly different. So it’s been an interesting, though admittedly exhausting, ride thus far.
I also broke both my knees fairly recently, [**no thanks to Lupus and long-term steroid treatment**](https://achronicvoice.com/recovery-time-for-simultaneous-bilateral-patellar-tendon-rupture/), plus [**developed yet more chronic diseases**](https://achronicvoice.com/epiphrenic-esophageal-diverticulum-personal-experiences-tips/). These unasked for additions have definitely made dating much harder, as my disabilities become more and more apparent. Sure, rejection from being chronically ill and disabled stings, but it’s also for the best. I would be walking on eggshells, if I were with a partner whom I had to constantly prove and pretend I was healthy to.
### Dating Tips for the Chronically Ill & Disabled
Here are a few of my personal golden rules, when it comes to dating with chronic illness and disability. Your list might look different, based on your own comorbidities, life experiences and personality.
1. **Have some self-respect.** If a potential partner disrespects you in any way, leave. It’s better to be single than with someone who doesn’t treat you right. This will only compound problems in your life, such as [**mental health issues**](https://achronicvoice.com/depression-diagnosed-late/).
2. **Be open-minded and explore.** Yes it’s true – the more nets you cast, the more fish you get. This strategy definitely doesn’t work for everyone, due to a myriad of reasons, such as limited energy, religious beliefs, etc. But I believe in trying things out.
I mean, it’s just one date over coffee or dinner. At worst, you waste some time and discover that you’re incompatible. The reasons may not even be related to chronic illness – it happens to regular people, too. At best, you find your special person. Whilst I’m not an extrovert, I take it as an opportunity to socialise. I also believe that I can learn something from every person I meet – even from the bad dates. In that sense, there is no loss.
3. **Do they offer to pay for the first date?** I am definitely not looking for a free meal and will refuse the offer, but this simple act of generosity tells me a few things. Basically, if they can’t even be generous financially, which is arguably the easiest, then how generous can they be with other more important or ‘difficult’ aspects of life, such as quality time, medical emergencies, or if you had kids?
4. **Just be yourself.** In the wise words of Dave Grohl, “No one is you and that is your biggest power”. You might be surprised who falls in love with you - the real you. In the mess and glory of your full humanity. Even Joker has his Harley Quinn, so that gives me hope.
5. **Know that you will face rejection, and be okay with that.** Whilst we might face more romantic rejections than an abled individual, there is an upside to that as well - we only get to be with the best sorts of people on this planet. In that sense, chronic illness is an automatic filter that sifts out the bad eggs.
6. **Know your self-worth.** It is also important to be aware of your self-worth at all times - whether you’re single or in a relationship. Ironically, it was chronic illness that forced me to hone this awareness through acceptance. Self-acceptance isn’t an admission of failure; rather, it asks us to put our ego aside in order to unlock possibilities, be at peace, and regain a sense of freedom.
Pin to Your Dating, Disability & Chronic Illness Boards:
Read Related Posts:
- [Loss of Identity with Chronic Illness & The Plot Twist: Sharpened Self-Worth](https://achronicvoice.com/loss-of-identity-chronic-illness/)
- [How to Have a Healthy Relationship with Your Body (Even with Chronic Illness)](https://achronicvoice.com/healthy-relationship-with-body-chronic-illness/)
- [Chronic Illness Quotes to Inspire, Motivate, Grieve, Hope & Laugh About](https://achronicvoice.com/chronic-illness-quotes/)
- [There’s No One Way to Live Your Life](https://achronicvoice.com/no-one-way-live-your-life/)
- [Keeping Up with the World: Why it’s Important Despite Pain](https://achronicvoice.com/keeping-up-despite-pain/)
### Dating Tips & Insights for Potential Partners
So, someone interesting has caught your eye. You think that they may be your ‘type’ of person. The ‘problem’? They have a long-term illness or disability. This section addresses some questions you may have, but are unsure who to ask, or if it’s appropriate to ask. I will try to be as unbiased as I possibly can.
1. **Understand that there is no perfect partner or relationship.** Every single person brings a new dynamic to a relationship. There are pros and cons to each dynamic. Decide what matters most to you most.
2. **Don’t ghost.** What’s up with ghosting these days? This is my number one pet peeve when it comes to dating in general. If you decide that it’s not going to work out, do the courtesy of letting the other party know, so they get some closure. Why lead someone on before disappearing into the ether?
3. **Shift your perspective.** Something interesting my ex-turned-boyfriend-again said to me: “Your chronic illnesses have some advantages, too. It enables me to have my own space, alone time, and time for other friends”.
I’m always happy to oblige because it means I get some me-time as well, without feeling pressured to do ‘coupley things’. Don’t get me wrong. Coupley things are important, as they generate memories and build bonds. But as a person with chronic pain and fatigue, my energy bar is limited, and I need more downtime than others.
Another caveat – said boyfriend is older now, so he’s seeking different experiences in life as well. Age does play a part to an extent. In a sense, his body has ‘caught up’ a little with mine. Whilst he’s definitely still a social creature, he also appreciates time at home a little more now. So we watch films and play chess at home, and go out for the occasional brunch, party or exhibit.
## Conclusion to Dating with Chronic Illness
This article is a sum of my experiences in regards to dating with chronic illness and disability thus far, but the story hasn’t ended yet. (Does it ever end, really?) I am still learning as I go along, and will add to this post should I gain any other insights.
I would also love to hear about your experiences in regards to dating with chronic illness or disability. What were your best and worst experiences, and why? If you’re happily married, how do you make it work? I would love to learn more from you as well!
And finally, if you’re an able-bodied individual, I’d love to hear your thoughts, questions and concerns as well. You can post an anonymous comment if that makes you feel more comfortable. I promise to be as open-minded and non-judgemental as I can. I believe in open, proactive discussion, as opposed to allowing misconceptions or fears to fester in the dark closet of your mind.
Happy dating to one and all - I hope you find your special person ♥️
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Read Related Posts:
- [7 Reminders For Those Bad Days to Keep You Going](https://achronicvoice.com/reminders-for-bad-days/)
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- [7 Ways to Be a Better Friend to Someone with a Chronic Illness (and 3 Things You Should Never Do)](https://achronicvoice.com/better-friend-chronic-illness/)
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Pin to Your Dating with Chronic Illness & Disability Boards:
### My Personal Experiences with Epiphrenic Esophageal Diverticulum (Plus Tips to Help Cope)
URL: https://achronicvoice.com/epiphrenic-esophageal-diverticulum-personal-experiences-tips/
Last updated: 2026-04-17T16:02:18.000Z
## Two New Diagnoses - Epiphrenic Esophageal Diverticulum & Mitral Valve Stenosis
Whilst I haven’t heard much good news in a long time, I did not expect 2025 to be a harbinger of such terrible news. It seems like I will need to get two major surgeries done, one for a severe mitral valve stenosis, and the other for an epiphrenic esophageal diverticulum. Well technically, epiphrenic esophageal diverticula, since there are two of them. Oh, and [I also broke my molar tooth on Christmas Eve](https://achronicvoice.substack.com/p/broken-tooth-christmas-eve), so that was a bonus.
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
Pin to Your Epiphrenic Esophageal Diverticulum & Rare Disease Boards:
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- [Learn More About the Super Rare Disease – Esophageal Diverticulum](https://achronicvoice.com/rare-disease-esophageal-diverticulum/)
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- [What’s it Like to Live with a Heart Rhythm Disorder?](https://achronicvoice.com/heart-rhythm-disorder/)
- [MediSearch Review: A Medical AI Search Engine for Patients, Clinicians & Medical Writers](https://achronicvoice.com/medisearch-review-medical-ai-search-engine/)
- [Latest Research on Antiphospholipid Syndrome](https://achronicvoice.com/latest-research-on-antiphospholipid-syndrome/)
## Classifications for Esophageal Diverticulum
To be honest, the diagnosis for epiphrenic esophageal diverticulum scares me more than the mitral valve stenosis, only because it’s so rare. In practice, [esophageal diverticulum is divided into a few different types of classifications](https://jtd.amegroups.org/article/view/71937/html) from an anatomical and etiopathogenic point of view (Constantin et al., 2023). They are also subdivided based on their location. [WebMD summarises the different types of esophageal diverticula here](https://www.webmd.com/digestive-disorders/esophageal-diverticulum), although the classifications can get even more fine-grained than that (Whitten, 2024).
However, from what I’ve gathered after reading multiple medical journals, there is currently no agreed upon standard for treatment. Classifications for the disease itself are not even ‘finalised’, so to speak. Meaning there is no handbook or protocol for doctors or surgeons to refer to for this condition, and it’s mainly ‘play by ear’. Both my surgeon and doctor at the hospital have only seen one case in their career.
I’ll talk about the stenosis in a separate post, as I would like to focus on my diagnosis and symptoms for epiphrenic esophageal diverticulum in this one. This post is part of a two-part series. I will share my personal experiences in this one; you can [**find more research and facts on esophageal diverticulum in this post**](https://achronicvoice.com/rare-disease-esophageal-diverticulum/).
## How I Learned About My Epiphrenic Esophageal Diverticulum
I reluctantly admitted myself to the A&E/ER one evening, as my forearm was bloated and swollen. It felt like my skin was going to burst. The only reason I had gone to the A&E was because the GP had assumed it was an abscess.
The rheumatology team saw me the next day, whilst I was snoozing along the corridor of a random ward. They were collectively certain that it was a blood clot, considering [**I have Antiphospholipid Syndrome**](https://achronicvoice.com/antiphospholipid-syndrome-diagnosis-a-to-z-guide/), a blood clotting disorder. A few scans and tests later, they were all surprised that it wasn’t a blood clot, neither was it a fracture.
They did however, find some liquid near my lung, and the outpouching characteristic of esophageal diverticulum. According to Constantin et al. (2023), “[somewhere between 0.06 - 4% \[of epiphrenic esophageal diverticulum\] are discovered incidentally](https://jtd.amegroups.org/article/view/71937/html), radiologically”.
The swollen arm and liquid in the lung subsequently resolved on their own. In fact, when they wheeled me in to do a pleural biopsy, they wheeled me back out as the surgeon said that ‘there was nothing to biopsy’. This is why I rarely rush to the A&E for every pain, even if extreme. Living with chronic illness means constant pain, and the occasional weird symptom.
My own rheumatologist said that the esophageal diverticula probably have been there for some time. He also said it was probably unrelated to my other autoimmune diseases, though I really beg to differ. I personally think it doesn’t make sense that none of my long list of medical conditions are related.
Read Related Posts:
- [What it Feels Like to be Refused Treatment by a Hospital’s A&E / ER](https://achronicvoice.com/refused-treatment-hospital/)
- [Tell Me You’re Chronically Ill Without Telling Me You’re Chronically Ill (Chronic Illness Memes)](https://achronicvoice.com/chronic-illness-memes/)
- [“But That’s Normal for Me” (Why I Mistook Dengue Fever for a Lupus Flare)](https://achronicvoice.com/mistook-dengue-fever-lupus-flare/)
- [12 Visible Evidence of a Body Gone Rogue (Is Invisible Illness Truly Invisible?)](https://achronicvoice.com/visible-evidence-invisible-illness/)
- [Why I Need to See 10 Different Doctors on a Regular Basis](https://achronicvoice.com/why-need-see-different-types-of-doctors/)
## My Epiphrenic Esophageal Diverticulum Symptoms
According to Sato et al. (2023), the [main symptoms of esophageal diverticulum](https://link.springer.com/article/10.1007/s12328-023-01765-2) are “dysphagia, regurgitation, weight loss, heartburn, respiratory complaints, and retrosternal pain when swallowing food”.
My own biggest problem was and is regurgitation, especially whilst asleep in the middle of the night. I wake to violent fits of coughing, as my esophagus tries to purge the food trapped within the pouches. Sometimes my throat is so irritated that I vomit. In fact, it happened twice again last night.
At first, I had simply assumed that it was GERD/acid reflux, as I am on long-term steroid therapy for Lupus and Sjögren’s disease. Plus I drink way too much coffee, and my eating habits are not the best (yes, sue me). When I received the diagnosis for epiphrenic esophageal diverticulum, everything made so much more sense.
Other symptoms I’ve had to date are: minor incidents of dysphagia (trouble swallowing food), and being really gassy. My digestive system makes a lot of weird noises, and I feel bloated and uncomfortable. These are sporadic with no fixed pattern. My doctor has said before that I probably have Irritable Bowel Syndrome (IBS) too, so I’m not sure what’s triggering what. Chronic illness comorbidities are fun like that.
In addition, my throat often feels scratchy, as if there are tiny specks of food trapped within it, plastered to the ‘walls’. There are ‘better’ and worse days as well. On the ‘better’ days, the symptoms are mostly quiescent with some minor coughing. On bad days, that ‘stuck’ feeling is there for almost 24 hours, and I am unable to eat without vomiting.
### My Increase in Symptoms
The symptoms rapidly became worse over time. I am now being involuntarily woken almost every night by violent coughing, regurgitation and vomiting. On a ‘better’ night, I wake once or twice. On a ‘bad’ night, that would be at least every 2 hours.
Combine that with horrendous chronic urticaria that antihistamines barely alleviate, it means that I hardly get a good night’s sleep. In fact, that happened again last night, as I was up until 6am scratching and coughing.
Unsurprisingly, this isn’t great for my physical or mental health, as I feel extremely frayed at the edges, and completely worn out. What sort of life is this, if I am in pain and discomfort both day and night? What makes it even more depressing is that there is no medication to even relieve some of the symptoms either.
Pin to Your Epiphrenic Esophageal Diverticulum & Motility Disorder Boards:
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- [Why it Feels Like Suicide is an Option When You Live with Chronic Illness or Disability](https://achronicvoice.com/suicide-chronic-illness/)
- [How Much Time Are You Wasting On Sleep?](https://achronicvoice.com/wasting-time-sleep/)
## More Information About Epiphrenic Esophageal Diverticulum
This section covers more about epiphrenic esophageal diverticulum specifically. You can [**read the research post for more information about esophageal diverticulum in general**](https://achronicvoice.com/rare-disease-esophageal-diverticulum/).
My two diverticula are mainly epiphrenic in nature (towards the tail end of the esophagus), although one is slightly higher up. Out of the various types of esophageal diverticulum, [epiphrenic esophageal diverticulum](https://pmc.ncbi.nlm.nih.gov/articles/PMC4235103/) comprises less than 10% of all cases, with an estimated incidence of 1:500,000 per year (i.e. 1 out of *half a million* people) (Abdollahimohammad et al., 2014). The most common is Zenker’s diverticulum, which occurs at the top end of the esophagus.
According to Alicuben et al. (2023), [patients with epiphrenic esophageal diverticula are symptomatic only about 10% to 20% of the time](https://books.google.com.sg/books?hl=en&lr=&id=xmGvEAAAQBAJ&oi=fnd&pg=PP23&dq=epiphrenic+esophageal+diverticulum&ots=0o4vbaWSoF&sig=hs-aOtti78ZTa5oPhaaZbuFSsW4&redir%5Fesc=y#v=onepage&q=epiphrenic%20esophageal%20diverticulum&f=false). Symptoms tend to begin when the [diverticulum becomes bigger than 5cm](https://pmc.ncbi.nlm.nih.gov/articles/PMC4235103/) (Abdollahimohammad et al., 2014).
Having said that, both my epiphrenic esophageal diverticula are a little smaller than 5cm, and I have been progressively symptomatic. I’m unsure if that’s good or bad luck. Good because I guess, well, treating something earlier is usually better than later. Bad because the symptoms are obviously not fun.
### The Complications of Epiphrenic Esophageal Diverticulum
Many [symptoms of epiphrenic esophageal diverticulum](https://www.degruyter.com/document/doi/10.7556/jaoa.2009.109.10.543/html) are similar to other gastrointestinal and common medical conditions, such as acid reflux or side effects of NSAIDs. As a result, many patients with epiphrenic esophageal diverticulum are diagnosed late, which can lead to further complications, such as “gastrointestinal bleeding, aspiration pneumonia or cancer” (Conklin et al., 2009).
The incidence of cancer in patients with epiphrenic esophageal diverticulum is around 0.3% to 3%, and it is often at an advanced stage when discovered (Conklin et al., 2009; also see: [Hjern et al., 2015](https://academic.oup.com/bjs/article-abstract/102/1/119/6136641)). According to Constantin et al. (2023), there is also the [risk of developing esophageal cancer](https://jtd.amegroups.org/article/view/71937/html), around 10 years after symptomatic esophageal diverticulum.
### Some Other Characteristics of Epiphrenic Esophageal Diverticulum
[According to Constantin et al. (2023)](https://jtd.amegroups.org/article/view/71937/html) there is “no correlation between size and retentive character” for epiphrenic esophageal diverticulum in particular. That means that food and liquid can get stuck regardless of the size of the epiphrenic esophageal diverticulum, to give rise to symptoms.
In addition, “one of the early signs of food stasis in a pharyngeal-ED \[esophageal diverticulum\] is the appearance of hydro aerial noises when ingesting fluids”. As a result of food stasis, sialorrhea (hypersalivation) occurs (Constantin et al., 2023).
After reading that, I wondered if my drooling at night is a consequence of the epiphrenic esophageal diverticula. But as I need to wear a mouthguard for bruxism and TMJ disorder issues as well, I suppose it could be multifactorial.
Pin to Your Epiphrenic Esophageal Diverticulum & Rare Disease Boards:
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## Confirmation of My Epiphrenic Esophageal Diverticulum Diagnosis - a Barium Swallow Test
After the incidental finding of the epiphrenic esophageal diverticulum, I was scheduled for a barium swallow test. This is [one of the more definitive tests for esophageal diverticulum](https://www.sciencedirect.com/science/article/abs/pii/S1043067920302720), and also certain motility disorders such as achalasia (Sudarshan et al., 2021).
I was made to drink a chalky liquid at intervals, as the medical team watched and timed the flow under [fluoroscopy](https://medlineplus.gov/lab-tests/fluoroscopy/) (a type of x-ray that shows the movement of organs in real-time) (National Library of Medicine, 2024). The mixture tasted quite nice to me, a bit like yoghurt, but don’t take my word for it as the technician said that no one else likes it. The doctors’ biggest concern was achalasia, which the team decided that I did not have based on the test. They were also able to measure the size of the diverticula and gather other information from the barium swallow test.
## Other Essential Preoperative Tests for Epiphrenic Esophageal Diverticulum
I will need to get surgery done in my surgeon’s opinion. Whilst it’s a fairly high-risk surgery, I am going to agree with him, as the symptoms are becoming unbearable and interferes with my life every day. Some preoperative tests will need to be done, namely an upper endoscopy and manometry.
Whilst the surgeon has said that the manometry might not be necessary since we’ll need to do a fundoplication (an anti-reflux procedure) during the Heller’s myotomy (surgery) regardless, I insist upon it. This is because epiphrenic esophageal diverticulum mostly stems from a motility disorder, so it is best to treat the underlying cause if so. Whilst the fundoplication might treat any existing motility disorder, I think it’s best to actually know what the disorder is, if there is indeed one.
According to Alicuben et al. (2023), “failure to identify and treat the underlying motility disorder during diverticulum resection has been associated with [high rates of recurrence and leak along the staple line](https://books.google.com.sg/books?hl=en&lr=&id=xmGvEAAAQBAJ&oi=fnd&pg=PP23&dq=epiphrenic+esophageal+diverticulum&ots=0o4vbaWSoF&sig=hs-aOtti78ZTa5oPhaaZbuFSsW4&redir%5Fesc=y#v=onepage&q=epiphrenic%20esophageal%20diverticulum&f=false) in the range of 10% to 20%.” They also state that, “specifically, failure to perform an adequate myotomy in such patients has yielded leak rates exceeding 25% when diverticulectomy alone is performed”.
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- [An Experience from Hell: Pulmonary Embolism, DVTs & Antiphospholipid Syndrome](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)
## General Symptom Management for Epiphrenic Esophageal Diverticulum
As mentioned, there is no medication to help with symptom relief, and the doctors don’t have much clue about it either. The advice I was given by the gastroenterologist was rather generic, and there aren’t many tips online either. The closest I have found for managing epiphrenic esophageal diverticulum are general esophageal soft food diet tips.
A list of [esophageal soft food diet tips can be found on the Cedars Sinai (2018) website](https://www.cedars-sinai.org/blog/esophageal-soft-diet-guidelines.html), and includes: eating slowly in small amounts, chewing thoroughly, drinking fluids whilst eating to flush the food down, sitting upright whilst eating and up to 60 minutes after, avoiding food 3 hours before sleeping, avoiding caffeinated beverages, avoiding tough meats, abrasive foods and breads with chewy textures, and to stop eating when you start to feel satiated. This is pretty much what the gastroenterologist has advised me to do for symptom management of my epiphrenic esophageal diverticula.
You may or may not have trouble digesting food in and of itself with epiphrenic esophageal diverticulum. However, many of the symptoms mimic those of esophageal cancer or a motility disorder. Thus, many of the symptom management tips closely resemble these diseases. It also largely depends on your personal symptoms, how and when it affects you. For instance, regurgitation whilst sleeping is my biggest symptom, so my management plan might look different from yours, if you mostly get dysphagia instead.
Dietary changes and eating times are primary ones, however. According to Yam et al. (2023), “if patients are not surgical candidates, then [management with diet changes](https://www.ncbi.nlm.nih.gov/books/NBK532858/) such as eating bland food and drinking water after every bite to help flush any food out of the diverticulum is recommended”.
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## How I’m Personally Managing My Epiphrenic Esophageal Diverticulum Symptoms
It’s been a lot of trial and error for me, personally. I have a rough idea of which types of food cause the most damage, having learned the painful way. By sharing these personal experiences, I hope that it saves you some pain.
There are also a few things I want to try but have yet to do them regularly, so I’ll update the post after I’ve experimented with them a bit more. One thing I’d like to try is stretching to aid with digestion, and make it a nightly routine. It seems safe and simple enough to try and implement.
### Dietary & Lifestyle Changes
I rarely eat at regular timings, so I’m trying to work on that. I think it’s helped a little, mainly because there is less acid reflux, which can also contribute to irritation along the digestive tract - which includes the esophagus.
The most painful episode for me so far was eating a bag of risotto chips at night, because I thought that rice crackers would be less abrasive and easier to digest than potato or corn chips. I was proved so terribly wrong, as I was up all night coughing and vomiting every 2 hours, and even the entire day after as well. I now have a phobia of anything crunchy, and avoid them especially at night.
#### **Food Textures Matter a Great Deal**
I’ve found that foods that are either crunchy or flaky to be the worst, and also anything with lots of ‘specks’ in it, such as black peppercorns.
I probably don’t have to explain ‘crunchy’ to you - stuff like crisps, deep-fried chicken and certain cereals. ‘Flaky’ includes bread, sugary candies like [soan papdi](https://www.amazon.com/dp/B00CH4CPVE?&linkCode=ll1&tag=achronicvoice-20&linkId=561ca9489ba72005e8e9bb74e3b2af07&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl) (which I love), ginger slices, and basically anything that can be broken down into strips, if that makes sense.
Bread, especially sliced bread with lots of ‘air pockets’ tends to be the worst. This is because they get chewed up into tiny specks that ultimately become trapped in the pouches of the esophageal diverticula. I can feel them tickle at my throat, begging to be spat out. And when they refuse to budge, my body reacts and expels them via vomiting.
The suggestion to ‘eat bland food’ does not appeal to me in the least bit, because I have also developed a phobia after only eating bland food for months on end whenever hospitalised. I call it ‘sick people food’, and the thought makes me depressed. However, the pain and discomfort from the esophageal diverticula means that sometimes, that’s worth the sacrifice.
#### **Avoid Supper at All Costs, if Possible**
My sleeping hours are very irregular, as one night of painsomnia can trigger a domino effect for days. So I tend to eat supper, especially if I hadn’t had much to eat earlier on in the day. Whilst the gastroenterologist did say not to eat 2 hours before sleeping, I find that I need to avoid eating right after dinner. It was difficult at first, because my body had been primed to want to eat at night. It’s much better now though. That little change does make a rather big difference.
I did try drinking fruit juice at night as I thought it was categorised as a ‘liquid diet’, but that didn’t work out too well for me at all. The fibre from the fruits tend to be like ‘strings’, so those get trapped in the esophageal diverticula pouches, too. According to Marcin (2024), such fruits are hard to digest because [fibre “isn’t digested by your body”](https://www.healthline.com/health/easy-to-digest-foods). Whilst the esophagus is technically before the digestive juices start their action, I guess this rule applies too, but in a different way. I’m learning as I go along.
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### Foods That are Fine for My Epiphrenic Esophageal Diverticulum
For more substantial meals, soups and stews (including stewed meat and vegetables), work best for me so far. As stews are boiled for a long period of time, this helps to break the food product down partially. In a gross metaphorical sense, they’ve been ‘pre-chewed’ a little to make things easier for you.
I eat less white rice than the average Asian, as it makes me feel quite bloated if I have too much of it. It is still a staple, and apart from bloating, doesn’t cause too much distress. I suppose that’s because they’ve been dehusked and are cooked, making them soft and less fibrous. Noodles and pasta are also okay in general, as once again, I guess it’s because they’ve been cooked at high temperatures.
Other foods I can tolerate with the epiphrenic esophageal diverticulum are: mashed potatoes, eggs, fish, spreads (like jams and compotes), any cooked meat or vegetable, and yoghurt. Things that are okay on the ‘naughty’ food list for me include: ice cream, marshmallow, bingsu (Korean shaved ice dessert), sorbet, jelly and custard.
### Foods That Cause Pain for My Epiphrenic Esophageal Diverticulum
Foods that cause me the most pain, in hierarchical order, include: crisps/chips, sliced bread, cookies and biscuits, and high-fibre fruits. Whilst some of these foods can be quite plain, remember that it isn’t so much that your stomach has trouble digesting them. Rather, the pouches from the esophageal diverticula trap some food products more so than others. The time of consumption matters as well. So if I want to try my luck eating one of these food items, it’s safer to try it as early on in the day as possible.
Northwest Minimally Invasive Surgery (2021) has an information page for patients who have had esophageal or stomach surgery, but the advice is pretty relevant for epiphrenic esophageal diverticulum, too. They state that “it is important that foods consumed be smooth in texture to facilitate the movement of food through the swollen areas of the esophagus or stomach. Bread products that can expand with fluid are avoided entirely”. They also have a [list of foods allowed and foods to avoid](https://www.northwestmis.com/procedure/esophageal-and-stomach/esophageal-soft-food-diet/) that makes total sense to me. The list is similar on the [Cedars Sinai (2018) blog about esophageal dietary guidelines](https://www.cedars-sinai.org/blog/esophageal-soft-diet-guidelines.html) as well.
### Experimenting with Supplements & Medications for Symptom Relief
I was suffering from two days of bloatedness and regurgitation a while back, and just randomly thought I’d try some magnesium. The justification being that [magnesium is an essential mineral](https://onlinelibrary.wiley.com/doi/10.1155/2018/9041694) for the proper functioning of over 300 enzymes in the body, which includes muscle relaxation and digestion (Al Alawi et al., 2018).
I took a magnesium carbonate effervescent tablet, and was amazed to find that it helped to relieve the epiphrenic esophageal diverticulum symptoms a fair bit. I’m not sure how the esophagus is associated, but hey, it helped with some relief from two days of discomfort. Placebo or not, I’ll take it as a win, and something to add to my pain management toolkit. (I personally like the range of [effervescent tablets from Voost](https://www.amazon.com/dp/B09RP5FVZV?&linkCode=ll1&tag=achronicvoice-20&linkId=a4066a24deef7e52bf8aa203eaf41cc9&language=en%5FUS&ref%5F=as%5Fli%5Fss%5Ftl).)
However, do note that this ‘trick’ isn’t fail-proof. Half the time it doesn’t work and I still wake up coughing and regurgitating. So I guess the magnesium simply aids with digestion and relaxation in general, which probably has an indirect effect on my body overall.
Interestingly, I did a search about it the next day, and found that magnesium supposedly helps some people who have achalasia. I couldn’t find any papers for it though, as esophageal diverticulum is a rare disease. [Healthline has a list of the different types of magnesium supplements](https://www.healthline.com/nutrition/magnesium-types), which is interesting general knowledge (Hill, 2023).
Cough syrup also surprisingly seems to help with the non-stop coughing, even though it’s irritation from the esophagus, instead of the trachea/windpipe. I suppose it suppresses the urge to cough regardless? Having said that, both my parents are having an extremely bad cold and cough at the moment, so perhaps I’ve caught the bug, too. I’ll wait for a couple more weeks before concluding on the cough syrup relief.
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- [Vitamin D & Vitamin K2: How They Boost Each Other in the Body](https://achronicvoice.com/vitamin-d-vitamin-k2/)
- [The Causes & Dangers of Malabsorption & An Easy Way to Get Your Nutrients](https://achronicvoice.com/causes-dangers-malabsorption-get-nutrients/)
- [The Lowdown on Medications and Antiphospholipid Syndrome (Warfarin, Enoxaparin, DOACs, NSAIDs & More)](https://achronicvoice.com/medications-and-antiphospholipid-syndrome/)
- [Physiotherapy After Knee Operation](https://achronicvoice.com/physiotherapy-after-knee-operation/)
- [Is Yoga Accessible for People with Chronic Illness?](https://achronicvoice.com/accessible-yoga-chronic-illness/)
## Conclusion on My Personal Experiences with Epiphrenic Esophageal Diverticulum
In sum, epiphrenic esophageal diverticulum is an extremely rare disease with limited research comparatively, so symptom and pain management are mostly through trial and error. Whilst it is not deadly in and of itself unless something rare happens (such as a rupture that will not stop bleeding), it tends to worsen over time. There is also a very small risk of esophageal cancer further down the road. It has definitely ruined my quality of life, especially with the regurgitation whilst sleeping at night. The dietary and lifestyle changes are annoying, because managing my other chronic illnesses is demanding enough.
Whilst I am certainly not looking forward to yet another high-risk surgery in a relatively short span of time, I really hope that I feel better after I recover from it. I’ve read a few Reddit threads on other patients’ experiences with Heller myotomy and fundoplication surgeries, and some of the aftereffects sound really painful and scary. But I guess I don’t really have much of a choice, do I?
If you’ve never had surgery or been chronically ill - the [**healing process is actually the worst**](https://achronicvoice.com/road-to-recovery-longest/), only because it’s the most boring, painful and helpless period. All you can do is wait for the pain to subside and the wounds to close, which can take months and sometimes, years. But I guess, hope for symptom relief is what keeps me, and others like me, going.
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Read Related Posts:
- [Learn More About the Super Rare Disease – Esophageal Diverticulum](https://achronicvoice.com/rare-disease-esophageal-diverticulum/)
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- [Fun Things To Do While Recovering From Surgery: Hobbies, Crafts & Games](https://achronicvoice.com/fun-things-to-do-while-recovering-from-surgery/)
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### References:
- Abdollahimohammad, A., Masinaeinezhad, N., & Firouzkouhi, M. (2014). Epiphrenic esophageal diverticula. *Journal of Research in Medical Sciences : The Official Journal of Isfahan University of Medical Sciences, 19*(8), 795–797\. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4235103/
- Al Alawi, A. M., Majoni, S. W., & Falhammar, H. (2018). Magnesium and Human Health: Perspectives and Research Directions. *International Journal of Endocrinology, 2018*, 9041694\. https://doi.org/10.1155/2018/9041694
- Alicuben, E. T., Luketich, J. D., & Levy, R. M. (2023). Epiphrenic Diverticulum. In Pryor, A. D. & Hawn, M. T. (Eds), *Operative Techniques in Foregut Surgery (2nd ed.), 1*. Wolters Kluwer Health. Retrieved from https://books.google.com.sg/books?id=xmGvEAAAQBAJ
- Cedars-Sinai. (2018, May 30). *Esophageal Soft Food Diet Guidelines*. Cedars-Sinai. https://www.cedars-sinai.org/blog/esophageal-soft-diet-guidelines.html
- Conklin, J. H., Singh, D., & Katlic, M. R. (2009). Epiphrenic Esophageal Diverticula: Spectrum of Symptoms and Consequences. *Journal of Osteopathic Medicine, 109*(10), 543–545\. https://doi.org/10.7556/jaoa.2009.109.10.543
- Constantin, A., Constantinoiu, S., Achim, F., Socea, B., Costea, D. O., & Predescu, D. (2023). Esophageal diverticula: From diagnosis to therapeutic management—narrative review. *Journal of Thoracic Disease, 15*(2), 759–779\. https://doi.org/10.21037/jtd-22-861
- Hill, A. (2023, May 11). *10 Types of Magnesium (and What to Use Each For)*. Healthline. https://www.healthline.com/nutrition/magnesium-types
- Hjern, F., Mahmood, M. W., Abraham-Nordling, M., Wolk, A., & Håkansson, N. (2015). Cohort study of corticosteroid use and risk of hospital admission for diverticular disease. *British Journal of Surgery, 102*(1), 119–124\. https://doi.org/10.1002/bjs.9686
- Marcin, A. (2024, March 25). *What Foods Are Easy to Digest?* Healthline. https://www.healthline.com/health/easy-to-digest-foods
- National Library of Medicine. (2024, August 27). *Fluoroscopy*. MedlinePlus. https://medlineplus.gov/lab-tests/fluoroscopy/
- Northwest Minimally Invasive Surgery. (2021, April 20). *Esophageal Soft Food Diet*. https://www.northwestmis.com/procedure/esophageal-and-stomach/esophageal-soft-food-diet/
- Sato, Y., Tanaka, Y., Ohno, S., Endo, M., Okumura, N., Takahashi, T., & Matsuhashi, N. (2023). Optimal surgical approaches for esophageal epiphrenic diverticulum: Literature review and our experience. *Clinical Journal of Gastroenterology, 16*(3), 317–324\. https://doi.org/10.1007/s12328-023-01765-2
- Sudarshan, M., Fort, M. W., Barlow, J. M., Allen, M. S., Ravi, K., Nichols, F., Cassivi, S. D., Wigle, D. A., Shen, R. K., & Blackmon, S. H. (2021). Management of Epiphrenic Diverticula and Short-term Outcomes. *Seminars in Thoracic and Cardiovascular Surgery, 33*(1), 242–246\. https://doi.org/10.1053/j.semtcvs.2020.08.017
- Whitten, C. (2024, February 20). *What to Know About Esophageal Diverticulum*. WebMD. https://www.webmd.com/digestive-disorders/esophageal-diverticulum
- Yam, J., Baldwin, D. L., & Ahmad, S. A. (2023, April 24). Esophageal Diverticula. In *StatPearls \[Internet\]*. StatPearls Publishing. http://www.ncbi.nlm.nih.gov/books/NBK532858/
### Comments Archives:
Comments imported from previous WordPress site.
- [ Sue Jackson ](https://livewithcfs.blogspot.com/) Apr 17, 2025
Wow, Sheryl — this sounds just awful. Your diagnoses just keep piling up! And through it all, you have such a positive attitude and just keep learning and teaching others. I’m sorry you’re going through all this. I hope both surgeries are successful and bring you some relief (and don’t knock you down for too long).
Sue
[Live with ME/CFS](https://livewithcfs.blogspot.com/)
- [ Sheryl Chan ](https://www.achronicvoice.com/) Apr 17, 2025
Hi Sue, thank you for reading and checking in — I appreciate it 🙂 Yes, I think you know the drill, as someone who’s chronically ill too lol. They’re really eager to pile up, aren’t they?! Sending gentle hugs and hope you’ve been well too. Wishing you many more road trips to come!
**Start a new conversation in the Member Comments below!**
### Learn More About the Super Rare Disease — Esophageal Diverticulum
URL: https://achronicvoice.com/rare-disease-esophageal-diverticulum/
Last updated: 2026-04-30T17:37:44.000Z
## Why am I Writing About the Rare Disease, Esophageal Diverticulum?
The short answer is because I was recently diagnosed with it, although symptoms have been accumulating for some time now. I had simply assumed that all the regurgitation and vomiting, even in the middle of the night, were due to acid reflux.
If not for an admission to the A&E/ER for something completely unrelated, the doctors would never have found it. The esophageal diverticulum was an incidental finding after I did a CT scan. According to Constantin et al. (2023), “[somewhere between 0.06 - 4% \[of epiphrenic esophageal diverticulum\] are discovered incidentally](https://jtd.amegroups.org/article/view/71937/html), radiologically”.
Anyway, I have decided to split this into a two part series. You can [**read about my personal experiences with epiphrenic esophageal diverticulum in this post**](https://achronicvoice.com/epiphrenic-esophageal-diverticulum-personal-experiences-tips/), which details my struggles with it, and also things I’ve done to try and manage it. This post will focus entirely on research I’ve done thus far, as a patient.
*\*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. *I am not a doctor, and nothing in this article should be substituted for medical advice.* Please consult your own doctor before changing or adding *any* new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our* [***Privacy Policy***](https://achronicvoice.com/privacy-policy/)*page for more information. Thank you!*
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## A Brief Look at the Esophagus / Oesophagus
In order to understand what certain terms mean and the implications of the different types of esophageal diverticulum, we first need to understand a bit about how the esophagus works. The [esophagus](https://my.clevelandclinic.org/health/body/21728-esophagus) is the “hollow, muscular tube that carries food and liquid from your throat to your stomach”, and is part of your digestive system (Cleveland Clinic, 2021b). It is approximately 9 to 10 inches long (23 to 25 cm).
The [esophagus itself is made up of four layers](https://www.ncbi.nlm.nih.gov/books/NBK532858/) \- the mucosa, submucosa, muscularis and adventitia (Yam et al., 2023), and can be [divided into three anatomical segments](https://www.ncbi.nlm.nih.gov/books/NBK482513/) \- cervical, thoracic and abdominal (Chaudhry & Bordoni, 2023).
### Peristalsis
The main function of the esophagus is to transport food from the mouth to stomach, and it does that through a series of muscular contractions known as [peristalsis](https://my.clevelandclinic.org/health/body/22892-peristalsis), which is an automatic wave-like movement that happens within the digestive tract (Chaudhry & Bordoni, 2023; Cleveland Clinic, 2022).
[According to Nehra et al. (2022)](https://pubs.rsna.org/doi/full/10.1148/rg.220052), “the proximal one-third of the esophagus is composed of striated muscle, the distal one-third is composed of smooth muscle, and the middle one-third contains a mixture of striated and smooth muscle”.
Peristalsis in the different muscle types is controlled by different types of neuronal activity. The lower esophageal sphincter is also made up of smooth muscle segments. This allows for the smooth passing of food into the stomach, and also prevents gastroesophageal reflux (Nehra et al., 2022).
Some other keywords in relation to the esophagus are:
- **Esophageal lumen** \- the inside of the esophagus
- **Esophageal sphincter** \- a ring-shaped muscle that contracts and expands
- [**Mediastinum**](https://my.clevelandclinic.org/health/body/24113-mediastinum) \- The centre area of the chest between the lungs, where the esophagus, heart, thymus, trachea and other structures can be found (Cleveland Clinic, 2022b)
## What is Esophageal Diverticulum?
[Esophageal diverticulum is a rare disease](https://www.ncbi.nlm.nih.gov/books/NBK532858/) with a prevalence of less than 1% globally (Yam et al., 2023). Patients with esophageal diverticulum have an outpouching within the esophagus, and the disorder is categorised based on anatomical location and type. ‘Diverticula’ is the plural term, where there are more than one diverticulum.
### Esophageal Diverticulum Based on Anatomical Location
There are primarily [three types of esophageal diverticula](https://jtd.amegroups.org/article/view/71937/html) \- Zenker’s, mid-esophageal and epiphrenic, running from top to bottom of the esophagus (Constantin et al., 2023).
[Within the pharyngoesophageal space](https://surgicalcasereports.springeropen.com/articles/10.1186/s40792-023-01599-7), they can be further categorised as - Zenker’s, Killian-Jamieson and Laimer’s, once again based on where they occur (Watanabe et al., 2023). Here is a great [illustration that shows the differences between these three types of diverticulum](https://www.researchgate.net/figure/Anatomy-of-the-hypopharynx-Killian-Jamieson-space-and-its-relation-to-the-recurrent%5Ffig1%5F342651751), from a left lateral and posterior view (Zakaria & Barawi, 2020).
Then there is also a diffuse type, known as “diffuse intramural pseudodiverticulosis” (DEIPD) (Constantin et al., 2023), which is a “[chronic, fibrosing inflammatory disease](https://onlinelibrary.wiley.com/doi/10.1002/jgh3.12750)” (Hentschel, 2022). Iatrogenic diverticulum has also been added as a category recently. As its name suggests, it happens post treatment - peroral endoscopic myotomy (POEM)-type endoscopic therapy, in this instance. Such treatments are often used for late complications of achalasia (a swallowing disorder) (Constantin et al., 2023).
Whilst esophageal diverticulum is a rare disease, the most common tends to be Zenker’s diverticulum - the one that occurs at the top of the esophagus. Esophageal diverticula are also more commonly found in the elderly, and in men as opposed to women (Yam et al., 2023), so I guess that makes me one lucky dark unicorn again.
### Esophageal Diverticulum by Type
There are [two ways that an esophageal diverticulum forms](https://my.clevelandclinic.org/health/diseases/16977-esophageal-diverticulum) \- pulsion or traction, with the former being more common. ‘Pulsion’ simply means pushing, whilst ‘traction’ means pulling. Therefore, pulsion diverticula push against the esophageal wall, whereas traction diverticula are ‘sucked in’, which lead to the formation of indentations in the esophageal wall (Cleveland Clinic, 2023).
[According to Sato et al. (2019)](https://www.wjgnet.com/1007-9327/full/v25/i12/1457.htm), pulsion esophageal diverticula form due to “inadequate relaxation of either the upper esophageal sphincter (UES) or the lower esophageal sphincter (LES), causing an increase of intraluminal pressure resulting in a herniation of the esophageal wall in an area of low parietal resistance”. Traction esophageal diverticula on the other hand, involves “adhesion and traction on the esophageal wall in the presence of a mediastinal inflammatory focus, resulting in the formation of a diverticular pouch”.
To simplify that explanation, a pulsion esophageal diverticulum is due to pressure within the esophagus. This leads to an abnormal bulge in the weaker areas of the esophageal wall. Traction esophageal diverticulum on the other hand, is caused by inflammation within the mediastinum. This pulling effect leads to the formation of pouches within the esophagus.
#### **True Versus False Diverticula**
Esophageal diverticulum can be further classified as either ‘true’ or ‘false’. According to Yam et al. (2023), true diverticula involve all four layers of the esophageal wall, whereas only the mucosa and submucosa layers are involved in false diverticula.
True diverticula are caused by traction (pulling), whilst false diverticula by pulsion (pushing). In general, Zenker’s and epiphrenic diverticula are false diverticula, whilst mid-esophageal diverticula are true diverticula.
### Some Charts for Easier Digestion (Pun Not Quite Intended)
You can [view the correlation between esophageal typography, anatomo-clinical criteria and etiopathogeny in Table 2 here](https://pmc.ncbi.nlm.nih.gov/articles/PMC9992562/#t2) (Constantin et al., 2023).
Figure 1 in this paper by Sudarshan and Murthy (2021) also provides an excellent [summary of the three main types of esophageal diverticula](https://journals.sagepub.com/doi/abs/10.1177/26345161211045613). It includes their varying pathophysiology, presentations, work-up and management for easy comparison.
Finally, you can [view some images of how various esophageal diverticula look like on Radiopaedia](https://radiopaedia.org/articles/epiphrenic-diverticulum) (Rezaee, 2024).
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## Esophageal Diverticulum Symptoms - From Mild to Severe
According to Sato et al. (2023), the [main symptoms of esophageal diverticulum](https://link.springer.com/article/10.1007/s12328-023-01765-2) are “dysphagia, regurgitation, weight loss, heartburn, respiratory complaints, and retrosternal pain when swallowing food”.
The ‘milder’ symptoms of esophageal diverticulum include an irritating sensation in the throat as if something is stuck there, a sore throat and halitosis (bad breath). As the diverticulum increases in size over time, it [can lead to other complications as food gets stuck in the pouches](https://link.springer.com/article/10.1007/s12328-023-01765-2). For instance, patients can get “esophagitis, bleeding from ulceration, impaction, and stasis with regurgitation” (Sato et al., 2023).
[Aspiration pneumonia](https://www.ncbi.nlm.nih.gov/books/NBK470459/) can also happen especially when a person is asleep, where regurgitated food gets inhaled into the lungs and becomes infected. Apart from gastric content, the aspirated fluid can also consist of oropharyngeal secretions and particulate matter (Sanivarapu et al., 2024).
Aspiration pneumonia is also one of my biggest fears, as regurgitation at night is one of my main symptoms. According to Thomas et al. (2001), other [serious manifestations of esophageal diverticulum](https://bjssjournals.onlinelibrary.wiley.com/doi/abs/10.1046/j.1365-2168.2001.01733.x) include: “acute dyspnoea and stridor from pulmonary displacement, cardiac tachydysrhythmias from atrial compression and diverticular rupture, and, rarely, tension pneumothorax”.
In sum, esophageal diverticulum can potentially affect your heart, lungs, and their surrounding structures, due to pressure and/or rupture. It can also give rise to heart rhythm issues.
Whilst the formation of ulcers rarely leads to perforation or bleeding, such events can be life-threatening if they do happen. In addition, atypical symptoms of esophageal diverticulum may remain unknown until surgery is being done (Thomas et al., 2001).
Read Related Posts:
- [Dysphagia & Swallowing Problems (and How Oral Vitamin Sprays Can be of Help to You)](https://achronicvoice.com/dysphagia-oral-vitamin-sprays/)
- [How Does Antiphospholipid Syndrome Affect The Body? (Beyond the Blood to Major Organs)](https://achronicvoice.com/how-does-antiphospholipid-syndrome-affect-the-body/)
- [An Experience from Hell: Pulmonary Embolism, DVTs & Antiphospholipid Syndrome](https://achronicvoice.com/pulmonary-embolism-dvts-antiphospholipid-syndrome/)
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- [What’s it Like to Live with a Heart Rhythm Disorder?](https://achronicvoice.com/heart-rhythm-disorder/)
## Diagnosing Esophageal Diverticulum
After that incidental finding of the esophageal diverticula from the CT scan, I had to go for a barium swallow test. The surgeon has also mentioned that I will need to do a manometry and endoscopy as pre-operative procedures.
This is in line with what I have read up thus far within the medical literature. According to Herbella and Patti (2012), the [preoperative workup for esophageal diverticulum treatment](https://link.springer.com/article/10.1007/s00423-011-0843-2) includes: a barium swallow test, endoscopy, manometry, and pH monitoring if deemed necessary (also see: [Thomas et al., 2001](https://bjssjournals.onlinelibrary.wiley.com/doi/abs/10.1046/j.1365-2168.2001.01733.x)).
Let’s take a look at these tests used to diagnose esophageal diverticulum and motility disorders, to better understand why they’re important.
### Barium Swallow Test
In order to clearly see and define the esophageal diverticulum, a [barium swallow test](https://medlineplus.gov/lab-tests/barium-swallow/) (esophagram) (National Library of Medicine \[NLM\], 2024a) is usually carried out first. The patient will be made to drink a chalky liquid at intervals. This helps with the visualisation of the diverticulum by ‘highlighting’ it under [fluoroscopy](https://medlineplus.gov/lab-tests/fluoroscopy/), which is a type of x-ray that shows the movement of organs in real-time (NLM, 2024b). From the test, your medical team will then be able to [determine the size and location of the diverticulum](https://www.sciencedirect.com/science/article/abs/pii/S1043067920302720), and also if they are on the right or left side of the esophagus (Sudarshan et al., 2021).
The information from the barium swallow test is important for determining the course of treatment, and type of surgical method to use. In general, surgery is avoided for asymptomatic patients due to the risks, although some surgeons think that it is still essential, as up to 45% of patients demonstrated aspiration (Sudarshan et al., 2021). Some also think surgery is necessary, due to the “[risk of cancerization of the diverticulum mucosa or spontaneous rupture](https://link.springer.com/article/10.1007/s12328-023-01765-2)” (Sato et al., 2023).
In addition, a [timed barium swallow test is able to detect certain motility disorders](https://journals.sagepub.com/doi/abs/10.1177/26345161211045613) such as achalasia, as well as “associated conditions such as dysmotility, hiatal hernia, distal esophageal rings, and reflux” (Sudarshan & Murthy, 2021).
### Esophageal Manometry
According to Gyawali et al. (2020), “[esophageal manometry](https://journals.lww.com/ajg/fulltext/2020/09000/acg%5Fclinical%5Fguidelines%5F%5Fclinical%5Fuse%5Fof.19.aspx) is generally considered the gold standard for the diagnosis of motility disorders”. It is important to get this diagnostic test done especially for epiphrenic esophageal diverticula, as [these are often due to an esophageal motility disorder](https://books.google.com.sg/books?id=xmGvEAAAQBAJ&printsec=frontcover&source=gbs%5Fge%5Fsummary%5Fr&cad=0#v=onepage&q&f=false), such as achalasia or diffuse esophageal spasm (Alicuben et al., 2023).
The word “[manometry](https://my.clevelandclinic.org/health/diagnostics/4952-esophageal-manometry-test)” simply means a measurement of pressure. A tube will be placed down your nasal cavity and into your esophagus. Thereafter, you will be made to swallow water and/or other liquids of different consistencies, in various bodily positions (Cleveland Clinic, 2023).
A [high-resolution manometry is usually recommended](https://www.wjgnet.com/1007-9327/full/v25/i12/1457.htm), based on the latest research (Sato et al., 2019). The [difference between a regular and high-resolution manometry](https://pmc.ncbi.nlm.nih.gov/articles/PMC5439137/) is that the latter uses more catheters (36 as opposed to 5), thus producing more accurate results (Yadlapati, 2017).
### Upper Endoscopy (Esophagogastroduodenoscopy)
A [preoperative upper endoscopy is essential](https://books.google.com.sg/books?hl=en&lr=&id=xmGvEAAAQBAJ&oi=fnd&pg=PP23&dq=epiphrenic+esophageal+diverticulum&ots=0o4vbaWSoF&sig=hs-aOtti78ZTa5oPhaaZbuFSsW4&redir%5Fesc=y#v=onepage&q=epiphrenic%20esophageal%20diverticulum&f=false) for several reasons. First, to rule out other possible diseases (such as Barrett’s esophagus) or malignancies (cancers), and also to clear any debris stuck in the diverticula before surgery is done (Alicuben et al., 2023; Herbella & Patti, 2012).
## The Importance of Differential Diagnosis and Detection of Motility Disorders
There are a number of other disorders that can mimic an esophageal diverticulum, and vice versa. A [differential diagnosis](https://medlineplus.gov/lab-tests/differential-diagnosis/) is essential to rule out such cases. This is simply a process that takes into account all possible diagnoses based on your individual symptoms, medical history, lifestyle and more (NLM, 2023). Additional tests may be done if deemed necessary. This helps your medical team to conclude with a more definitive diagnosis, and therefore, the treatment course to take.
For epiphrenic esophageal diverticulum, the [differential diagnosis](https://books.google.com.sg/books?hl=en&lr=&id=xmGvEAAAQBAJ&oi=fnd&pg=PP23&dq=epiphrenic+esophageal+diverticulum&ots=0o4vbaWSoF&sig=hs-aOtti78ZTa5oPhaaZbuFSsW4&redir%5Fesc=y#v=onepage&q=epiphrenic%20esophageal%20diverticulum&f=false) includes: “hiatal hernia, esophageal webs and strictures, esophageal duplication cyst, and esophageal carcinoma”. Other differential diagnosis of underlying causes should also be ruled out as well, such as: “achalasia, distal esophageal spasm, ineffective esophageal motility, esophagogastric junction outflow obstruction, end-stage gastroesophageal (GE) reflux disease with a "burnt out" esophagus, peptic stricture, or failed previous fundoplication” (Alicuben et al., 2023).
Whilst rare, it is also important to screen for malignancies (cancers). The [incidence of malignancies from esophageal diverticula](https://link.springer.com/article/10.1007/s00423-011-0843-2) is 0.3% to 7% for pharyngoesophageal (which includes Zenker’s), 1.8% for midesophageal, and 0.6% for epiphrenic (Herbella & Patti, 2012).
## The Link Between Motility Disorders and Esophageal Diverticulum
As mentioned, motility disorders are often the underlying cause of esophageal diverticulum - particularly so in epiphrenic esophageal diverticulum. In fact, according to Thomas et al. (2001), [one should still “remain suspicious” even if a motility disorder is not detected](https://bjssjournals.onlinelibrary.wiley.com/doi/abs/10.1046/j.1365-2168.2001.01733.x) during medical investigations, as apart from achalasia, most of such disorders “occur intermittently and may not be evident during oesophagoscopy, contrast radiology or standard manometry”.
Studies have also shown that “[more than 75% of epiphrenic diverticula](https://www.wjgnet.com/1007-9327/full/v25/i12/1457.htm) occur concomitantly with esophageal motility disorders” (Sato et al., 2019). In one small study by Nehra et al. (2002), [all their patients with epiphrenic esophageal diverticulum were found to have a motility disorder](https://journals.lww.com/annalsofsurgery/abstract/2002/03000/physiologic%5Fbasis%5Ffor%5Fthe%5Ftreatment%5Fof%5Fepiphrenic.6.aspx), using 24-hour ambulatory motility testing.
### Achalasia - The Most Common Motility Disorder Found in Esophageal Diverticulum
Achalasia has been mentioned numerous times in this post. [Achalasia](https://my.clevelandclinic.org/health/diseases/17534-achalasia) is a rare swallowing disorder that stems from damaged nerves in the esophagus, specifically in the lower esophageal sphincter. As a result, food and liquid are unable to move down to the stomach. How achalasia develops is still unknown, but has been purported to be autoimmune in nature (Cleveland Clinic, 2021a).
There are also [different types of achalasia](https://pmc.ncbi.nlm.nih.gov/articles/PMC5572971/) based on manometric patterns, namely: type 1 (classic), type 2, and type 3 (spastic). Type 1 achalasia has “minimal contractility in the esophageal body”, Type 2 has “intermittent periods of panesophageal pressurization”, and Type 3 has “premature or spastic distal esophageal contractions”. They also vary in immunohistochemical markers and histology (Patel et al., 2017).
Achalasia is also the [most common motility disorder found in patients with esophageal diverticulum](https://link.springer.com/article/10.1007/s00423-011-0843-2) (Herbella & Patti, 2012). However, this is not the case in reverse. [Less than 5% of patients with achalasia develop an epiphrenic esophageal diverticulum](https://bjssjournals.onlinelibrary.wiley.com/doi/abs/10.1046/j.1365-2168.2001.01733.x), with the exception of those with ‘vigorous’ achalasia, as more pulsion forces are involved (Thomas et al., 2001).
### Diffuse Esophageal Spasm and Other Motility Disorders
The second most common motility disorder found in patients with epiphrenic esophageal diverticulum is diffuse esophageal spasm (Herbella and Patti, 2012). [This is characterised by](https://www.ncbi.nlm.nih.gov/books/NBK541106/) “simultaneous, uncoordinated, or rapidly propagated contractions that are of normal amplitude and accompanied by dysphagia”. Once again, differential diagnosis is critical because there is a long list of disorders that resemble it (Goel and Nookala, 2023, July 2).
In [one small study using high-resolution impedance manometry](https://link.springer.com/article/10.1007/s10620-023-08196-6), other motility disorders associated with esophageal diverticulum include, in descending order of occurrence: esophagogastric junction outflow obstruction, jackhammer esophagus, ineffective esophageal motility and absent contraction (Yuan et al., 2024). [Another small study by Carlson et al. (2016)](https://onlinelibrary.wiley.com/doi/abs/10.1111/nmo.12739), which also used high-resolution manometry, revealed “propagating peristalsis, often with hypercontractility” as the predominant motility pattern in their participants.
I would recommend reading [this paper by Nehra et al. (2022), which has some insightful explanations of the different types of motility disorders](https://pubs.rsna.org/doi/full/10.1148/rg.220052). There are tables which detail how they appear on diagnostic tests, their differentiating features, and the recommended examinations and treatments.
It is also important to note that motility disorders can stem from different dysfunctions. For instance, it could arise from an autoimmune disease (e.g. Scleroderma), impaired inhibitory innervation (e.g. distal esophageal spasm), or excessive cholinergic stimulation (e.g. hypercontractile/jackhammer esophagus) (Nehra et al., 2022).
In sum, it is important to be sure that what you have is truly an esophageal diverticulum, as the treatment and management plan can be quite different for each diagnosis. And since a motility disorder is often the underlying cause of epiphrenic esophageal diverticulum, it is important to investigate this further in order to reduce or eliminate the chance of recurrence.
Read Related Posts:
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- [Oral Spray Vitamins: A Quick & Easy Way to Get Your Nutrients with Chronic Illness](https://achronicvoice.com/oral-spray-vitamins/)
- [The Causes & Dangers of Malabsorption & An Easy Way to Get Your Nutrients](https://achronicvoice.com/malabsorption-nutrients/)
- [“It’s in My Blood”: Roy George – A Dramatic Life with a Short Bowel](https://achronicvoice.com/roy-george-dramatic-life-short-bowel/)
- [“It’s in My Blood”: Sarah Frison – A Pastry Chef with a Stomach Disorder](https://achronicvoice.com/sarah-frison-pastry-chef-stomach-disorder/)
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## Esophageal Diverticulum Treatments
According to Varghese et al. (2007), “[optimal surgical treatment is debated](https://www.sciencedirect.com/science/article/abs/pii/S000349750701363X), mortality being 9% in the largest reported surgical series of 33 patients”. That’s not much data to go on. For epiphrenic esophageal diverticulum, the ‘traditional’ methods of treatment include: “transthoracic resection, long esophagomyotomy, and an antireflux procedure”.
I won’t deep-dive into each treatment type here because honestly, I’m probably as clueless as you are. I think I’ve done sufficient research to ask my surgeon the questions I need to ask however, and his answers convince me that he knows what he is doing. So I will share only the treatments that piqued my interest initially, and also what I would personally need.
### Diverticulum Peroral Endoscopic Myotomy (D-POEM)
I had read that [diverticulum peroral endoscopic myotomy](https://link.springer.com/chapter/10.1007/978-981-15-1998-7%5F9) (D-POEM) is becoming more popular as a surgical method for esophageal diverticulum. It is a minimally-invasive procedure with various adaptations, but generally involves steps to create tunnels, dissect and reseal certain parts of the esophagus and its related muscles (Wang et al., 2020).
I was interested in D-POEM, because [studies have shown that it has a high technical and clinical success rate](https://www.sciencedirect.com/science/article/abs/pii/S259003072300079X), and also a low recurrence rate. It is also commonly used to treat achalasia and other motility disorders (Pelton et al., 2024). However, it has [mostly been used for Zenker’s diverticulum](https://www.thieme-connect.de/products/ejournals/abstract/10.1055/a-2127-7402), as compared to other types of diverticula (Mavrogenis & Bazerbachi, 2023).
In any case, I asked my surgeon about it. I didn’t quite understand his explanation of why it wouldn’t make sense to use it. He did say that the surgical treatment that I’d need would be the same regardless of diverticulum type however, which is a Heller myotomy.
### Heller Myotomy and Fundoplication
[Heller myotomy](https://www.uclahealth.org/medical-services/gastro/esophageal-health/tests-treatments/surgical/esophageal-heller-myotomy) is the standard procedure used to treat achalasia, where the lower esophageal sphincter is cut to relieve pressure, so that food and liquid can pass through. Acid reflux can occur after a Heller myotomy, so a partial fundoplication may be done in addition (UCLA Health, n.d.).
A [fundoplication](https://radiopaedia.org/articles/fundoplication) is an anti-reflux surgical procedure, where a “gastric fold is wrapped around the distal esophagus which enforces the lower esophageal sphincter and prevents gastroesophageal reflux”. It can be either full (Nissen) or partial (Toupet, Dor or Thal) (Abdrabou et al., 2022).
A Dor fundoplication takes the frontal approach, whilst a Toupet or Thal fundoplication from the back (Abdrabou et al., 2022). The [most common is a Dor fundoplication](https://www.nm.org/conditions-and-care-areas/treatments/heller-myotomy), where part of the stomach is wrapped over the front of the esophagus and stitched in place. Nissen fundoplication is rarely advised for patients with achalasia, as it can lead to issues with peristalsis (Northwestern Medicine, n.d.).
My surgeon also said that he would probably need to perform the surgery at two entry points, with one incision from near the abdomen. Since my right chest wall has been tunnelled through before in order to repair my mitral valve, a thoracic surgeon will be needed on the surgical team to help ‘navigate’ through the web of adhesions.
According to Torres-Villalobos and Martin-del-Campo (2013), “[myotomy can be safely performed using open abdominal and thoracic approaches](https://onlinelibrary.wiley.com/doi/10.1155/2013/708327), and for more than two decades, it has also been done using laparoscopy and thoracoscopy”. I’m assuming that was what the surgeon meant when he was explaining it to me.
### Potential Surgical Complications
The [rate of symptom relief for esophageal diverticulum](https://link.springer.com/article/10.1007/s00423-011-0843-2) is between 85% to 100%, using standard treatments such as “laparoscopic myotomy, diverticulectomy, and fundoplication”. Having said that, the complication rate for the procedure itself is high (Herbella & Patti, 2012).
Some [complications that can occur post-surgery](https://www.sciencedirect.com/science/article/abs/pii/S0022480413004861) include: “air leaks, septicemia and/or sepsis, mediastinitis, mediastinal empyema with or without fistula, mediastinal abscess, postoperative wound infection, and postoperative hemorrhage” (Onwugbufor et al., 2013).
Leaks are one of the more common complications post surgery, at a rate of up to 23%. My own surgeon has told me that a leak was his biggest concern. The mortality rate for the procedure reaches up to 7% as well (Herbella & Patti, 2012).
Your surgeon will most likely use a combination of procedures in order to treat you, based on several factors. Your individual anatomy needs to be accounted for, as well as the size and position of the esophageal diverticulum, comorbidities and more. Each surgical method has its own risks and merits. For instance, a [left thoracotomy provides good access to an epiphrenic diverticulum](https://link.springer.com/article/10.1007/s00423-011-0843-2), but is also associated with a high morbidity rate (up to 21% of patients had a leak), and a mortality rate of up to 11% (Herbella & Patti, 2012).
Here is a summarised table of [optimal surgical treatments used to treat epiphrenic esophageal diverticulum](https://link.springer.com/article/10.1007/s12328-023-01765-2/tables/2) from 17 published series (Sato et al., 2023).
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## Conclusion - There is Still So Much More to Learn About Esophageal Diverticulum
I hope that this article has given you some insight into the rare disease, esophageal diverticulum. I talked about epiphrenic esophageal diverticulum a little more, as that has a direct impact on me.
Doing research has helped me to cope with the helplessness and numbness I am currently feeling. Whenever I discover a correlation between my symptoms and an explanation from a medical journal, I feel enlightened or triumphant. To say that “knowledge is power” is underrated. Knowledge is healing. And we don’t know enough as it stands.
**[Read About My Personal Experiences with Epiphrenic Esophageal Diverticulum](https://achronicvoice.com/epiphrenic-esophageal-diverticulum-personal-experiences-tips/)**
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### References:
- Abdollahimohammad, A., Masinaeinezhad, N., & Firouzkouhi, M. (2014). Epiphrenic esophageal diverticula. *Journal of Research in Medical Sciences : The Official Journal of Isfahan University of Medical Sciences, 19*(8), 795–797\.
- Abdrabou, A., Kusel, K., & Knipe, H. (2022, April 1). Fundoplication. *Radiopaedia*.
- Alicuben, E. T., Luketich, J. D., & Levy, R. M. (2023). Epiphrenic Diverticulum. In Pryor, A. D. & Hawn, M. T. (Eds), *Operative Techniques in Foregut Surgery (2nd ed.), 1*. Wolters Kluwer Health. Retrieved from
- Carlson, D. A., Gluskin, A. B., Mogni, B., Koo, J., Sood, R., Lin, Z., & Pandolfino, J. E. (2016). Esophageal diverticula are associated with propagating peristalsis: A study utilizing high-resolution manometry. *Neurogastroenterology & Motility, 28*(3), 392–398\.
- Chaudhry, S. R., & Bordoni, B. (2023, July 24). Anatomy, Thorax, Esophagus. In *StatPearls \[Internet\]*. StatPearls Publishing.
- Cleveland Clinic. (2021a, April 6). *Achalasia: A Disorder of the Esophagus*. Cleveland Clinic.
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- Cleveland Clinic. (2022a, April 28). *Peristalsis*. Cleveland Clinic.
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- Cleveland Clinic. (2023a, September 29). *Esophageal Diverticulum*. Cleveland Clinic.
- Cleveland Clinic. (2023b, October 5). *Esophageal Manometry Test*. Cleveland Clinic.
- Constantin, A., Constantinoiu, S., Achim, F., Socea, B., Costea, D. O., & Predescu, D. (2023). Esophageal diverticula: From diagnosis to therapeutic management—narrative review. *Journal of Thoracic Disease, 15*(2), 759–779\.
- Goel, S., & Nookala, V. (2023, July 2). Diffuse Esophageal Spasm. In *StatPearls \[Internet\]*. StatPearls Publishing.