The Frustrations of Invisible Illness
The invisibility of chronic illness makes it incredibly frustrating. We look healthy, yet the pain under our skin can be excruciating. But is pain ever fully invisible? Painkillers mask the evidence of chronic pain somewhat, yet they often provide minimal relief. A body gone rogue is not easy to tame. And taming it requires a surprising element of trust.
*Trigger Warning: This post contains images of blood, needles and flesh. Don't worry, they're not that gruesome ;) But if such images trigger you, please do not continue. Thank you and sending well wishes.
*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. Whilst I have done my utmost 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 page for more information. Thank you!
First Published on: 15 May 2017
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Traces of a Body Gone Rogue
If you pay enough attention, you will notice the little clues of a body gone rogue. Imprints of pain that the owner is trying to conceal, but there's always a little something left behind.
Maybe it's the dark eye bags or bloodshot eyes. The dried, cracked lips, swollen fingers or bloated tummy. You know, the areas of a person's body we generally pay less attention to. We tend to only notice the over all shape of the body or hue of wellness.
Maybe it's that constant look of fatigue, which you've already associated as part of their 'normal' appearance. Or the remnant wounds from scabs that never seem to heal. Maybe you've dissociated those minute actions we repeat; the unconscious rubbing of our belly, squinting, blinking, shaking our wrists. It's there.
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When People Presume You're Just a Cold, Hard Bitch
Sometimes you don't need to use your eyes, but your ears to hear the agony. More often it's about what you don't hear. I tend to withdraw into silence when I'm in pain.
Back in school, friends would often ask what was wrong, whilst other classmates would just assume that I was a cold, arrogant bitch. They thought that I had found the conversation topics boring.
In actual fact, I was concentrating hard on being present despite the amount of pain I was in. The best thing they could do for me was to carry on as per usual, and allow me to participate in my own way.
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Personal Photo Evidence of a Body Gone Rogue
These are little signs that you usually wouldn't notice unless you live with me, or if I bring them up first. There are inconspicuous, until they ruin me enough to be obvious. Often, that is an emergency situation that requires hospitalisation.
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Heartbreaking Hair Loss
My hair was falling out in bunches and clumps every day for a period of time from medications. I was on sodium valproate (Epilim) to control my epilepsy, and this wasn't even supposed to be a 'normal' side effect of the drug.
These pictures do not include all the loose strands scattered and floating around the house. Wherever I went, I left behind some of my hair. It was frustrating to see yet more hair on the ground, right after I had mopped up even!
When I first posted about this to Instagram, some African-American girls rolled their virtual eyes at me and said that this was nothing; that it was their norm. But I'm Asian with stringy, mousy, fine limp hair. So that is indeed, a big bunch, pun intended.
Pesky Head and Brain Inflammation
When I tell people that I have brain inflammation, what I mean is that there are micro haemorrhages in the blood vessels there due to Lupus (SLE).
Sometimes this goes into overdrive and bulge out in swollen lumps all over my skull. My hair hides most of them, but I can’t do anything about the reddish bumps visible on my forehead. They look like rashes, but feel more like bruises. Sometimes they don’t go away for days, and start to give me a headache from a buildup of pressure.
Embarrassing Eye and Lip Inflammation
I had to stop wearing contact lens so frequently due to dry eyes from Sjögren’s Syndrome. No matter how much I moisturised them, it still wasn’t enough. Your eyes can turn red from a lack of moisture; this can range from mild irritation to a persistent pain.
There’s no pill you can take to make it feel better. Here’s what it looks like when the inflammation travels over to the eyes. Lip inflammation is a little more obvious when seen up close in person. I hate having it there as it makes me look like a freak, and I can't conceal it.
Warning Inflammation in my Hands
My hands are a favourite target, and warning signs of an upcoming flare tend to start from there. The swelling is actually three times more painful than it looks in this picture. Put it this way - if someone is able to hide their pain when it is bad, imagine what it must be like when it becomes visible.
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Bleeding that Takes a Day to Staunch
I have a blood clotting disorder called Antiphospholipid Syndrome, and take a blood thinner medication, warfarin, to prevent blood clots.
This 'fix' helps with preventing strokes, heart attacks, DVTs, pulmonary embolisms and other life-threatening medical conditions. But the downside is that my blood is ultra thin, so bleeding from cuts or wounds can take a long time to staunch. Clean cuts are the worst. I've had paper cuts that have taken 24 hours to shut their gaps.
I am aware of the fact that I can bleed to death rather quickly in a major or even minor accident. In fact, I've had several near-death encounters from internal haemorrhages from 'normal' bodily functions, which you can read about in the related posts below.
Abusive-Looking Bruises from Blood Thinners & Pets
As you know by now, I am on blood thinners for APS, which also makes it way too easy for me to get bruises. A light bump, pinch or punch can add a new bruise to the endless collection. I'm often surprised to find a new one hidden somewhere on my body.
Recently with my new puppy, it's been worse as well. He's a bit of a biter and chewer even though his baby teeth have all grown out. And he's got all that sheepdog energy which he happily takes out on me. I mean, look at the pictures and you'll see what I mean. People often ask if I'm being abused.
Ugly Pigment Discolouration from Medication
My shins are covered with a different kind of pigment discolouration, which can sometimes be harder to differentiate to the untrained eye. This is a side effect from taking hydroxychloroquine, which is a staple drug for many people with Lupus and Sjögren's Syndrome due to proven efficacy rates.
Sneaking in a Secret Lie Down in Public
Here’s me at the dentist, curled up on the couch as there was no one else there. I had ground off half a molar tooth (!) from my TMD and bruxism issues the night before. So I had no choice but to be there despite having a terrible day. When I walk out of the dentist's, nobody would even know that I had been in severe pain.
My Daily Medication Cocktail (Not Very Tasty)
I take my medications in three separate doses per day, but I have combined them all for the sake of this article. That’s a total of 21 pills (I actually didn’t know as they keep changing, and counted them just for this post!).
If I look fine to you and appear to be able to function, it’s because I take this many pills per day.
P.s. It's been a few years so that cocktail's changed again. I'll lay out the new mix someday...
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My Life-Saving Enoxaparin Injections & Coaguchek Kit
This is something you’ll only see if you live or travel with me. I love my Coaguchek kit as it provides me with a sense of security. I am able to check my INR (blood clotting time) with a prick of the finger.
Diet is a big cause for fluctuations, and this can be a problem when travelling. If my blood isn't thin enough, then I need to inject myself with Enoxaparin, which is a short-term blood thinner. I also need to switch to these pre-surgeries or during pregnancy, if ever.
Glaring Criminal Evidence in My Bedside Drawer & My Mini Pharmacy
Not very smart. Tons of pills for all sorts of purposes scattered everywhere. Common ones more accessible in the upper drawer, and less used ones below. Sometimes scattered on the table for emergency purposes. Always a bottle of water in case I need to swallow some pills.
Antihistamines for urticaria/hives and itching. Painkillers for all sorts of chronic pains. NSAID pain patches for inflammed joints and muscles. Calcium channel blockers for arrhythmia/irregular heart rhythms. Measurement tools to test my blood pressure and blood clotting times. A plastic bag for waste and in case I need to throw up.
Various anti-anxiety medications for different purposes - panic and anxiety attacks, and for the occasional messed up sleep due to hyperactivity from my steroids or from painsomnia. Ironically, I also keep more prednisone/steroids in my drawer. They're necessary for when an unbearable pain flare strikes, one where even strong painkillers do jack shit.
It looks like a mini lab in the store room. Housing agents have asked questions about my 'mini pharmacy', for which I have no simple answer to. There's more medication in the kitchen of course; liquids that need to be poured out, or those that need mixing with water for effervescence.
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Bits & Pieces of Leftover Scars
I have a fairly big scar from my mitral valve repair surgery at the bottom of one boob. I'm glad that I didn't have to do an open heart surgery in the end, and that it's mostly hidden beneath my clothes.
Here's also another scar from a tenosynovectomy, where they had to remove the tendon sheath from my wrist due to tuberculosis complications.
Both surgeons did a fantastic job of stitching me back up, and I'm grateful to have had them. Some of my dearest healthcare memories were of conversations with them, even though I saw them for only one procedure.
I remember my heart surgeon telling me why he decided to go down this path. And my hand surgeon showing me pictures of his gory handiwork with passion-filled eyes. While the scars have faded beautifully, the marks will remain forever.
In Conclusion to Invisible Illness - There is Always Visible Evidence if You Pay Closer Attention
There are more scars on and inside my body which I won't show you due to their R21 nature, so we’ll stop here ;) As you can see however, a body gone rogue can be a very subtle thing.
But if you view the world around you through empathetic and observant eyes, you will notice how many stories there are waiting to be told, both happy and sad. Life can be tough as it is. A little more kindness, thoughtfulness and willingness can go a long way.
What other signs do you have that are there with chronic illness or disability, yet can be easy to miss out if people don’t stop to notice? I would love to hear what you have to share in the comments below!
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Comments imported from previous WordPress site.-
Kyle Williams
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Sheryl Chan
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Lucjan
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Sheryl Chan
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Mother Wintermoon
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Sheryl Chan
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Kyle Williams
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Sheryl Chan
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Melissa
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Sheryl Chan
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Kyle Williams
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Sheryl Chan
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the joyous living
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Sheryl Chan
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Despite Pain
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Sheryl Chan
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Claire
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Sheryl Chan
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Carrie Kellenberger
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Sheryl Chan
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Shruti
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Sheryl Chan
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Emma England
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Sheryl Chan
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Micki Hogan
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Sheryl Chan
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Liberty
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Sheryl Chan
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Layla
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Sheryl Chan
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Caz
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Sheryl Chan
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Caz
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Sheryl Chan
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Magic Miss Bri
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Sheryl Chan
Start a new conversation in the Member Comments below!Despite being wiped out totally from a crazy day yesterday, only capable of doom scrolling, i stumbled upon this & decided o needed to read it. An hour later, two things strike me; i bet your experience & knowledge base is probably massive & as I’m now starting to discover, the more mystifying, complex & beyond our medical comprehension is this strange condition (& who knows if it’s triggered by other conditions, extreme stress {of maybe multiple varieties}, genetics, or indeed any combination of those or more things, i get the feeling it’s something medics just don’t want too touch. One condition, ok they can deal with that. Ones caused by that one, a bit harder. Anything else, forget it!
(My journey originally began with ADPKD & a damaged back. Both involve intense pain, randomness of symptoms & even drawing other things in) As a scientist I’m intensely rational BUT also realise how little we actually know & how ppl mostly expect clinicians to have not just answers but cures. I fully grasp some things can’t [yet? Ever?] Be cured or won’t be until we understand more & stop the attitude of testing things as individual issues!
So multiple symptoms for the same cause might be normal for us, we know that & learn to read it (once we realise that we can’t avoid it forever!) but it’s easy beyond many professionals, unless they have experience! That leaves us to sort it on our own. Being your own expert can be threatening but it doesn’t need to be! We just need to have a certain level of confidence to even seek support which means taking about stuff!
I’m not one to question other’s symptoms, if that’s what they suffer, then i trust them (none of us needs more hassle than we already have by adding stuff that isn’t real!) it makes me realise even more how complex we are & how amazing it is that more doesn’t go wrong with us earlier in life! But having a condition shouldn’t sideline is it make us feel excluded or pariahs. We just have s different measure by which we live so that we can still function despite being impaired. We also grasp what really goes on with interactions between drugs & often how drugs can end up totally ineffective, even detrimental & we have to become experts in our own care. It’s not arrogance, it’s a necessity born of the inability for medicine to have solutions! We need to remember (& be proud of things like the fact that we manage to survive symptoms, including levels of pain, that the „normal” person would struggle with & the mental side can & i guess usually is, apart from being even more hidden, though there are signs once we realise what to look for, can be even more destructive & takes even more strength to cope with than anyone who hasn’t experienced it could imagine.)
We get sidelined so easily by others that can’t relate to or cope with us or our lives, we often can only rely on each other for support & validation. That we can & we can share openly gives me so much hope! No matter how bad it might feel, were not alone & look after each other, even if it’s no more than saying „you’re not alone!”
So thank you all of you, despite, or is that in-spite, of your own issues, most of all Sheryl, for having the time to contribute, research & curate this & therefore support each other. {One day or symptoms & conditions WILL become mainstream & common knowledge, just like cancer has become & genetic renal failure (my primary condition) is becoming.} It’s this sort of stuff that helps us be able to get through that next second or wake up refreshed ready to fight again next morning. You’re all wonderful ppl for still being around, despite the pressures on us! 👋🏻😀
Thank you so much for sharing your thoughts and lived experiences, Kyle. And sorry for the late reply as I wanted to read it carefully and have been mega unwell, too.
I agree with you that comorbidities can just jumble everything up into one big mess… I mean, the body does work as one unit, afterall!
I sincerely hope you’re feeling a bit better today, and sending good thoughts!
Your body may break but your spirit NEVER does!
My heart goes to ALL chronically ill women. Regardless of your chronic condition, big or small, you are invisible to others…
…especially to MEN!
Men need to men up and help women with their struggles. There’s still a normalization of “female issues “, and it frustrates me to bits!
Male doctors ignore women, their problems are swept aside. Women suffer and seem to be invisible in men’s eyes, their problems are invisible, their pain is invisible, their illness is invisible, and the list goes on…
Men need to combat other men who neglect, and willingly or not, hurt women. Men should rise above their pride and delusional ideas.
So to I bow to those gents who care, who support, and who spread awareness about the issue of invisible women and invisible illness.
Thank you Lucjan. Also for all you do to raise awareness of endometriosis, and fight on our side. You are very much appreciated! 🙂
As a person with chronic auto-immune diseases, c-ptsd and multiple hospitalizations I can woefully relate! I’ve lost over half of my hair. It would grow back, then BAM! — another medication, flare-up or major surgery would cause it fall out again. Sending abundant love and many hugs your way…sister in spirit. 🙏
Thank you for your comment. I know… doctors and people think hair doesn’t matter. That it’s just hair, it’ll grow back, that it’s superficial. But no. It impacts self-esteem especially for women a great big deal. I love my hair (in all its fine, limp, mousiness). I don’t want to go bald.
🤔 i Like your last comment! I don’t think any of us want too! I’ve had a few years of extreme stress which, contrary to what many medics say, my hair has gone white & i am rapidly balding, exactly the same as my dad did but he took 10-15 yrs, I’m almost as bad in 5 yrs! It’s stuff like that that we struggle to cope with but your stuff, helps us cope! I’m almost at the point of accepting it’ll be departed soon so i may consider doing the job properly! (I guess that’s not on your list!) Talking about it though matters!
Talking about it (at least for me!) helps for sure. But it also depends on who I talk to haha. I would be happy to share about your ‘invisible’ illness and side effects on the blog, if you ever wish to share!
There are so many not-so-invisible signs of chronic illness. My biggest one is the way I walk. My gait has been really affected by my spinal problems. I can only take very small, sort of shuffling, steps. My bottom kind of sticks out, too, so with my cane I really look like a cartoon of an old lady.
I am sorry to hear that Melissa 🙁 I have a friend who has a funny gait too due to a car accident. And sometimes people on the street stare at her, so I stare back. I don’t get it. Is it that ‘fascinating’? People are strange.
Wow! I had a massive fibro flare back on Mar 1st. I’m STILL recovering & a mini-flare last month appears to have done some more damage to L5/S1 & i now have little choice but to use 2 poles when i walk due to the shooting pains. It does at times often involve lots of shuffling! Frankly, I’m too focused on not falling over to even listen to, let alone care about what others say or think! That’s their problem! Enjoy! I don’t care what it looks like!
Yea I walk funny too because of my two broken knees (you can read all about it here if you like: ), and multiple long hospital stays – we know how those just weaken the muscles further!
For me it can be frustrating when I want to move faster, but simply can’t :/
oh gosh — my hair is constantly falling out too! i thought it was just me. my hairdresser will also do special vitamin deep washes yearly to help remove the chemical buildup in my hair from the medicines.
Haha not only you! A hair is a woman’s pride! Yes I also go for hair loss treatment, and it seems to help quite a bit!
Like you say, is pain or illness ever really invisible? Even when there are no actual visible signs, you can often see it in someone’s eyes. For me, my visible sign is one I’ve gone through my life wishing was completely invisible. I have scoliosis and had always tried to dress to cover it, but it’s not easy unless I’m wearing a NASA spacesuit lol. On bad pain days, nothing can disguise my shape. On better pain days, I think to myself that it can’t be seen, then a stranger gives a sympathetic look and asks if I’ve got a sore back. I used to be embarrassed by that. Now, I see it as an awareness exercise lol. I also appreciate those people because they are demonstrating empathy.
Your mini pharmacy is quite impressive. And it even stocks Baileys!!
I am sorry to hear that, Elizabeth 🙁 Yes I think at this point, I’ve gotten used to being visible when it does become visible. I just limp if I need to, lie down where I want… becoming a cranky, eccentric old lady 😉
Haha it was the ex’s booze stock. But it goes nicely with the mini pharmacy, don’t you think?!
Oh there are so many signs of chronic illness aren’t there. The dark circles under my eyes is probably the most obvious for me, but also scars from injections and cannulas etc. So many things, but perhaps others don’t see them clearly as we do.
Definitely, if people only paid closer attention, by a little bit!
I related so hard to this post, Sheryl. Amazing that I haven’t seen it before because I’ve read almost everything on your site! One of my telltale signs is that I’ve got my arms wrapped around my body like I’m holding myself together. You can tell just by how I’m sitting. Thank you for sharing and being so brave and upfront about everything you live with, Sheryl.
Thanks Carrie. For sure the signs are there. What’s funny is that this is the only post on my site that has been flagged as containing ‘shocking content’ so ads don’t show on this particular page. Our lives must be really shocking to viewers :p xxx
You know, I think it’s incredible – the sort of issues chronic illness throws up and how resilient you need to be to keep doing what you need to despite the constant setbacks which may not be obvious to the average person.
I’m so glad you’ve written about these signs – I’m beginning to realise how much we ignore (try to at least).
Thank you for sharing this – more strength and love to you Sheryl.
Thank you so much for your support and kindness Shruti, I appreciate it 🙂 Yes it does take quite a bit of effort and we often don’t even realise it as we trudge on. Sending love to you on your journey, too. May it be a peaceful one, as much as is possible 🙂
Thank you for sharing this. It’s very brave of you, and I imagine it wasn’t easy. It does a fantastic job in raising awareness of how much hidden pain there is in invisible illnesses. I’m sorry you have so much to deal with x
Thank you Emma! No it wasn’t easy as I hate plastering my face all over the internet haha. But I think it helps when there are visuals to it 🙂 Thank you so much for dropping by and sharing! x
This is an excellent post that really speaks volumes to how invisible illnesses are actually quite visible. Will be sharing the heck out of this article!! Great job lady!!!
Hi Micki,
Thanks for the feedback and I really appreciate the support! 🙂
I am sorry you have to deal with all these, I can also relate a little, the cracked lips are the worst they look awful and are painful! take care xx
Hi Liberty,
Thank you for your empathy. Life is still manageable so no worries! Just wanted to raise awareness using photos, because pain is never fully invisible if a person really pays attention (e.g. emotional pain) 🙂 Take care and hope you have a wonderful day!
So sorry you have to deal with all these! I found the hair loss the worst, although mine has stopped a while ago I have not that much left and it’s really lowering my self esteem!
Yes, I find the hair loss worst too! It really does lower your self esteem a great deal, and the cruellest thing is when doctors or friends just go, “stop being stupid, it’s just hair” 😉
Great post, and many of these I can really identify with. I didn’t know about the pigment issue (no.6) with Hydroxychloroquine – I’ve been taking it for just over 2 months now, hoping it has some benefit in the upcoming months. Have you noticed any improvements regarding your Lupus since taking it? x
Hi Caz,
Glad it’s relatable! 🙂 As for hydroxychloroquine, I’m surprised the pigmentation issue is pretty unknown (another reader also mentioned the same problem). Maybe it is more common in Asia, I’m unsure, but my doctor knew right away what it was.
As for whether it helps with the Lupus, I’ve been taking it over a decade so probably. Exactly how, I’m not sure 😉 My doc says it’s one of those drugs that’s good to just maintain there for Lupus because apparently it does help. I hope you’re not having too many side effects! x
Thanks for the reply. Just wanted to let you know I’ve been taking it for maybe 2 months or a little more now and aside from the initial mental side effects (counteracted now with Citalopram, though the rheumatologist said she didn’t think depression or anxiety or anything similar was a known side effect!) I’m doing okay on it. Can’t say I can see any benefits yet though, but I’ll keep my fingers crossed. Perhaps with the pigmentation it’s just a case that it’s not brought up as a possible side effect, and I haven’t gone looking for that issue online, though I’m sure that if I did I’d find plenty of information and experiences from others who have dealt with that side-effect. In general, when getting medication in the UK we seem to very rarely, if at all, be made aware of any side-effects! x
Hi Caz,
Seems like many people in the U.S. don’t know about the hydroxychloroquine pigmentation issue…I’ve had quite a few people message me about it! My doc picked it up immediately, maybe more common side effect in Asian women? I’ve been on it for a decade maybe so I don’t know…but I’m still on a fairly high dose of steroids as well all this time. My doc said it’s a good drug to keep in the cocktail regardless. I hope it works for you!
Stuff that looks like really bad acne in my face, but it’s the malar Lupus rash. The Frankenstein-esque scar across the front of my neck from a C6-C7 vertebra fusion, my walking away or trying not to breathe when those Wal-Mart perfumes are around me and my making my own laundry detergent (chemical sensitivity), not wearing bras and wearing a lot of Jersey cotton (due to tightness and pain on skin), never wearing high heels and mostly wearing slip-on shoes (easier to deal with in pain). SLE and Fribro, plus a myriad of side conditions sufferer.
Exactly…ways we need to skirt around everyday life but are unseen, or misunderstood. Would be interesting to see your photos and explanations somewhere (although I totally understand if you don’t/can’t share…was just curious) 🙂 I hope you are having a decent day! x