Hitting Rock Bottom for the First Time with Chronic Illness
My near-death pulmonary embolism and DVT episode triggered by Antiphospholipid Syndrome was harrowing to say the least. After such a life changing ordeal, my character took an about turn. The personality that I thought was mine beyond doubt became twisted by the hands of fate.
Gone were the carefree, mindless days of youth; in its place was a tormenting worry. How was I going to afford all these medical bills for the rest of my life? What if something this disastrous happens again? What if I am too ill to work by the mid age of 40? Would what I earn even be enough to cover my medication costs?
*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 for more information. Thank you!
- Updated: 27 August 2025
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The Extra Fears When You've Barely Started Adulting
I was still receiving parental allowance then, so the concept of earning a salary was foreign, which magnified the fear. Imagine receiving $200 a month as allowance, with a medical bill of $2000 in return.
I was also easygoing and active by nature, and that too, changed. What sort of person would I be now if I were well? It’s interesting how the personality you think is inherent to you can be flipped like a switch. Friends even commented on how different I had become.
I adopted a nature driven to succeed, fueled by fear. The fear of being alone at 40 in excruciating pain, with no means to support myself (p.s. I'm here now, and this fear has materialised...).
The way I looked at it, I needed to accumulate skills. I had to become the best at what I do, so that I would always be in demand no matter how sick I was. I would have some sort of bargaining power. Why would anyone pick me if my abilities were just average, along with all my health baggage?
The Second Time I Hit Rock Bottom – When My Autoimmune Disease Mutated into Lupus
After that near death experience from Antiphospholipid Syndrome, I started to develop strange aches and pains. My doctor had me tested for Systemic Lupus Erythematosus (SLE/Lupus), but the results were always a little shady.
He would explain, “Some of your markers for Lupus are positive, but that doesn’t mean that you have it. It’s all quite borderline, so for now I think it’s just the Antiphospholipid Syndrome.”
The Calm Before the Storm
However, that 3 year ‘break’ was just a short breather, before the heavy duty fighting that was to come. It was only the beginning of permanent mind fuck and continuous health scares – a tragic play that has been critiqued as being ‛too long, could be much shorter’, and 'the same old rollercoaster ride of emotions gets stale fast'.
The Sudden Fury of the Storm
After 3 years of being undiagnosed, I stepped into my rheumatologist's office for a regular check up. This time, the results affirmed that the balance had now tipped in my disfavour. My Antiphospholipid Syndrome had apparently mutated into Lupus for real. (Actual word used by my rheumatologist... up until then, I had associated the word ‘mutation’ only with X-Men type of positive superpowers.)
Despite years of being aware of the monster in the closet, it still came as a shock. What was in the recess of subconsciousness was now conscious. The monster was ready to wreak havoc, and my only weapons were an array of toxic medications. The gears were in motion, and my life went rolling downhill at an incredible speed...
Trying to Survive the Storm of Lupus
I was started on an assortment of immunosuppressants, which did not ease the burden but doubled it instead. These medications brought pain of its own kind, in exchange for a semblance of physical existence –a plastic appearance of 'wellness' that allowed me to camouflage in public spaces.
Chronic pain has a way of draining you of your sanity. It sows seeds of doubt and breeds internal disharmony. You feel like a prisoner trapped within the disjointed island of your body, with nowhere to escape to, and no bridge back to life.
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My Manifestations of Lupus
Autoimmune diseases such as Lupus affect each patient in different ways. There is no sacred body part that disease cannot reach.
I call my Lupus a 'wanderer' because for me, it seems to get bored, and targets a new body part or system on a yearly basis. To date, it's affected my circulatory system, central nervous system, musculoskeletal system and more.
The Slow Descent to Rock Bottom with Haemolytic Anaemia
My Lupus first manifested as haemolytic anaemia, where my red blood cells were in self-destruction mode. Bone marrow transplant and other procedures were suggested and rejected. As I wasn't dying immediately, the risks outweighed the benefits.
My red blood cell (RBC) count declined at a slow but steady rate, to the point where I was surviving on only half of what a healthy person had. I needed a blood transfusion at some point, and it was then that I learned that I had autoantibodies in my blood. Combined with having a less common blood type, it took the hospital 2 days to procure a suitable pack of blood.
What Haemolytic Anaemia Felt Like for Me
As the decline had been gradual, the impact did not seem too harsh. The everyday nausea, lack of appetite and general malaise had become my norm without me even realising it.
I wasn’t breathless, and my doctor commented metaphorically, it is as if my body had acclimatised to the low oxygen levels. It is amazing how our bodies adapt, in that regard. Until my RBC count climbed back up, I had no idea what I had been putting up with.
Medications – the Ladder that Kept Toppling Back into the Pit of Rock Bottom
We tried almost every oral immunosuppressant available in a bid to control my Lupus, but to no avail. So we advanced to rituximab, which was a relatively new drug back then. It is a biologic drug which is also used to treat cancers such as leukemia, and I would only be the seventh person in the hospital to have tried it then.
This was yet another failed attempt. I not only came out with an anaphylaxis reaction during my second infusion, but also with a $10,000 hole in my pocket. Thus, I was stuck with the most nefarious drug of them all – high-dose steroids. (Decades later, I am still on steroids, and it has costed me my knees, mental health and more.)
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Steroids and Their Impact on... Everything
Steroids are also known as the 'big guns'. It almost always works to control inflammation. Yet, the drawbacks are just are huge.
First, my face and body started to swell from fluid retention (oedema). My hair also grew at a faster rate, which would have been fine if they hadn't grown in unwanted places. People commented on how round my face had become (also known as ‘moon face’). My self-worth and self-esteem plummeted to rock bottom, maybe even more so than the pain itself.
Up until then, I had no idea just how much emphasis was placed on physical appearances in society. Whilst looks aren’t everything, I think as humans we autonomically judge or categorise people we come into contact with.
I also think that as humans we inherently seek for beauty in one form or another (let's explore this in a separate post!). What I knew was that during the years I looked like a man, I was treated with much less kindness in public places.
Rock Bottom is Actually a Bottomless Pit with Chronic Illness
After my Lupus diagnosis, my markers for other autoimmune diseases started to stack up one at a time, year after year. I was diagnosed with Sjögren's disease, epilepsy, migraines, uterine polyps, and other health conditions that I can’t even remember.
Some required that I add more drugs to my daily cocktail, whilst others demanded surgical intervention. Certain conditions drifted away, whilst others returned with a vengeance. 20 years later, this cycle is still ongoing, and the conditions keep stacking.
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The Defilement of Hope
When I was younger, I kept hoping for better days to come because how unfortunate could one really be? There had to be a rock bottom, and then you climbed back up... isn’t that how it’s supposed to work? Aren’t you supposed to emerge a hero after an ordeal?
But every single time – and yes, I mean every single time – when things were looking up, hope would crumble like sand with a single utterance from the doctor. Life with chronic illness is a compact, sinuous curve of happiness and pain. You begin to fear the things that make life beautiful, because they are now a precursor to more pain.
Self-Sabotage as a Coping Mechanism
To deal with this, I started to rock the boat I was in whenever life got too calm and cosy. I reasoned with myself, "if there is always a little trouble in my life, then things can’t get too bad, can it?"
Even if you know that that isn’t a rational thought, it doesn’t take much for fear to convince you otherwise. How every person protects themselves is afterall, partially driven by their personal fears, and coloured by their own life experiences.
All We Can Do is Learn to Survive at Rock Bottom
With the help from a good psychologist, self-reflection, personal epiphanies, meaningful relationships and life lessons learned over time, I have come to a place of self-acceptance. The length of that sentence doesn’t do justice to the decades it took to get me here. So if you’re struggling, know that it takes time, and that there’s no rush.
If I need to visit rock bottom so frequently and not by choice, then all I can do is to develop the skills I will need to survive, like a castaway marooned on an island full of predators. I will need to establish a foundation where I can rest and recover in, no matter how makeshift it may be.
And when that foundation crumbles like it always does, then all I can do is freefall until I land at the next level down below. But this time, I will have the tools and resources I need to rebuild again.
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Despite Pain
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Sheryl Chan
Start a new conversation in the Member Comments below!Sheryl, I can’t even begin to imagine what you have, and continue, to go through. You certainly don’t get it easy. You have come up against hurdle after hurdle.
Hi Liz, apologies should have clarified that this was an old post that I updated! But yes, year after year chronic illnesses just pile on. I’m sure you know how that goes 🙁 I hope you’ve been well. Sending my love x