Learning to Accept My Auto-Immune Disorder - Rida Maryam Zafar
This February marks the first time in almost seven years that I have made it through six consecutive months without experiencing a flare-up of my autoimmune disorder. What makes this feat especially extraordinary is the high frequency of flare-ups I had last year - three in a span of five months. Funnily enough, this curious absence of my condition coincides with me reframing the relationship I have with my physical health.
This tumultuous relationship came into conscious existence when I was ten years old. As a fifth grader, I had to take annual exams for the first time and I was devastatingly nervous. I found going to bed difficult because I thought I didn’t deserve a good grade unless I sacrificed at least some sleep for my exams. With the season changing and my childish stress levels rising, I eventually contracted a cold and a fever. My parents weren’t too concerned about my symptoms, partly because as an E.N.T specialist, my dad regularly dealt with symptoms like mine, and partly because these symptoms just weren’t serious enough. But, when my temperature started rising from mild fever to high-grade fever and a few weeks had passed without me getting much better, they realized I had something a little more uncommon than the common cold. Several visits to several doctors ranging from pediatricians to general physicians to infectious disease specialists later, my symptoms, rather insidiously, subsided on their own.
But these symptoms had only cooled to return with more fervor the following year. My intense reaction to an antibiotic I had been given to treat a conjectured attack of typhoid only perplexed my legions of doctors. My blood-tests, X-rays, ultrasounds, and echocardiograms all suggested I should be healthy despite my rashes, raging fever, nausea, and lethargy. One exasperated doctor after another told my parents nothing could be done because they simply did not know what, if anything, was wrong.
Eventually, I was diagnosed preliminarily with Still’s disease, a type of Juvenile Idiopathic Arthritis that is characterized by high spiking fevers, salmon colored rashes, joint inflammation and as yet no known causes. A bonus discovery of a penicillin allergy accompanied this diagnosis. Since my symptoms were serious, my doctor put me on corticosteroids and I started to get better.
Over the course of the next decade or so, my autoimmune disorder and the subsequent dose of corticosteroids would follow me around three continents as I navigated my undergraduate and graduate degrees. I have a story of a flare-up from almost every city I have ever visited, no matter how short the trip. My symptoms include inexplicable fevers, rashes over my body, enlarged thyroids, and a cough that lasts months. We can now rule out Still’s disease since my symptoms have diverged. We don’t know much about my condition, but we do know, like most auto-immune disorders, it is here to stay. Statistics show that being a woman and eating high-fat, high-sugar, and highly processed foods can increase your chances of having an autoimmune deficiency. So, we also know that the odds were always stacked against me. It’s something I have been forced to accept, but the very nature of our relationship where my malfunctioning immune system wields all the power only instilled a defeated bitterness, and not a neutral acceptance.
The bitterness I started feeling as a child made it difficult for me to process my health in a holistic way. For one, I tried not to think about it unless I absolutely needed to - during a flare-up or a round of corticosteroids. Being ill and then experiencing a medicine’s side effects such as significant mood changes, indigestion, insomnia, and hormonal changes compromised my ability to develop anything close to a healthy relationship with my condition. Not fully understanding why my body was attacking itself and not having a concrete diagnosis to turn to made my autoimmune disorder seem even more elusive.
It was only in my twenties when I started to process my condition beyond a purely physical and in many ways superficial layer of illness and recovery. I remember talking to a counsellor during our introductory session exploring any childhood trauma I had experienced. It was the first time I began viewing the months I lost being sick every year and the self-loathing that ensued as traumatic events that I was not equipped to categorize and understand in their entirety as a child. I lacked the language then, but having my experiences validated was an important first step in reconfiguring how I viewed my autoimmune condition and my own self.
Despite learning about the cognitive and emotional implications of what I previously conceived of as a purely physical condition, I didn’t know what I could do about it. As I worked on my MSc dissertation and experienced inextricable stress and anxiety, my body kept failing me and I went through three consecutive flare-ups that were only ever separated by a few weeks. My corticosteroids made me angry, tired, and made it harder for me to nourish myself through sleep and food.
These recurring flare-ups were, however, also the first time I was able to experience my illness without fear and uncertainty. I still experienced my illness as an obstacle to my functioning, but because I spent so much concentrated time managing my condition, I was able to rid myself of the impending fear of the next time I would be sick. Considering it takes a minimum of three weeks between experiencing the first symptom and ending my course of corticosteroids, I spent at least nine out a 20-week period being ill. It was only the absence of fearing the next round of my disorder that made me realize how much mental energy I was expending worrying about it.
My condition is triggered by stress and changing environments. In the past, I have felt like worrying or changing my environment are active decisions I have taken that have contributed to my condition, which has subsequently led to intense guilt over triggering my condition. Being forced to experience both the sheer randomness of my condition and working with my counsellor on gaining more agency over my choices and distancing myself from the guilt I previously experienced of “making” myself ill served as helpful complements to each other.
It also helped to rethink the language I was using to talk about it - to myself and those around me. I realized I was treating my faulty immune cells as evil masterminds and the disorder as a nemesis and giving legitimacy to that treatment through the way I talked about it. I decided to reclaim some of that power back. I now think of my auto-immune disorder as something I have to coexist with, not something I need to fight. I no longer think or talk about my condition as an attacker or my body as an entity that has failed me. My body is just a body, and the way I experience the world cannot be reduced to a condition that pops up sometimes. It’s also helpful to remind myself of all ways I exist beyond just my physical navigation of the world i.e. through my relationships, my work, and my thoughts and emotions.
At the same time, I have also worked on improving my physical health through concrete steps. I have worked hard to improve my sleep hygiene, to eat better, and to start exercising. It is the marriage of these physical and mental changes that have made me feel like a healthy person for the first time in my life. They’ve also prepared me for the next bout of my disorder. When it comes, I’ll have the language to process it and the physical competence to not be as adversely affected by it.
Incorporating these changes has been difficult. I’ve probably spent more time being stressed these last six months than I have ever been in my life. But, I’ve also spent the most time working on my self-esteem and the narrative I create for myself, my physical health, and my relationship with myself. I am well aware that my approach may not work for others with more serious auto-immune conditions, but I also believe there is value in acknowledging the toll, both physical and mental, living with a chronic illness takes on you, and trying to reclaim ownership of our personhood despite our chronic illness.
Rida Zafar is an education researcher in Pakistan who is also passionate about mental health and well-being advocacy