Did Stress Cause My Autoimmune Disease?
Key takeaways:
As a teenager, Sabrina Qiao was constantly stressed out, worried about her grades and her appearance.
When a kidney disorder caused her to lose control over her body, Sabrina didn’t know how to handle it.
This is the story of how having an autoimmune condition changed her mindset.
My Journey is a series of personal essays about what it’s like to cope with a medical condition.
Three weeks before I ended up in the hospital, my friends and I played The Sims 4, a video game that filled me with both comfort and chagrin. I was a senior in high school, and I still sought relief from the stresses of daily life by playing God. As we designed our alter egos, I agonized over my Simself’s physique, wanting to make her thinner than I was but worried that my friends would notice.
While I was busy designing my imagined self, I was feeling distressed about my real body. I’d recently put on 20 pounds of water weight, which swelled my calves until the skin was taut and shiny. Angry red dashes lined my thighs, imprints from jeans that I was convinced the dryer had shrunk — the same way I wanted to believe it had shrunk all the other pieces of clothing I no longer comfortably fit into. Externally, my appearance was changing in ways I didn’t want to acknowledge. But, internally, my body was in revolt in ways I didn’t yet know.
Diagnosed with an autoimmune kidney disorder
Then, one morning, I woke up and fell over, thrown off balance by the continued swelling. By that night, I was in the hospital. There were IVs (intravenous lines), blood draws, a renal biopsy. A team of physicians inspected my test results and dissected the constellation of symptoms I had largely ignored over the preceding month: edema (swollen body tissues), foamy urine, extreme fatigue.
“You have something called minimal change disease,” one of them said, describing it as an autoimmune kidney disorder.
In autoimmune conditions, the body creates antibodies against itself, mistakenly attacking its own cells as if they were foreign invaders. For me, the damage in my kidneys had thrown off my body’s filtration processes — hence, the swelling and decreased urinary output. One doctor described the “chronic and intermittent” nature of my disease. Another told me the internal damage was “minimal.” A third described treatment and its associated side effects, including “significant weight gain.” I cried through all three speeches.
Did stress cause this?
Officially, my disease was considered “idiopathic,” which means the cause was unknown. This might have comforted someone else, reassuring them that they couldn’t have done anything to prevent the illness. But I wanted to know more. I kept asking my care team, “Did stress cause this?” I told them repeatedly, “I’m stressed all the time.” They seemed amused by my inquiries. But I was sincere in my questioning. I had been stressed, and it plagued me as an illness would, rendering me cranky, tired, and disoriented. It seemed logical that my distress had manifested physically.
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Asking my doctors about the role stress played in my disease formation was actually a way of trying to understand my culpability. When I asked about stress, I was really asking: Had starving myself contributed to my illness? How about the binge-purge cycles that followed my anorexia? Was it relevant that at 16 I had lost 20 pounds in 3 months and also lost fistfuls of hair, tarantula balls that littered my bathroom floor? Should I have told them about the year my period disappeared because of malnutrition? Did they need to know about my punishing workout routines, the two hours I spent in the gym every day? Was the fact that I routinely slept only three hours so I could tackle my AP coursework of concern?
But they didn’t ask about these issues. They wanted a family history, and responded “hmm” at the mention of my maternal grandmother’s end-stage renal failure. Then they spoke about the cyclical nature of autoimmune disease, describing how I might experience occasional flares — periods of active symptoms — that could be treated into remission until something caused the symptoms to return again.
During the next eight months, I relapsed seven times, falling ill each time I caught an infection or my doctor tried to taper me off steroids.
The shame of vanity about my appearance
Physically, I wasn’t in much pain. Relapses were largely silent and internal. But with no physical agony to point to, I struggled to find the language to explain why I felt the way I did: lonely, irate, terrified, frustrated. And ashamed. Had I done this to myself?
The steroids made me constantly flush red and caused a layer of fat to develop around my cheeks — a side effect colloquially known as “moon face.” Deep stretch marks traversed my calves and thighs. Whenever I bemoaned these changes, I felt a stab of guilt. How could I still be this vain when I was lucky enough to receive treatment, to have only “minimally damaged” kidneys?
This sense of shame kept me from wanting to see anyone. I felt responsible for my diagnosis and undeserving of compassion or companionship. I had interpreted my disease as a punishment for my vanity — for wanting to be skinny so badly that I had starved myself until I could suck in and my belly button would almost kiss my spine.
Grasping for control
I couldn’t yet see that my eating disorder and my autoimmune disease were refractions of each other, both connected to my attempts to grasp control. My anorexia had given me a way to enforce order in my life during a period of high stress, when the uncertainty of which college would accept me felt overwhelming. And in blaming myself for my autoimmune disease, I was also assigning a tidy narrative to it. In a perverse way, by saying I had caused my illness, I was suggesting that I had the potential to cure it.
I needed to believe in a cure, not just a treatment. Although my wishful thinking was harmful, it helped me cope with what the scientific literature was telling me: I had a disease that had been encoded into my DNA. Perhaps, under different circumstances, it might have remained latent my whole life. Or perhaps I would have become ill regardless. But now I might have to live with it forever, an endless cycle of remissions and relapses.
“This is not the life I wanted for myself,” I cried to my mother during one relapse. I had tried going back to school after being gone for 6 months. I had thought the remission would hold, and then, suddenly, it didn’t. Looking back now, I feel compassion for my younger self, but I also see how silly her statement was, a relic of her time playing Sims, the belief in her ability to control all aspects of her life.
Do I deserve to be healthy?
I did, eventually, get better. I was prescribed an infusion of the monoclonal antibody rituximab, which put me into a long-standing remission. I returned to school full-time. I walked at my high school graduation. I went to college. And when the glow of gratitude for my newfound health began to wane, the guilt set in once again, and I thought: Do I deserve to be healthy?
By my junior year of college, my nephrologist felt comfortable suggesting that I most likely wouldn’t experience another relapse. But it would take years of therapy to heal my relationship with food. First, I would have to identify the source of my need for control. I would have to learn how to forgive myself.
Now, at 26, I’ve been in remission for seven years. I also no longer starve myself or spend hours at the gym. In a strange way, my autoimmune disease gave me a gift: the ability to accept and withstand uncertainty. It made me let go of the linear logic that made me believe, for years, that I had to suffer to excel and that my afflictions were always my own fault.
The last time I played Sims was for research, for an essay I was working on. At one point, I maxed out the free-will bar and let my Sims do as they wished, without oversight from me. They seemed happy. They had no idea what would come for them, what I might do in the next day or the next hour. But perhaps that was wonderful in its own way. They were free. And look, there they were — living.
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