I first noticed the spots on a sweltering June night, as the heat seeped through the floorboards of my sublet. In the mirror, I scrutinized the smattering of red bumps crawling across my chest and down my ribcage. I wondered how I would wear a bikini with them. I googled “heat rash,” hugging a bag of frozen peas to my chest.
A few weeks later, when the spots flattened, expanding into dime-sized lesions that then merged into nickel-sized patches, I itched them until they bled and substituted Google image searches in place of professional medical advice. I diagnosed myself with pityriasis rosea because it was a skin disease that offered spontaneous remission; something patience could cure.
My actual diagnosis — guttate psoriasis, a chronic autoimmune disease affecting the skin — would come four months later. By the time I opened the biopsy results, it was October, the same month when, four years earlier, I had been diagnosed with my first autoimmune disease. But this second diagnosis felt different. While I was familiar with the feeling of grieving over my health, with the sense of bewilderment and anger over my body’s revolt, I wasn’t prepared to confront how deeply my appearance and my conception of my worth as a woman were intertwined in my mind.
I was terrified I wouldn’t recover, but ruminating over my health was overwhelming and abstract. Agonizing over how people would see me felt much easier; it felt familiar.
I had struggled with this before, when, at 17, I was first diagnosed with a chronic autoimmune kidney disorder called Minimal Change Disease (MCD). The result of a protein imbalance circulating throughout my body, MCD disrupts the body’s homeostasis. Internally, this meant that my kidneys were leaking massive amounts of protein. Externally, it meant that I began to swell from the loss, all over my body. One day, I was a high school senior, anticipating prom and graduation. Then, seemingly overnight, I woke up as a kidney patient, my body morphed into something I no longer recognized. I went into remission six weeks after starting medication, but then relapsed seven times within eight months; the worst relapses left deep stretch marks on my legs and thighs, areas where the skin split apart from all the fluid pushing against it.
As a young woman, I had always been conscious of my body — the shape and weight of it, the color and texture of my skin, how much space I took up and how much space I was “allowed” to take up. And as a born perfectionist, I was always searching for methods of “self-improvement” — and I viewed bettering myself physically as crucial to the process. Growing up, I wrote journal entries with lists of “goals” I strove towards: in addition to dream universities and careers, there were bullet points for goal weight and goal height. I came to regard how I presented myself to the world as a marker of my inherent worth. I recognized that beauty was only skin deep, but I also felt people would form opinions on who I was because of what I looked like. Appearing “put together” was my attempt to control these perceptions. My diagnosis revoked my ability to do that.
During my treatment for MCD, I was ashamed of my vanity, but I couldn’t stop focusing on the ways my body was shifting. The winter months of that year were just a blur of relapses and doctors; my tumultuous disease progression meant I had become an “interesting” and “unique” case. Yet what I remember most keenly from that period is my loneliness. The longer I was sick, the less I heard from my friends, and I began to wonder if my changing appearance was the reason why. I was terrified I wouldn’t recover, but ruminating over my health was overwhelming and abstract. Agonizing over how people would see me felt much easier; it felt familiar.
As I shuffled from specialist to specialist, I still worried over my how my jeans no longer fit across my abnormally bloated thighs, or how much weight I would gain on the medication they put me on. When I finally returned to school, I worried about how people would react to the lingering effects of my steroid therapy. My face had developed an extra layer of fat colloquially known as “moon face,” and I flushed at inopportune times, a neon sign of misery. During my appointments, my care team and I discussed medication and lifestyle changes, but we never covered the emotional effects of watching my body transform into something I viewed as grotesque.
Other people noticed the changes too. I ran into one of my mother’s friends while out grocery shopping; after exchanging pleasantries, she tilted her head and observed, “You’ve gained weight, haven’t you?” I didn’t know how to answer: telling her I was sick felt too vulnerable, but not telling her felt like admitting I had “let myself go.” I blinked at her instead.
I became focused on my weight, partly because it exemplified my larger struggles over losing control of my body. Prior to my diagnosis, I had been watchful about what I ate, fastidiously tracking my meals and dutifully exercising to “burn off” extra calories. Afterwards, as I dealt with the swelling caused by the disease and medication that virtually guaranteed weight gain, I viewed my disease as an affront to all the hard work I had put in. The loss of control that accompanied MCD seemed like a targeted moral lesson on vanity, and my feelings of helplessness and anger were tinged by deep-seated shame.
I know that I have — or should have — more important priorities, like staying healthy and alive. But the disconcerting part about having chronic illness, in my experience, is that it compounds, rather than negates, any underlying insecurities. I find it easy to “get my priorities” straight in a time of crisis (a biopsy result, a urinalysis). But with a chronic illness, these critical moments are spread out, and the illusory calm in between ushered up familiar concerns for me.
I had counseled other patients my age about de-stigmatizing disease, but a part of me believed I must be broken in some way.
When I got the psoriasis diagnosis, I was prepared to face the uncertainty of its prognosis, but I had forgotten how deeply affecting the physical element of disease is. Psoriasis is a “common” autoimmune disease, especially compared to MCD, so there were many more resources available to me as a psoriatic patient than there had been for my kidney disorder. However, even though I wasn’t physically limited the way I had been with Minimal Change Disease, my appearance was transformed in a way that felt familiar to me. When my fingers strayed to my lesions, I felt fear and revulsion — how would anyone see me if my largest organ was an advertisement of my body’s betrayal?
Objectively speaking, my psoriasis wasn’t bad; it spared my face and was easily hidden underneath winter clothing. "These spots usually don’t even scar,” my dermatologist told me cheerfully. Another dermatologist explained that the lesions were “just symptoms, a physical manifestation of my body reacting to something internal,” but that almost felt worse.
After my Minimal Change Disease went into remission, being a patient had become a central part of my identity. I even became a patient advocate, and I took pride in speaking with and encouraging other patients. Yet, when this second diagnosis came, my hypocrisy surfaced; I had counseled other patients my age about de-stigmatizing disease, but a part of me believed I must be broken in some way. I had always viewed maintaining a certain standard of beauty as necessary to both feeling and being perceived as feminine, so I worried people would see my skin and draw the same conclusion I held: I had failed to protect my femininity, and now my body was announcing that failure through my skin. This accusation haunted me, but it also provided a perverse sense of reassurance and incentive: if I could just look traditionally feminine again, then I would have to be healthy, wouldn’t I?
After my Minimal Change Disease went into remission, I thought being as open as possible about my body would be a way in which I could reclaim control. But the corresponding responses always carried a mixture of awkwardness and uncertainty. I told a man I had met on Tinder on about my MCD on our second date, while we were on a hike. “That sounds really tough,” he said, before leaping across a stone and hurrying ahead of me. Another time, I mentioned it while lying in bed. I was curled against a guy I was casually seeing, my head resting on his shoulder; he waited so long to respond I had to lean up to make sure he hadn’t fallen asleep. He was staring at the ceiling.
I don’t want to perpetrate the perception that patients are somehow less worthy of love. But that’s often the impression that I get from our culture through my experience with chronic illness, and current research only fuels my concerns; a 2009 study published in Cancer found that women with serious medical illnesses were far more likely to be abandoned by their partners after their diagnosis than male patients. Well-meaning relatives warn me about disclosing my illnesses to potential romantic partners, the implication being: who would marry a sick girl? When faced with the choice of taking a medication, one of the first concerns is always fertility, the implication being: what is your worth if you can’t bear children?
Perhaps the idea is to conceal these “secrets” until I get to know someone better, until I think he won’t leave; yet, to not disclose this portion of my life, to hide it or gloss over its impact on me, would feel disingenuous. I know, I’ve done it many times before.
This time around, instead of being transparent about my diagnosis, I became vague instead. “I was sick for awhile,” I said to a medical student I was seeing. He was curious why I had missed so much school. “Can you talk about your illness?” he asked, and then quickly amended with, “We don’t have to, if you don’t want to.” I was touched by his compassion, but when things fizzled between us, I wondered if my health was a dealbreaker.
When my renal disease went into remission, it became largely an invisible disease, a narrative I could seemingly control. But when I developed psoriasis, its inherent visibility meant that if I were ever intimate with someone, they could read the story written on my skin.
I know that this goes deeper than just vanity. I’m also grappling with the identities and roles I’ve taken on throughout my life, some of them voluntary and some of them not. It is acknowledging that I will perhaps always feel I have failed some of those identities. It is recognizing that, for me, being a patient is as established as being a brunette or being Asian American, a trait woven into the structure of my DNA. If I stopped focusing on it as much, I could possibly see it has become just another type of “normal” in my life.
In addition to envying other girls who are thinner, taller, or more conventionally “attractive,” I also sometimes look at my friends and wish, badly, that I could be healthy like them — the permanent kind of healthy. Without that sense of security, my body is always on the forefront of my mind. I wonder if focusing on other people’s perceptions of me, worrying over a partner’s reaction, is really just a way to avoid confronting how I view myself. I can change my diet, curl my hair, and slather on concealer, but I can’t control if — or when — I’ll relapse; I can’t promise my health won’t preclude me from accomplishing those girlhood goals I planned for.
I like to plan, to predict, to exert order; this uncertainty hanging across my life terrifies me, and it also forces me to really look at the topography of my body — all its divots, divergences, and dimples. If I go a little deeper, pivot my focus from its outward display to its inside — to the fact that my heart continues to beat, or my lungs continue to fill with air, or that I get to do what I love, to write — I glimpse how hard this damaged form works to keep me alive. In those moments, when I get it right, I don’t feel like such a failure.