Between my Disease and Me

When I was eighteen years old and had yet to be diagnosed, I used to wait tables. On good days, I would hoist the tray above my shoulder teetering with overfilled cups and appear for all intents and purposes like any other high school girl trying to earn some extra cash after school. On bad days, I would still hoist the tray above my shoulder but with herculean strength and a hobble in my step. I was noticeably unwell, but I needed the money so I would go to work anyway—hoist the tray, and force each step to be as seamless as possible. I would watch the customers in their booths watch me and become aware of all of the ways I was not, in fact, a normal high school girl just trying to earn some extra cash. This pattern of days repeated itself for most of my senior year of high school—go to work, hoist the tray, hobble around, and watch them watch me.

Perhaps they weren’t even aware of how much their staring bothered me. How it made me feel like I had something to prove to them. They may not have even been aware that they were watching, at all. Their subconscious vigil has been a burning point of trauma that is seared into my memory. When I moved away for college, I insisted upon wearing towering platform boots to class and adorning myself with other articles that would present some challenge to my balance. My knees would ache fiercely—a stabbing, constant pain—but I would walk with slow, measured steps in my impossible shoes as a way of flinging those stares off of myself. Perhaps I was still being watched, but I was sure that this time, it was for a different reason. This time, the eyes would pass over my knees and zoom in on the boots and maybe think “wow, she must really like fashion,” or even better “wow, walking in those boots must be easy for her.”

When I moved again for graduate school, I remade myself in tiny, colorful pumps and sandals and fitted cardigans tucked into circle skirts. It mattered to me how I presented myself because I had spent the last several years of my life feeling watched. I would adorn myself with tinkling earrings and dainty golden chains like some great, Grecian champion and I would force my body to move—performing a balancing act upon my stilts of leather and buckle unbeknownst to those around me.

Boston is the first place I have ever lived where I have been wholly dependent upon public transportation, and so after my night classes, I would pack up my bag teaming with books, smooth the wrinkles in my skirt, button up my coat, and walk the eighteen minutes to the train station that would take me home. There is a closer train station that I could have taken, but to do so would require switching trains at some point, climbing the steep steps up and down at the train station when the escalator was broken—which it often was. So, near skating across the iced over sidewalk, I would force myself to the train station further away.

Sometimes, this walk was easy for me and other times, there was a searing pain burning a trail throughout my body, sinking sharp and unforgiving teeth into my wrists and ankles. By the time I would make it to the train station, sometimes there was a place to sit and sometimes there wasn’t and so I would stand and my balancing act would continue. It would continue still when there wasn’t a place to sit on the train and even still when I would climb the three flights of stairs to my apartment and collapse—shoes and all—on my bed. There are things that I could have done to make things easier for myself—asked someone to move so that I could sit down, taken the elevator at the train station, budgeted money to uber home—but the thing about putting so much effort into not appearing disabled, is that when there are cracks in that armor, the stares inevitably follow. I didn’t want to be watched. And so like the tray when I was eighteen, I would hoist myself upon my stilts and I would measure the pauses between steps by counting the puffs of chilled air that would escape a quivering mouth. I didn’t want to appear like I was struggling. I didn’t want to appear as though I were out of breath. So I would count those puffs of air and think to myself just a little further, just a little further. Every moment since that ordinary November morning at age eighteen when I awoke and could not straighten my arms or legs has been ruled by that mantra: just a little further, just a little further.

Just as it has been since that unforgiving November morning, the last year of my life has been ruled by those four words. Starting in March of 2020, since I am immunocompromised, I sequestered myself away in my apartment and for the first time in years, my daily life was not a balancing act. Instead, I was being watched in new ways. Suddenly, everyone knew that I was sick. When my family wanted me to fly home, I had to remind them that airplanes had become dangerous to me. When my roommate wanted her boyfriend to continue coming to our apartment despite the lockdown order, I had to remind her that I was afraid of dying. When I would doom-scroll on Twitter between the hours of dawn and dusk, I would see friends, mentors, and colleagues debating the measure of my life—whether or not, because of the pandemic, certain people would just have to be sacrificed. Everything that I had put effort into building for myself through years of work and suffering was crumbling around me. I didn’t leave my apartment for weeks and I felt more watched than I ever had with that tray on my shoulder and tinkling golden chains looped about my neck.

Unfortunately, the beginning of the pandemic roughly correlated with my disease getting out of control. That is what the doctors always call it: your disease. I have a non-specific autoimmune disease that isn’t really lupus but isn’t really rheumatoid arthritis and yet still isn’t connective tissue disorder. And so, without any label available, my illness became your disease. Not as if something unwanted was invading me, but that I, myself, were an unwelcome invader.

Between April 2020 to this moment in August 2021, I have endured infusion treatments, rare rashes that only one percent of patients get, allergic reactions, lumps on my neck that won’t go away, hospitalization, and inflammation in my heart. I have seen myself swell and shrink like great waves in the ocean—inflammation reconfiguring my body not in the shape of a high school girl hoisting a tray or a graduate student in colorful pumps, but into the shape of what was to me a monster.

So much of my life since being diagnosed has been ruled by the desire to remake myself into shapes that are less obviously sick. Over the course of the last year, my body has made it very clear to me that it does not want me to occupy it. This last year has been an exercise in un-making—my body unable to fit into those old patterns of able-bodiedness no matter how hard I try. And despite all of this, because I felt so watched, I turned in a final paper two days after my first infusion treatment battling severe nausea and attended Zoom meetings from my hospital room. The nurse in the infusion center was kind enough to help arrange my IV so that it was off screen for my Zoom meetings so that I could talk about long-dead literary figures.

Even though more people knew of my disease than I had ever felt comfortable with, I still didn’t want anyone to think I was sick. I didn’t want to be watched and for my physical struggles on bad days to be chalked up on some invisible tally board and compared to my good days. With illness suddenly on everyone’s radar because of the pandemic, I didn’t want to be quietly evaluated. I would sit in my Zoom classes for six hours on Monday nights and upon standing from my chair, I would promptly drop to my bedroom floor, crawl to my bed on my hands and knees, and go to sleep—terrified and aching all the while. And then, the next day, I would wake up, spend an hour doing my hair and makeup, and I would prop myself up in my chair and perform ability on Zoom again.

And this isn’t to make anyone feel guilty—I don’t want pity and I don’t want guilt. I don’t want to be watched. But at the same time, the last year of my life—living in a pandemic with an out of control autoimmune disease—feels like something important to share as colleges are opening and as immunocompromised people are not being factored into university policies. The last year of my life has been the most scared I have ever been. It’s been the most painful. The most demanding. I have had to exhibit strength that frankly I didn’t have most days. My pandemic routine continues to play over and over again—wake up, pills, pain, smile, pain, sleep.

As a first year PhD student, there is an immense pressure to produce—to publish, to write, to perform. And I have done those things. I have produced, I have pushed myself to the brink of productivity. And the cost of that productivity is invisible in ways it never has been before. From the waist up on a Zoom call, I appear stressed but healthy. From the waist down, I am arranged in my cramped desk chair in tense folds of legs and swelling. From the waist down, I am a creature only forced into the shape of a twenty-six year old girl. My knees are swollen and lumped, my wrists are tucked into braces. My feet are red and tender to the touch. No one can see how I position my fingers over the keyboard. No one can perceive my balancing act off screen. They see my eyeliner, they see my hair, and for the first time in years, they see my illness—but only in ways that they want to see those things.

Between my disease and me is a secret suffering only articulated in the last year from the waist down. What does carework mean in a time when you are the one most in need of care? What does it mean to ask for care when others are so stretched thin? For me, it meant breakdowns on my shower floor—icy water spilling over bare shoulders and begging for just a moment of relief between episodes of inflammation. It meant waking in the night, my skull pounding a pathway from my temple down to my neck, my pillow a mauled pile of fabric in a clawed fist.

Suffering is often intensely private. And yet, the pandemic has made my suffering a matter of public opinion and debate. If anyone were to glance just beyond the margins of my Zoom screen, they would perhaps see the pile of pill bottles on my dresser. Perhaps they would notice how I shift positions so often in class, bending one knee and then another. Maybe they would see the red lumps on my neck and chest, rosy fingerprints smeared across too-pale skin where I rub and pinch at painful spots. Although I suffer so visibly, this year has shown me that people ultimately see what they want. I am more perceived than ever, and yet I am rendered more invisible than ever before.

I was sick before the pandemic. I will be sick after. I will be sick for the rest of my life and carry the burden of illness throughout my time as a PhD student. My disease is not a metaphor for some moral battle to be won, it is simply a reality of my life—an illness that lives with me as I live with it. While I have managed to perform my obligations—to be productive, to attend class, to be involved—in the last year, the cost of these obligations has been immense. Mostly, personal devastation. I have sacrificed my physical wellbeing, my mental health, and my comfort all to fold myself into the shape of a successful, able-bodied graduate student. I do not regret this work—in fact I would do it all again in a heartbeat because it is work that I deeply care about—but it has come at a great personal cost that few can truly understand. All this to say, do not forget your disabled colleagues even as we return to our classrooms and the way things once were. It is hard to talk about disability, but we can’t just go back to the way things were. I can’t return to a life of invisibility after a year of being so watched. Instead, I invite you to sit with my disease, as my disease sits with me—to not forget, in this year of watching, what you have seen.