I can’t see the top of my dresser, or any part of the pleather chair in the corner of my bedroom, the one that doubles as my cat’s scratching post. Nor can I see half my floor. I can’t see them because these surfaces are all covered in dirty laundry—sheets and towels and shirts and jeans and work pants, and more socks and underwear than seems reasonable for one person to own.
Here’s my recipe for one batch of laundry: First, carry your overstuffed laundry bag out the door and down five steps. Next, drag it across the little lawn until you reach the sidewalk. Lift the bag as best as you can and carry-drag it the twenty feet down the sidewalk to your car, which is conveniently parked in the driveway. Open the trunk, lift the bag, and place it inside before closing the trunk. Do a similar version of this, in reverse, when you arrive at the laundromat. You probably know what to do from here, so I’ll spare you the rest.
On a good week, I do my own laundry with some difficulty and residual joint pain. On a less-good week, I drop it off at the Wash House laundromat and pay for the young woman who works there most mornings, and who always has a book within eyeshot, to wash it for me. When I do this, I am both grateful and embarrassed. Having grown up “working poor,” as my parents called us, this seemingly upper-middle class service feels indulgent at best. But I’m lucky because I have some savings, I remind myself, as I pay the $53 (cash only) to the woman who’s just emptied the contents of my two bags and their weeks of dirty socks onto the scale. If she’s judging me, her face never shows it.
An average washing machine holds around ten pounds of laundry. On this particular day, the weight of my shame is roughly 42 pounds, excluding bedding, which I’ve left at home since it would nearly double the cost. I’ve learned to buy lots of socks and underwear in preparation for the bad weeks. This is a bad week in a series of bad weeks that stretches across most of the semester.
Before you judge, let me explain. I’ve been doing my own laundry for most of my life. I am not a messy person, not lazy or depressed or too busy (though I am sometimes each of these things). I’m trying not to get defensive, but it’s difficult when I anticipate potential judgments, and when the loudest of those judgments is mine. The truth is that it shouldn’t matter—not to me, or to you—that I’m usually neat and tidy, and usually full of energy that cycles between anxiety and enthusiasm, and usually on top of my shit. I’m a typically overworked fourth-year PhD student who’s teaching two undergraduate English courses and working on my dissertation. I pride myself on being conscientious, meeting deadlines, and showing up early. I’m a rule-follower, a dedicated teacher, a good student. I’m someone who people see as always being okay (even when I’m not). Someone who people don’t worry about (even when they’d be justified in doing so). But right now—and this week, and the week before, and the week before that, going back months—I am person whose disability has prevented her from doing laundry. A veritable lake of laundry, its shoreline circumscribed only by my bedroom walls.
I am living with rheumatoid arthritis (RA), an autoimmune disease that I was diagnosed with when I was nine, after a year of inexplicable pain and swelling in my hands. Technically, I was diagnosed with JRA, but now that I’m forty, I feel weird about the “J,” which stands for “juvenile,” as if it’s a disease that you’re supposed to outgrow once you’ve lost all your baby teeth. With RA, your body attacks synovial fluid—mostly found within joints. It causes them to swell, stiffen, and eventually to erode the bones and cause permanent joint deformity. It starts with the smaller joints, usually affecting them symmetrically. If you get a swollen right thumb, it likely heralds the onset of swelling in your left thumb. Due to inflammation in my hands and shoulders, everyday tasks that demand strength or dexterity, like doing laundry, are often painful, difficult, or both.
Since the start of the pandemic, my medication, known as a biological disease-modifying antirheumatic drug (DMARD), has been in short supply across the world. Biologics are injections that many folks with autoimmune diseases like RA, lupus, and Crohn’s disease rely on not only to reduce symptoms like pain and inflammation, but also to slow down disease progression. This shortage happened after a study found that it was effective at mitigating serious COVID symptoms. Once the study was published, hospitals around the world began to acquire the medication, reducing the stock available to people like me who depend on it every day. Not being on a DMARD increases the likelihood that the disease will advance. I try not to think about that part, or about the fact that most people hospitalized with serious COVID symptoms aren’t vaccinated.
My medication’s current out-of-pocket price is around $15,000 per year, but with the help of a copay assistance program provided to insured patients through the drug manufacturer, I pay five dollars per month. Most drug manufacturers have similar assistance programs for biologics and other so-called “specialty drugs,” since they are prohibitively expensive and notoriously under-covered by many insurance policies. Before I found this program, my copay was $100. The medicine is a fussy injectable (a needle) that needs to be kept at just the right temperature (cold but not frozen). I will not name my Wonderdrug here out of paranoia that it will affect supply, but before I was on it, I was on the biologic drug, Enbrel, for fifteen years with incredible success. Biologics eventually run out of efficacy, and 15 years is considered a long run.
The end of my Enbrel Era coincided with the first year of my PhD program—not the greatest timing. In my first three years in the program, I cycled through seven, not especially effective, medications before I found current Wonderdrug. Each new medication requires three months of taking it before you’re evaluated for improvement, at which point it’s either declared a dud, a success, or somewhere in between. Biologics often take time to build in your system, but three months is what most insurance companies require before they will approve a different drug. Nearly all the biologics also require a doctor’s appointment, updated bloodwork to check liver function, and a recent TB test. Then you wait for your doctor’s office to submit the paperwork to insurance, and finally you wait for the company’s approval or denial. If approved, you call the specialty pharmacy (you can’t just get these meds at Walgreens). The pharmacy counsels you to be sure you know how to inject yourself and you know the potential side effects, sets up shipment, and then you wait for delivery day. A lot can go wrong in that period, from blood test results to surprise copays or insurance changes, to paperwork issues, denials and appeals, having to try less expensive “first-line” drugs, and even shipping, which must be fast enough to keep the ice from melting and your medicine from reaching room temperature. The process at its fastest has taken about five days, and at its slowest, four months.
I’ve been through this process ten times in the past four years: three months of Humira, three months of Xeljanz, three months of Orencia, and Otezla, and Cimzia, and Simponi. Then along came Wonderdrug in its patented “click pen” syringe. A year-long relief was followed by the first US shortage. As a solution, they switched me to the Wonderdrug in pre-filled syringe form, which was still in stock but required a new prescription and approval. After a few months, this too faced a shortage, this time a global one. I switched to Kevzara, another unsuccessful biologic, for three months, and finally back to Wonderdrug in IV form (out-of-pocket cost for one month: $13,000, of which I was charged $1,300), because it was the first to come back in stock. As I type this, I’m waiting to see if the IV works. This list doesn’t even include the more common DMARD pills I’ve been on, which are frequently added to boost the efficacy of biologics that aren’t effective on their own. Nearly all of these drugs make you more susceptible to infection due to lowering your immune system. I have managed to avoid COVID, mostly due to disciplined masking and long periods of isolation.
Though rheumatoid arthritis affects nearly 14 million people worldwide, according to the World Health Organization, it is a highly individualized disease. The proliferation of biologics is helping more of us, but finding the right medication is still a process of guess-and-check. You might be questioning why someone in my position wouldn’t just give up on medications altogether and try, say, a whole food anti-inflammation diet or acupuncture or regular exercise or more time in nature or therapy or other healthy lifestyle changes. The truth, though perhaps disappointing, is that I do those, too. Though I often wish that I could will my way into a state of pain-free hopefulness with enough discipline or self-reflection, I recognize that this desire for control and certitude is its own arduous self-deception. Sometimes I feel like I’m walking across a never-ending highwire, my movements calibrated and deliberate—the smallest stress or overexertion can mean the difference between a good day and a bad day. And there is never a shortage of stressors in graduate school. I can’t make sense of the fact that in one part of my life I’m doing everything I can to feel better, while in this other part of my life I’m on a path that contributes to feeling worse.
During these four years of trial-and-error, I’ve experienced acute flare-ups that last anywhere from half a day, to (my new record) 13 days. When someone asks me what it feels like, the easiest comparison is the flu. I get a low-grade fever, every joint in my body aches, my most effected joints (balls of my feet, toes, ankles, shoulders, hips, hands) usually swell and become stiff and painful. I begin to lose my voice, and worst of all, I am plagued by a deep and unquenchable fatigue that turns my mind into a foggy mess. I forget basic words; I lose track of what I’m saying mid-sentence. I sometimes lie on my bed and stare into space for hours, occasionally trying to focus long enough to watch tv. What might under better circumstances feel like an enjoyable or mundane task, can transform into a burden, or worse yet, into a reminder of the parts of life I can’t participate in, and which continue on without me. The world is passing by me, I tell my friends. The world is passing by me, I tell my sister. The world is passing by me, I tell myself. When I’m teaching or in conversation with someone, I feel moments of focus and clarity, but as soon as they’re over, my energy is even lower.
What I can and can’t do changes on a daily, and even sometimes hourly, basis, which seems to confuse or frustrate people; I count myself among those same people. In case you’re wondering how I’m managing to type this essay now, it’s because of the steroid prednisone, which I refer to as “the worst miracle ever.” Prednisone can lead to trouble sleeping, insatiable appetite, raised blood pressure, heart palpitations, and the looming terror of having to wean off it, which causes a new kind of exhaustion. I swore I would never take it again after a nearly year-long reliance on it my second year in graduate school, but here I am, betraying my past self, so I can get through this semester. I’ve naively not renewed my disability accommodation because I didn’t predict something of this magnitude, though who could have predicted a pandemic and medication-shortage combo? My department has no protocol for requesting substitute instructors. Because of the difficulty of continuing to teach through my pain and intense fatigue, I consider leaving the program almost every day.
The disability office advises me to get accommodations in place for next fall, a weeks-long process in which I get approval to move a handful of class meetings online. But not much can be done for the remaining six weeks of this spring semester. A nice woman agrees to meet with me over Zoom to offer tips on planning ahead, then advises me to ask a colleague to sub for me. Perhaps you can offer to do their grading in exchange, she suggests. Okay, I say, meaning, yeah right.
If you need a disability accommodation from an academic institution, you must first have your symptoms traced to their origin and named by a doctor, a process that is fraught at best. According to the American Autoimmune Related Diseases Association (AARDA), the average time for an autoimmune diagnosis is just over four years and includes four different doctors. Then your diagnosis must be on the list of legally protected disabilities at your institution. Our protections reward certainty, reward proof from xrays and blood tests and physician’s charted notes; reward bodies that conform to templates written in a language that doctors and lawyers have agreed upon.
I can only tell you my story, which in some ways is a privileged one—my pain is attached to a recognized name; my symptoms and body conform to the medical criteria for a known diagnosis. I also have insurance through my teaching assistantship, and I’m white, which, as studies on systemic racism in healthcare and racial health disparities show time and again, means I’m more likely to be believed, diagnosed correctly, and treated. I have benefited from these systems designed to help people with disabilities, but every time I look through the mirrors they hold up, the glass is broken, the reflection is fragmented. If the medical gaze is capable of turning our bodies into objects, the act of narrating our stories feels like an insistence on being seen as whole.
I’m a poet, currently writing the non-poetry part of my dissertation, which is a critical essay on disability studies, pain, and poetry—more particularly, on how poetry is a genre well-suited to expressions of pain. As I was reading disability theory, I was struck by the omission or elision of pain from many foundational theories and models. While not all disabilities are painful, it seemed strange to me that the most frequent mentions of pain were in recognition of the able-bodied contexts that dominate our physical landscapes—stairs when we need an elevator, doors too heavy to open, parking spots too far away from doors. I wanted to create space for other pains that I felt—not pains from my interactions with the world, pains coming from inside of me. But as my pain and exhaustion increased, and I spent all my energy on lesson-planning and teaching and grading, I was mentally and physically unable to work on my dissertation. The irony is almost unbearable. Theory feels unreal in these moments, like an unattainable luxury. I began to resent even my own ideas about disability and pain.
When a problem goes from acute to chronic, it becomes both more bearable and more unbearable. Bearable because you become accustomed to the pains and learn how to work with them or around them, more unbearable because it feels as though this is how your life will always be. When I’m in a flare, the dissociative feeling adds to a sense of surrealism. Sometimes I think the real me is never coming back, even though I know it’s all the real me. Often, the first sign of a flare is a slight change in my voice, most likely due to how RA affects my larynx, though this is a speculative diagnosis from my rheumatologist. When I’m on the phone with my twin sister, she can even hear the tiniest vocal change before I’m aware of it myself. On days when she asks, “Are you having a flare?” I brace myself and hope that she’s wrong. She’s almost never wrong. It’s like standing on a shore watching a giant wave about to take you out to sea, and not being able to move. Or like watching a spark right before it ignites a forest fire.
I type notes on my Professional Writing class’s cover letters, and my right hand is so stiff that I’m making typos. My fingers start to ache and by the end of the hour the ache has moved up my wrist and forearm. I can feel the fatigue about to roll in—a storm that I’m tracking on the radar, but that’s moving faster than my hands can type. Though I’m right-handed, I peck at the keys with my left hand, which has always been the better of the two. I still need to plan out tomorrow’s class and prepare for my poetry class’s workshop. I close my laptop and start to heave with familiar anxiety. “I can’t, I can’t, I can’t…” I cry to nobody. “I can’t, I can’t, I can’t,” I repeat.
I talk to my academic advisor and let him know I’m struggling to work on my dissertation through my declining health. He has witnessed my health roller coaster firsthand, and he never fails to offer an empathic ear or a reminder that my standards for myself might exceed what is actually necessary to get by. When I tell him that I’m worried I’ll not be well enough to make substantial progress toward my degree over the summer, he tells me that it’s okay to prioritize my health. He tells me that it’s okay if I don’t make the progress that I thought I would. If it weren’t for his encouragement and patience, I might have quit the program from the sheer shame of it all, from the exhaustion of trying to live up to my own judgments. What feels necessary to me, and what has always been a priority, is meeting my obligations to others first. I will arrive to teach prepared and on time. I will show up to office hours and meet deadlines. I will spend my clearest-headed hours on grading papers and writing feedback on students’ poems.
The next day I decide to disclose to my poetry class an abbreviated version of what’s going on. This is the first time I’ve ever made a such a personal disclosure to a class. I struggle with when and how to disclose my RA to people—friends and colleagues and mentors, not to mention love interests. The timing is an art in itself, though I generally wait until disclosing becomes necessary—when the difficulties of not saying begin to outweigh the difficulties of saying.
I’d rather not admit this, but up until a few years ago, it hadn’t occurred to me to consider my RA a disability. Somehow I could discount the chronic pain and debility and suffering because at this point in my life I no longer remember what it felt like without it. And in the tradition of my smalltown New England upbringing, I didn’t want to be a burden or to risk the appearance that I was dwelling on it or wanting attention or special treatment; I feared being set apart or pitied or doubted. I consoled myself with the mantra it could be worse. My RA was a fact that belonged in a footnote, not front and center. Even now, writing this essay, I’m terrified of telling you. Part of me wants to take it all back, to delete these words. But that’s also the part of me that internalized the myth of self-reliance, the part of me that answers with a cheery “I’ve got everything I need, thanks” when friends ask if there’s something they can do. The pandemic has sped up some of these disclosures for those of us who are immunocompromised.
I need to tell my students because it’s getting harder to hide, and I want to offer them an explanation for why I don’t help rearrange the desks into a circle, or why I walk stiff-legged, or why I never write on the board or handwrite on their poems, or why my voice has gone quiet and raspy. It’s not that I’m embarrassed or that I want to keep these things to myself, but that as soon as you mention the word “disability,” I fear that people will see me only through this lens. That it’s loaded with doubt and speculation about my condition or my ability to teach. I fear undermining both my authority and responsibility to my students.
I practice what to say to my class before I leave my apartment, and then, to my own surprise, I actually say it: I have a disability and I’m having trouble accessing medication right now, I tell them. I work to keep my voice from cracking while I explain a few of my limitations, but assure them that there’s no need to worry and I’m still here for them. I love this class and value this shared time and space with you, I say, looking around the room, searching their attentive faces. And I’m not dying! I nearly shout after sensing their collective concern. And we all chuckle uncomfortably and turn to the day’s poems. What I told them is true. The enthusiasm and engagement of these particular students impresses me every week, and I want to be here. I look forward to hearing their thoughts about the readings, of listening to them engage in meaning-making through their own full lives and anxieties. This is not simply a place where I spend my energy; it’s also a place where I get a different kind of energy in return.
In my dissertation, I argue that poetry is an especially flexible genre, and in some ways, ideal for expressing holistic and felt experiences of pain and suffering that go far beyond denotation. However, I recognize that many people in pain, myself included, are not about to speak to their doctors in poetry. Instead, I’ve become fluent in medical lingo, as most people who have lived with a condition for decades are, but this language feels like wearing a mask. It’s full of booby traps and wrong turns, and misunderstandings, and sudden jungles of words you thought you knew, but no longer recognize. It doesn’t feel right or accurate to my experience to medicalize it—to describe my body with words like distal and synovium. They are language operating at its most efficient and functional, stripped of texture or emotion or experience. Stripped of me. In some ways, they are no different than theory.
Elaine Scarry in her now infamous book, The Body in Pain, notes that humans are used to pain that has an object, like a knife sticking out of someone’s chest, a cut or scratch that announces to the world this hurts. We understand that kind of pain because we don’t need any proof of it—it is immediate and an empathic shiver might come over us. But what about when there is no offending object? No blood or visible wound? In these cases, we simply describe the pain as though there were an object responsible, rendering the invisible visible: it’s a stabbing pain, or it feels like someone took a hammer to my knees, or my brain is foggy. In other words, we reach for concrete similes or metaphors. When we craft the terms of pain, we’re already thinking like poets. “Make this more tangible; I want to see it; more sensory description; try some figurative language,” I write on draft after draft of student poems. But as Susan Sontag teaches us in Illness as Metaphor, the metaphors we use are not always helpful.
Simile: When I was first diagnosed with JRA as a kid, my doctor explained it to me something like this: It’s like having an allergy to very specific parts of yourself. That specific part is known as synovial fluid, which your body attacks, and that’s what causes your pain. This is the kind of explanation that doctors like to give children, assuming they won’t take the comparison too literally. Wow, I remember thinking, my own body doesn’t even recognize me as me.
I have a hard time accepting essays that insist on some kind of restitution, particularly essays about disability. Making sense of the chaos of pain, cleaning up the debility, putting a bow on mortality, are very American, Capitalistic endings. Bodies breaking down are less capable of the kinds of work (and overwork) that many of our institutions value and reward; academia is certainly no exception. Like the rhetoric of cold medicine commercials tells us: please stop having these problems so that you can get back to fulfilling your duties and not make us think about the terrifying contingency of our human forms. But like most good writing plans, my anti-restitution plan has gone out the window. Just two days ago, months after I began writing this essay, I got word that my medication is back in stock. In fact, it’s due to arrive today. I have seen though, that even our best medical and legal solutions are contingent, interdependent, and only part of the solution for the many of us who are invisibly disabled, living with chronic pain and fatigue, and striving within academic institutions.
The term “invisible disability” is commonly used to describe disabilities that are not readily apparent to the eye, but I want to push back on this term. When you pay close attention, most disabilities become visible. Poems are not encoded messages that we’re meant to decipher, I frequently remind my students, they are language organized in ways that demand a different kind of attention. And so it is with invisible disabilities: To me, and probably to people who spend enough time with me, or to the particularly observant, my disability is not simply encoded, it is visible, just as it’s visible to my doctor—my swollen fingers, my stiff stride, my bedroom covered in dirty laundry, the way I open a door or hold a pen or get up from a chair, the events that I’m absent from, or how I judge a place by its availability of comfortable seating. “You look good,” people like to say when I tell them I’m having a flare, as if this somehow overwrites the fact of my unwell body or can conjure a different me into the present. I don’t blame people for wanting to push away the discomfort or awkwardness, we humans do this a lot—when faced with another’s illness or grief or anxiety or despair.
The privilege of passing as able-bodied is rivaled only by the pain of passing as able-bodied; I might have contorted myself enough to hide my disability from students or professors or friends, but in order to start feeling better, I had to first stop trying to hide my limitations from myself. I had to stop annexing my disability from the me who shows up in the world. By trying so hard to pass, to perform able-bodiedness, I not only made my life less manageable through the necessity of overcompensation, but by choosing invisibility I also did a disservice to other people struggling to get their needs met while navigating a disability. I still have a long way to go—and a dissertation to finish—so to say that I’ve transformed would be premature. But I want to imagine a younger version of myself reading these words with you. I want to imagine her feeling seen, and maybe even a little hopeful. I want to imagine her beside me, bumbling our way toward wholeness.
***
Rumpus original art by Dmitry Samarov
