Why the art of Long COVID and ME can be hard to find

Long COVID, ME, unfinished work, and the hidden bodily costs behind what eventually reaches public view

A zoomed-out photograph of a room in an art gallery; across black walls are mounted a row of surgical masks electroplated in nickel. The masks are illuminated with light and reflect brightly in the dark space. — *No Silver Linings (Long Hauling)*: Nickel-plated surgical masks from COVID-related doctors’ appointments (2020-2021), Courtesy of Pato Herbert

Say “AIDS and art,” and the images seem to summon themselves.

Silence=Death’s inverted pink triangle; Gran Fury’s Kissing Doesn’t Kill on buses and billboards; Keith Haring’s dancing figures and radiant babies; Lola Flash’s queer Black photographs; Felix Gonzalez-Torres’s disappearing piles of candy; Marlon Riggs’s exuberant snap-queen sequence in Tongues Untied.

Together, they carry grief, sex, stigma, government abandonment, and the intimate devastation of lovers disappearing faster than institutions could learn their names. AIDS made visibility a battleground. Art and activism bled into one another. Mourning lived alongside pleasure, militancy, and the ordinary work of keeping one another alive.

Name myalgic encephalomyelitis (ME), Long COVID, and related conditions — as I did when I started researching my new book project — and something different happens. The art does not rush in. Time tilts the comparison, too.

Over four decades, the AIDS archive has taken shape around images made in the midst of the crisis. They came from people who were sick, grieving, or caring for the dying, often with no time to waste. The cultural record of Long COVID and related illnesses is still taking shape, often under severe constraints of energy and capacity. Long COVID cuts across populations, even as queer and trans people face disproportionate risk. Within Long COVID’s broader field, queer and trans artists and knowledge makers keep surfacing, building forms of understanding around what medicine misses.

Much of this understanding circulates through private Facebook groups, webinars, Zoom rooms, newsletters, and advocacy networks. The artwork follows a different but perhaps parallel path. It emerges from bedrooms and personal sites, takes shape in online exhibitions, or arrives slowly, interrupted, delayed, sometimes never finished.

What happens to the cultural record of a health crisis when illness itself keeps interrupting the work?

What happens to the cultural record of a health crisis when illness itself keeps interrupting the work?

Once I began following those traces, the record of Long COVID, ME, and related illness artwork didn’t look absent; it looked dispersed. Jennifer Brea assembled her landmark documentary Unrest largely from bed. #MillionsMissing began with people sending in shoes they could no longer wear; organizers displayed them publicly to represent people missing from daily life because of ME. Virtual galleries A Quiet Storm and This Is CFS Art hold work that physical galleries may never receive. I had been looking for a consolidated public archive. What I found instead was one organized by interruption, its gaps and delays partly produced by the illnesses it records.

What gets lost when illness interrupts the work itself? This question followed me into Breathing in Common, the book I’m now writing about queer, trans, and disabled artists of color making perceptible the unequal conditions of breathable life. And my own experience of neuroimmune illness brought this question closer to the skin.

Before illness becomes something art depicts, it is already shaping how the work gets made. It sets the hours a body has, the materials it can tolerate, the concentration it can hold. It can determine whether the artist gets into the room at all.

I use “neuroimmune illness” loosely to describe overlapping terrain including Long COVID and related chronic conditions. My own cluster includes hypermobile Ehlers–Danlos syndrome (hEDS), mast cell activation syndrome (MCAS), ME, migraine, and widespread pain. I write from that overlap. Anthropologist Emily Lim Rogers calls the unpaid labor of living with ME and securing recognition and care for it “sick work.” Her phrase catches something medical charts rarely do: Illness can fill a day with work that leaves behind almost nothing to show for it.

That burden also shapes who gets to keep making art while sick, and whose artwork makes it into public view. The ability to work from home, take leave, find a supportive doctor, buy cleaner air, or lie down without calculating the cost is unevenly distributed. Illness does not arrive on level ground. Race, gender, and class are already there, sorting exposure from protection, rest from endurance. They shape whose pain becomes evidence and whose gets routinely dismissed.

Those inequalities factor into the ordinary mechanics of a sick day. Dysautonomia can make standing a physiological demand. With ME, effort can provoke post-exertional malaise (PEM) hours later. You think you got away with it. You have not. The body sends its bill late.

I have agreed to things during a good week and arrived at the deadline in an entirely different body. Capacity returns, and I rush toward it because so much of my life seems to have been waiting for me to come back. I can write for hours again. I reopen the chapter. I say yes to the lecture. So I spend today’s spoons. Sometimes tomorrow’s, too. Then PEM arrives. My neck gives out. The laptop stays closed beside me.

Living with those limits also means depending on other people. Disability justice has long made that interdependence a political starting point. Community organizer Mia Mingus calls one form of it “access intimacy.” It can look utterly ordinary: a ride home, food left at the door, someone carrying what another body cannot.

Institutions are remarkably good at losing sight of these supports. The art world’s clock is built to track a body that keeps replenishing itself. It assumes a body that boards the plane, gives the talk, installs the show, then answers email the next morning as though nothing has been spent. Academic life, where I work, shares the same fantasy. Care stays offstage. Recovery happens overnight. The body is restored before anyone sees the cost. This is one way ableism gets written into the record: shaping what counts as sustained practice and who gets recognized as having a serious career.

PEM scrambles that calendar. Give the lecture and lose the week after it. Finish the artwork only to find you cannot install it. Publish an essay whose polish hides the days when language would not come. The good stretch was real. That is part of the confusion. The lecture happened, the essay went out, the exhibition moved forward. Institutions register what appeared and lose what followed. Fall out of view often enough, and sticky adjectives begin to gather around you: unreliable, difficult, flaky, unserious.

I have agreed to things during a good week and arrived at the deadline in an entirely different body.

Some artists make those hidden conditions impossible to miss. In Hanna Cormick’s The Mermaid, atmosphere enters the performance as material. Living with EDS, MCAS, and Postural Orthostatic Tachycardia Syndrome (POTS), Cormick appears in a mermaid tail and full respirator, tethered to oxygen and an IV saline drip. During Australia’s 2020 bushfire summer, smoke-polluted air could trigger Cormick’s MCAS, making the atmosphere in which she performed physically hazardous. The respirator and other medical supports make her appearance possible in the first place.

Medical care takes material form in Pato Hebert’s work too. Across twenty-six appointments, he kept the disposable masks handed to him, then electroplated them in nickel for No Silver Linings (Long Hauling). A queer artist-educator and longtime HIV organizer living with Long COVID, Hebert turns that growing collection of disposable masks into a record of care-seeking. He later called Long COVID his “prolific coauthor,” a mordant phrase for an unwanted collaborator that keeps revising the terms of creative work. It changes how a day can be spent and leaves some work unfinished.

Years before developing Long COVID, artist and filmmaker Alisa Yang was already making chronic illness and the demand for productivity part of her work. She has lived with ME and fibromyalgia since 2018. Her 2023 exhibition, sometimes doing nothing leads to something, filled a blue-lit gallery with a life-size video of Yang practicing meditation, a looping “blue screen of death,” and a sculpture in which an egg supports a slab of concrete. The exhibition asks what stillness might mean when productivity can no longer organize a life. Time that might otherwise look empty acquires another kind of weight.

In A Quiet Storm, that altered sense of time stretches even further. Founded by artist Greta Granö, the online collaborative gallery began as a daydream while she was resting in bed. Among the artists it presents is Finnish photographer Niko Suvisto, who made the images in an exhibition called In the Absence of Light during a period of very severe ME in 2022 and 2023. His black-and-white photographs return the darkened room in fragments: a hand resting on a pillow, an eye mask, a wheelchair, his mother briefly caught by the camera’s flash. She was his sole caregiver when no other support was available. Only later did those images become an exhibition; Suvisto writes it took him three years to process what had happened, and the project was completed in 2025.

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Stillness can become part of the work of creating art without turning illness into a gift. I want more health, less pain, more of the world. Recovery can sometimes come with another pressure. Get well enough to return to work at the old pace, as though the life illness interrupted was merely waiting to resume. Queer, trans, and disabled lives have long slipped sideways from that timetable, living by rhythms it cannot easily accommodate. Disability studies scholar Ellen Samuels writes of “sick time,” which doubles back, flares, sometimes disappears.

Hebert’s practice also shows what can disappear from the record. In an early 2021 interview, he recalled that after contracting COVID-19, he became too sick to work in his studio. Paintings he had been working on for a show stopped in place; sculpture became impossible, and there were periods when he could not even write in his journal. Those absences matter, even when they leave no finished object behind.

Recognizing unfinished work as part of the record does not make incompletion a virtue. Illness takes things ruthlessly. Capacities and pleasures disappear; whole futures that once felt ordinary enough to count on become unreachable. Some losses do not resolve into lessons. They just remain losses. I can want back what illness has taken without accepting that recovery should be measured by how quickly a body can be made useful again.

I began this essay wondering where the archive was. Maybe I was looking for something too finished. The record is messier. Work gets made from bed. Projects are taken up again months later; plans change; someone carries what another body cannot. Some of it becomes art. Other work remains unfinished or simply disappears. Certain absences announce themselves in rows of empty shoes. Others leave almost nothing behind — a laptop closed for a week, a painting stopped halfway through.

And still, around those absences, people go on making things, carrying one another through, finding forms for lives the old calendar was never built to hold.

And still, around those absences, people go on making things, carrying one another through, finding forms for lives the old calendar was never built to hold.

Ronak K. Kapadia is an interdisciplinary scholar, writer, and curator at the University of Illinois Chicago whose work moves across critical ethnic studies, queer studies, contemporary art, and the politics of war, illness, and survival. He is the author of Insurgent Aesthetics: Security and the Queer Life of the Forever War and coeditor of Surviving the Long Wars: Creative Rebellion at the Ends of Empire. He is currently writing Breathing in Common: Minoritarian Aesthetics and the Respiratory Commons.

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