In/visible
I’ve never liked the term “invisible disability”. It suggests that sight is necessary to perceive difference or need, that the fault is on the disability for it’s subtlety and the onus on the disabled to make themselves known, not those around them to perceive and observe and adapt. To be seen is a poor stand-in for the many ways we perceive and understand each other beyond sight and an absurd one for a virus that can damage vision through hyperinflammation in the retina, retinal artery blood clots, and convergence insufficiency.
Historically, visibility has come with risks of ill-treatment or further isolation: Judith Heumann, a lifelong disability activist and polio survivor, described being denied enrolment in public school in the 1950s because, in her wheelchair, she was a “fire hazard”. Discrimination is one reason patients still delay using mobility aids long past the point they are needed. Post-viral illness can be both highly visible or invisible, depending on the viewer, but that spectrum is not aligned to severity. Patients using wheelchairs, canes, portable oxygen tanks, or braces for hypermobility or spinal damage are often more seen than those sequestered at home, bedbound, and unable to tolerate screens. The old fashioned drawing room used to be called a “withdrawing room”, where one could safely withdraw to one’s innermost circle away from windows; the sick room it’s own isolated and easily fumigated chamber separate from bedrooms for those wealthy enough to have space.
Some of us can, sometimes, choose how visible we wish to be, how much we want to hide our symptoms or signal them, whether in asking for a seat on the bus, masking in close quarters, or managing our disability publicly the casual way one might pop a mint or blow one’s nose or put on reading glasses. I can sustain a veneer of tachycardic normalcy while making pancakes or trying not to faint, and sometimes it is easier to do so than to field questions or offers of help. On Tiktok @lilygschubert has been video-documenting her “firsts” since emerging from being bedbound, and the enormous behind-the-scenes labour and trial-and-error attempts necessary for her body to handle a trip to the beach or bake a cake.
Internationally, Long COVID is far more visible, in the sense of political, public, and media attention, than nearly any post-viral illness today other than AIDS or polio, the subject of moonshot legislation to fund research and community advocacy calling on the government not to dismantle wastewater monitoring. But it is not sufficiently or accurately visible to prompt necessary changes to public health policy that might protect against new cases or complications, despite clear evidence. Research from the National Bureau of Economic Research found that if all U.S. states had imposed pandemic requirements (masks, vaccines etc) similar to those in the 10 most restrictive states, excess death would have been an estimated 10-20% lower than the 1.18 million in 2020-2022. New research in rodents from the University of Colorado found that COVID might produce a “long-term priming or sensitization of neuroinflammatory processes” such that repeat infections or other “inflammatory insults” affronting our systems hit harder. The science of resetting the body, of rewinding time and taking back things said in the heat of the moment is still emerging.
To write publicly about illness is a unique kind of visibility, readable by anyone who seeks your work out or stumbles upon it, a repository of intimate patient data with an N of 1. There are people who read this essay series with silent weekly discipline, sometimes even subtly in my presence at events; those who subscribe in solidarity but never open an email; those who cite me in academic research or set aside their work to open it immediately on reception; those who read and reread and then turn up on my doorstep or message me questions, haunted by something I said.
I pride myself on perceptiveness — a quick study in the theory of new lovers and friends and professional contacts. I can clock TBI, POTS, EDS, an alphabet soup of zebra diagnoses, often before people’s doctors; the tell-tale fogginess after an infection or brain injury that suggests further complications; integrity of action and intent; the delicate skittishness of those still heart-broken; the quiet interest of someone making eyes at me, but not a move.
There is a potential turn in this essay here, if I want to take it, to femme invisibility — the argument that queer femmes are often not read as queer, even by their own community or prospective dates, unless on the arm of a masc. I could hook it to challenges in the AIDs crisis for public health messaging to reach populations other than gay men, or a metaphor on masking as flagging, the risks and benefits of visible queerness when cruising or in the workplace, but I have never liked the term either. Femme gender can be hypervisible and aesthetically loud or intentionally subtle. How that reads and is desired in community and outside of it is layered with racism and misogyny and ableism. Another problem of perception, not presentation, layered non-consensually on the body.
If you are queer and you do not read me as queer, that is a failure of perception on your part, and your loss. If you do not perceive ambulatory Long COVID patients as disabled, halfway through Year 5 of an ongoing pandemic, if you remain incurious about their experience, you are deeply misunderstanding the nature of a virus that can cause a devastating inflammatory insult and disability to anyone.
Writing has been imperative to understanding my situation, both scientifically and emotionally, even when it was difficult. A partial compensation for years lost to isolation and silence. As early as April 2020, still so sick I could not perceive what was happening to me or leave my bed, I wrote in This Magazine: “As a researcher, I feel like I should be commenting on this situation….But I have been sick—as so many of us are and will be in the coming months—and overwhelmed with the need to rest and the labour of caring for myself while living alone; managing a virus that neither my body, my bloodline, or the collective body politic has ever experienced.” At the time, I read and re-read Laurie Penny’s article for Wired describing the urge to be productive in the early pandemic and to publicly, visibly document that productivity as: “processing immense, unknowable collective catastrophe by escaping into smaller everyday emergencies” such as self-imposed deadlines.
I write this series intentionally openly and outside of paywalls, because any awkwardness that visibility poses is far outweighed by the benefit of making research available to patients and their caregivers and clinicians. A better explanation for those curious than I could ever articulate on the fly — both pathophysiologically and in personal narrative — and breadcrumbs for myself if ever my memory fails again.
The Impairing Curse is a long-form, serialized experiment in personal essay, science journalism, policy analysis, and poetry. To start at the beginning and read it in order, go to the first essay or read about the aesthetics and labour of illness, and the failures of public health. To support this project, share it online or subscribe. The series is intentionally not behind a paywall, to ensure broad access to patients and timely circulation of information in our evolving public health crisis, but paid subscriptions are welcome.