Long-Haulers Are Trying to Define Themselves

Imagine you need to send a letter. The mailbox is only two blocks away, but the task feels insurmountable. Air hunger seizes you whenever you walk, you’re plagued by dizziness and headaches, and anyway, you keep blanking on your zip code for the return address. So you sit in the kitchen, disheartened by the letter you can’t send, the deadlines you’ve missed, the commitments you’ve canceled. Months have passed since you got COVID. Weren’t you supposed to feel better by now?

Long COVID is a diverse and confusing condition, a new disease with an unclear prognosis, often-fluctuating symptoms, and a definition people still can’t agree on. And in many cases, it is disabling. In a recent survey, 1.6 percent of American adults said post-COVID symptoms limit their daily activities “a lot.” That degree of upheaval aligns with the Americans With Disabilities Act’s definition of disability: “a physical or mental impairment that substantially limits one or more major life activities.”

But for many people experiencing long COVID who were able-bodied before, describing themselves as “disabled” is proving to be a complicated decision. This country is not kind to disabled people: American culture and institutions tend to operate on the belief that a person’s worth derives from their productivity and physical or cognitive abilities. That ableism was particularly stark in the early months of the pandemic, when some states explicitly de-prioritized certain groups of disabled people for ventilators. Despite the passage of the ADA in 1990, disabled people still confront barriers accessing things such as jobs and health care, and even a meal with friends at a restaurant. Most of our cultural narratives cast disability as either a tribulation to overcome or a tragedy.

Consequently, incorporating disability into your identity can require a lot of reflection. Lizzie Jones, who finished her doctoral research in disability studies last year and now works for an educational consultancy, suffered a 30-foot fall that shattered half of her body a week before her college graduation. She told me that her accident prompted “radical identity shifts” as she transitioned from trying to get the life she’d imagined back on track to envisioning a new one.

These are the sorts of mindset changes that Ibrahim Rashid struggled with after contracting COVID in November 2020, when he was a graduate student. He dealt with debilitating symptoms for months, but even after applying for disability accommodations to finish his degree, he “was so scared of that word,” he told me. Rashid was afraid of people treating him differently and of losing his internship offer. Most terrifying, calling himself disabled felt like an admission that his long COVID wasn’t going to suddenly resolve.

[Jennifer Senior: What not to ask me about my long COVID]

Aaron Teasdale, an outdoors and travel writer and a mountaineer, has also been wrestling with identity questions since he got COVID in January 2022. For months, he spent most of his time in a remote-controlled bed, gazing out the window at the Montana forests he once skied. Although his fatigue is now slowly improving, he had to take Ritalin to speak with me. He was still figuring out what being disabled meant to him, whether it simply described his current condition or reflected some new, deeper part of himself—a reckoning made more difficult by the unknowability of his prognosis. "Maybe I just need more time before I say I’m a disabled person,“ he said. “When you have your greatest passions completely taken away from you, it does leave you questioning, Well, who am I?

Long COVID can wax and wane, leaving people scrambling to adapt. It doesn’t mesh with the stereotype of disability as static, visible, and binary—the wheelchair user cast in opposition to the pedestrian. Nor does the fact that long COVID is often imperceptible in casual interactions, which forces long-haulers to contend with disclosure and the possibility of passing as able-bodied. One such long-hauler is Julia Moore Vogel, a program director at Scripps Research, who initially hesitated at the idea of getting a disabled-parking permit. “My first thought was, I’m not disabled, because I can walk,” she told me. But if she did walk, she’d be drained for days. Taking her daughter to the zoo or the beach was out of the question.

Once she got over her apprehension, identifying as disabled ended up feeling empowering. Getting that permit was “one of the best things I’ve done for myself,” Vogel told me. She could drive her kid to the playground, park nearby, and then sit and watch her play. After plenty of therapy and conversations with other disabled people, Rashid, too, came to embrace disability as part of his identity, so much so that he now speaks and writes about chronic illness.

[Read: The future of long COVID]

Usually, the community around a disease—including advocacy among those it disables—arises after scientists name it. Long COVID upended that order, because the term first spread through hashtags and support groups in 2020. Instead of doctors informing patients of whether their symptoms fit a certain illness, patients were telling doctors what symptoms their illness entailed. And there were a lot of symptoms: everything from life-altering neurocognitive problems and dizziness to a mild, persistent cough.

As long-COVID networks blossomed online, members began seeking support from wider disability-rights communities, and contributing fresh energy and resources to those groups. People who’d fought similar battles for decades sometimes bristled at the greater political capital afforded to long-haulers, whose advocacy didn’t universally extend to other disabled people; for the most part, though, long-haulers were welcomed.

Tapping into conversations among disabled people “has shown me that I’m simply not alone,” Eris Eady, a writer and an artist who works for Planned Parenthood, told me. Eady, who is queer and Black, found that long COVID interplayed with struggles they already faced on account of their identity. So they sought advice from disabled Black women about interdependence, mutual aid, and accessibility, as well as about being dismissed by doctors, an experience more prevalent among women and people of color.

Disabled communities have years of experience supporting people through identity changes. The writer and disability-justice organizer Leah Lakshmi Piepzna-Samarasinha told me that when she was newly disabled, she was dogged with heavy questions: Am I going to be able to make a living? Am I datable? Her isolation and fear dissipated only when she met other young disabled people, who taught her how to be creative in “hacking the world.”

For long-haulers navigating these transitions for the first time, the process can be rocky. Rachel Robles, a contributor to The Long COVID Survival Guide, told me she spent her early months with long COVID “waking up every day and thinking, Okay, is this the day it’s left my body?” Conceiving of herself as disabled didn’t take away her long COVID. She didn’t stop seeing doctors and trying treatments. But thinking about accessibility did inspire her to return to gymnastics, which she’d quit decades earlier because of a heart condition. If she couldn’t lift her hands over her head sometimes, and if a dive roll would never be in her future, then so be it: Gymnastics could be about enjoying what her body could do, not yearning for what it couldn’t. Before she identified as disabled, returning to gymnastics “was something I would have never, ever imagined,” Robles said. And she never would have done it had she remained focused only on when she might recover.

[Read: Long COVID is being erased—again]

Hoping for improvement is a natural response to illness, especially one with a trajectory as uncertain as long COVID’s. But focusing exclusively on relinquished past identities or unrealized future ones can dampen our curiosity about the present. A better way to think about it is “What are the things you can do with the body that you have, and what are the things you might not know you can do yet?” Piepzna-Samarasinha said. “Who am I right now?”

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