Long-Haulers Are Trying to Define Themselves

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…

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