Long COVID has been dubbed a “mass disabling event.” Axios reports that close to 24 million Americans have Long COVID, with more than 80% having difficulty making it through the day. In the podcast The Assignment, host Audie Cornish speaks with Monica Verduzco-Gutierrez, M.D., disability advocate Imani Barbarin, and disabled Long COVID patient and former occupational therapist Alexis Misko about their disease experiences.*

The difficulty with Long COVID

Like Misko, many patients with the post-viral illness have experienced the frustration of having their symptoms dismissed by the medical community. It’s a difficult disease to diagnose when testing comes back negative. Barbarin says America is especially unprepared to manage the millions who are now disabled from the disease.

How do patients adapt to a potential long-term disability? Polio, for example, was a mass disabling event that left lasting marks on society. While we don’t yet know Long COVID’s ultimate fallout, patients are saying it should not—cannot—be ignored.

Still haven’t figured it out

“[P]eople with Long COVID very much look like patients who have brain injuries,” says Verduzco-Gutierrez, who heads the post-COVID Recovery clinic at the University of Texas at San Antonio. There’s still “definitely some skepticism” from the lack of testing ability, but the CDC and the World Health Organization (WHO) view Long COVID as a clinical diagnosis. Listening to the patient is vital to understanding what’s happening.

Unfortunately, it’s “definitely easier” for a doctor to be skeptical, since even MRIs don’t show inflammatory markers in the brain and, despite the plethora of Long COVID research coming out, findings like micro clots don’t have tests that can be immediately applied for diagnostic purposes. “It’s really tough for patients,” she says, “and it’s tough for us physicians who are doing this work and want to help the patients.”

Long COVID disability

The physical suffering of people with Long COVID is just part of the larger fallout, however. Between two and four million Americans are out of work from Long COVID, Cornish says. Providing disability benefits for them is an issue that the Biden Administration is striving to address. 

Long COVID now falls under the Americans with Disabilities Act (ADA), but the requirements are rigid for a condition with no available test and the wait for benefits is “notoriously long.” Along with this frustration, Barbarin says disabled people quickly lose control over their own stories and are no longer seen as reliable explainers of what’s happening to them. Having cerebral palsy herself, she feels disabled people have been overlooked.

Misko, who lay on her couch during the interview to conserve energy for basic household tasks, says that as an occupational therapist, you can’t truly appreciate what the disabled are experiencing. She hasn’t been unable to work since getting infected in October 2020. A trip to the grocery store a month after an infection sent her reeling from post-exertional malaise and everything went downhill from there. 

Echoing Verduzco-Gutierrez, she feels that much of what she’s experiencing is like an ongoing concussion or brain injury, or a perpetual hangover. Being a former healthcare professional hasn’t helped her cause. “[O]nce you become sick, your expertise is erased in the minds of other people immediately.”

Gaslighting

She felt “gaslit” by clinicians who trivialized her symptoms, Misko says. She quickly learned which doctors were worthy: those aware of the current research and “humble enough to say, ‘I don’t really know what to do about this, but we’ll figure it out.’” Even her own primary care provider wanted to initially prescribe antidepressants.

Barbarin notes that gaslighting can also depend on a person’s appearance. An overweight person with fatigue may simply be told to lose weight, whereas a slender, healthy-looking person with fatigue may be approached entirely differently.

Advice for people disabled by Long COVID

Barbarin recommends people pace themselves. The disability system has been neglected and is very hard to navigate, but advocates are making progress. She says to rely on members of the greater disability community, since many of them have spent years seeking answers to questions that COVID long-haulers are now asking. 

*Cornish, A. (Host). (2023, January 12). The Long Arc of Long COVID [Audio podcast episode]. In The Assignment with Audie Cornish. https://www.cnn.com/audio/podcasts/the-assignment/episodes/af5bc130-1e31-4960-9759-af870118cc0b