It took a long time for Rachel Bean to fully accept that she has Long COVID. Bean, 35, caught the virus in May 2020, when most experts were still saying that COVID-19 either causes life-threatening illness or milder symptoms that resolve within a few weeks. Bean’s acute case was asymptomatic—so as time passed and she felt unwell, with a rapid heart rate and unrelenting fatigue, she figured there had to be another explanation.
Then, in August 2020, she joined an online Long COVID support group and found that plenty of other people hadn’t fully recovered from COVID-19, either. But many of their symptoms seemed different than hers, so she kept pushing through. Finally, in late 2020—shortly before her illness forced her to leave her job as a social worker—Bean asked her doctor to refer her to a Long COVID treatment clinic.
Today, Bean is struck by how many people still don’t realize that their health issues could be signs of Long COVID. She’s talked to people who insist they’ve fully recovered from COVID-19, but also complain of classic Long COVID symptoms like fatigue and cognitive dysfunction. “People aren’t necessarily connecting the dots,” Bean says.
Experts say that lack of recognition could be causing some Long COVID cases to go undiagnosed. “People are bad at correlation if they’re not thinking about it all the time,” says Hannah Davis, a machine learning expert who is part of the Long COVID Patient-Led Research Collaborative. “When you had COVID…and then two months later you stop being able to drive, you’re not necessarily going to tie it to that.”
Not every health issue is a sign of Long COVID. Thousands of people around the world are diagnosed with COVID-19 every day, and many recover without lingering issues. Others experience health problems following but unrelated to their infections, because all the things that made people sick before the pandemic haven’t gone away.
But Long COVID affects more people than many realize. In the U.S. alone, roughly one in five adults with a known previous case of COVID-19 currently has Long COVID symptoms, according to recent data from the National Center for Health Statistics. Others could be living with the condition without realizing it.
Testing for COVID-19 is now as easy as swabbing your nose at home. Diagnosing Long COVID is more complicated, as no single test can detect it.
Public-health groups define the condition slightly differently, but their criteria usually boil down to having symptoms that didn’t exist prior to a confirmed or suspected SARS-CoV-2 infection, last at least a couple months after infection, and can’t be explained by anything else.
In the summer of 2020, an estimated half of cases weren’t formally diagnosed, according to an article co-authored by U.K. researcher Trish Greenhalgh. It’s hard to say exactly what that percentage is today, but it’s probably still significant. There are an estimated 2 million people with Long COVID in the U.K., which by Greenhalgh’s estimate means each full-time general practitioner there cares for about 65 long-haulers. But fewer are properly diagnosed, due to factors like patients not seeking care, doctors missing the condition, or doctors entering it into patient records as something else, she explains.
Elisa Perego, an honorary research fellow in archaeology at University College London who is credited with coining the term “Long Covid” to describe her own condition, says there’s another problem: many people genuinely have no idea they might have Long COVID.
Policymakers, public-health officials, and the media “have often portrayed covid as a short, flu-like disease, especially in the young,” Perego wrote in an email. As a result, people might not make the connection between a case of COVID-19 and health issues months later, especially if they had a mild initial illness or are fully vaccinated; other people may have been asymptomatically infected or got a false-negative test result, so they don’t know they had COVID-19 at all.
Long COVID also isn’t always a linear condition. Some people catch COVID-19 and never fully recover, while others seem to get better and then relapse—sometimes multiple times.
There’s also a common misconception that Long COVID symptoms are a continuation of the issues people experience right after getting sick, like coughing or fever. That’s the case for some people, but many others develop new symptoms, including fatigue, chronic pain, and neurological or cognitive issues. “It is commonly more than one symptom and commonly more than one system in the body,” says Nisreen Alwan, an associate professor in public health at the U.K.’s University of Southampton who has had Long COVID herself.
These symptoms are also often oversimplified. Labels like “fatigue” or “brain fog” don’t always capture the more distinctive experiences of long-haulers—like crashing after physical activity (known as post-exertional malaise) or experiencing cognitive dysfunction such as memory loss. Plus, media coverage doesn’t always reflect the range of severity associated with Long COVID, focusing on only the most dire cases. If people don’t see their experiences reflected in news articles or lists of symptoms, they might assume something else is going on, Alwan says.
Research shows that more people are found to have post-COVID fatigue and cognitive impairment when studies screen for these symptoms using objective, as opposed to subjective or self-reported, measures. That finding suggests some people either miss or minimize their own symptoms, Davis says.
People of color seem most likely to be missed, says Dr. Zeina Chemali, director of neuropsychiatry clinics at Massachusetts General Hospital and co-author of a recent study on Long COVID symptoms. Three-quarters of the people in her study were white, educated women, which “speaks volumes about the disparities in care and access,” she says.
While some people don’t realize they could have Long COVID, others refuse to accept it—and ableism plays a part in that, Perego says. “Discrimination of disabled people in society and the fear of being permanently ill may render it more difficult to accept prolonged disease and the risk of never recovering,” she wrote.
Almost all long-haulers experience stigma at some point, according to a study Alwan co-authored that has yet to be peer-reviewed. That could mean stigma from others—like loved ones being uncomfortable with or not believing a Long COVID diagnosis—or internalized stigma, like being embarrassed about one’s illness or physical limitations.
The medical establishment often doesn’t make matters easier, as some patients still face disbelief or a lack of knowledge from their doctors. “This is an area where you really have to be on top of research,” Davis says. “Your average clinician just doesn’t seem to be doing that,” which leads to cases being missed, dismissed, or misunderstood.
Even people who are correctly diagnosed with Long COVID don’t have great treatment options; there is no known cure for the condition, though some of its associated symptoms can be managed. But Alwan says getting a diagnosis is important for other reasons. It could make people eligible for disability benefits and sick pay, and a diagnosis might prompt a patient’s physicians to do more thorough physical exams that could uncover treatable issues.
Better recognition, diagnosis, and public education about Long COVID could help people who might currently be suffering in silence. “The fear is that you might be missing those most in need of support,” Alwan says. “It might be that people recognizing they’ve got Long COVID are not the only people who really need access to care.”
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Contributor: Jamie Ducharme