ItRachel Bean took some time to accept the fact that she had Long COVID. Bean (35 years old) was diagnosed with the disease in May 2020. Experts still believe that COVID-19 can cause life-threatening illnesses or milder symptoms which resolve over a period of time. 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. She persevered despite the fact that many of her symptoms were different from hers. 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 believe that some Long COVID cases may not be diagnosed because they aren’t recognized. “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.”
Long COVID is not a diagnosis for every condition. Every day thousands of people are diagnosed with COVID-19. Many recover quickly. 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.
Many people don’t realize that Long COVID can affect more people. The National Center for Health Statistics recently reported that approximately one-fifth of all Americans who have had COVID-19 diagnosed in the past are suffering from Long COVID symptoms. Many others could have the condition and not even know it.
It is as simple as taking a swab of your nose to test for COVID-19. Long COVID diagnosis is harder because no one test can diagnose 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. However, fewer patients are diagnosed properly due to factors such as not seeking treatment, missing symptoms, and doctors entering the information into patient records.
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.
This is because these symptoms can be easily simplified. 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.
Studies that screen people for cognitive impairment and post-COVID fatigue show a higher prevalence than those who use subjective measures. Davis states that this finding indicates some people may not recognize or reduce their symptoms.
The most common reason people of color get overlooked is Dr. Zeina Chowali, director of Massachusetts General Hospital neuropsychiatry clinics and co-author on a study about 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.
Alwan’s study, which has not been peer-reviewed yet, found that nearly all long-haulers suffer from stigma. 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. Alwan states that it is crucial to get a diagnosis for several 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.
Long COVID can be treated more effectively by improving public awareness, diagnosis, as well as education. This could make it easier for people to speak up about their condition. “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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