t 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 a 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.”