Add This to the List of Long COVID Symptoms: Stigma
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Jan. 13, 2023 â People with long COVID may have dizziness, headaches, sleep problems, sluggish thinking, and many other problems. But they can also face another problem â stigma.
Most people with long COVID find theyâre facing stigma due to their condition, according to a new report from researchers in the United Kingdom. In short: Relatives and friends may not believe theyâre truly sick.
The U.K. team found that more than three-quarters of people studied had experienced stigma often or always.Â
In fact, 95% of people with long COVID faced at least one type of stigma at least sometimes, according to the study, published in November in the journal PLOS One.Â
Those conclusions had surprised the studyâs lead researcher, Marija Pantelic, PhD, a public health lecturer at Brighton and Sussex Medical School.
âAfter years of working on HIV-related stigma, I was shocked to see how many people were turning a blind eye to and dismissing the difficulties experienced by people with long COVID,â Pantelic says. âIt has also been clear to me from the start that this stigma is detrimental not just for peopleâs dignity, but also public health.â
Even some doctors argue that the growing attention paid to long COVID is excessive.Â
âItâs often normal to experience mild fatigue or weaknesses for weeks after being sick and inactive and not eating well. Calling these cases long COVID is the medicalization of modern life,â Marty Makary, MD, a surgeon and public policy researcher at the Johns Hopkins School of Medicine, wrote in a commentary in The Wall Street Journal.Â
Other doctors strongly disagree, including Alba Azola, MD, co-director of the Johns Hopkins Post-Acute COVID-19 Team and an expert in the stigma surrounding long COVID.Â
âPutting that spin on things, itâs just hurting people,â she says.Â
One example is people who cannot return to work.
“A lot of their family members tell me that they’re being lazy,â Azola says. âThat’s part of the public stigma, that these are people just trying to get out of work.”Â
Some experts say the U.K. study represents a landmark.Â
âWhen you have data like this on long COVID stigma, it becomes more difficult to deny its existence or address it,â says Naomi Torres-Mackie, PhD, a clinical psychologist at Lenox Hill Hospital in New York City. She also is head of research at the New York-based Mental Health Coalition, a group of experts working to end the stigma surrounding mental health.
She recalls her first patient with long COVID.
âShe experienced the discomfort and pain itself, and then she had this crushing feeling that it wasnât valid, or real. She felt very alone in it,â Torres-Mackie says.Â
Another one of her patients is working at her job from home but facing doubt about her condition from her employers.
âEvery month, her medical doctor has to produce a letter confirming her medical condition,â Torres-Mackie says.
Taking part in the British stigma survey were 1,166 people, including 966 residents of the United Kingdom, with the average age of 48. Nearly 85% were female, and more than three-quarters were educated at the university level or higher.
Half of them said they had a clinical diagnosis of long COVID.
More than 60% of them said that at least some of the time, they were cautious about who they talked to about their condition. And fully 34% of those who did disclose their diagnosis said that they regretted having done so.
Thatâs a difficult experience for those with long COVID, says Leonard Jason, PhD, a professor of psychology at DePaul University in Chicago.
âItâs like theyâre traumatized by the initial experience of being sick, and retraumatized by the response of others to them,â he says.
Unexplained illnesses are not well-regarded by the general public, Jason says.Â
He gave the example of multiple sclerosis. Before the 1980s, those with MS were considered to have a psychological illness, he says. âThen, in the 1980s, there were biomarkers that said, âHereâs the evidence.ââ
The British study described three types of stigma stemming from the long COVID diagnosis of those questioned:
- Enacted stigma: People were directly treated unfairly because of their condition.
- Internalized stigma: People felt embarrassed by that condition.
- Anticipated stigma: People expected they would be treated poorly because of their diagnosis.
Azola calls the medical community a major problem when it comes to dealing with long COVID.
âWhat I see with my patients is medical trauma,â she says. They may have symptoms that send them to the emergency room, and then the tests come back negative. âInstead of tracking the patientsâ symptoms, patients get told, âEverything looks good, you can go home, this is a panic attack,ââ she says.
Some people go online to search for treatments, sometimes launching GoFundMe campaigns to raise money for unreliable treatments.Â
Long COVID patients may have gone through five to 10 doctors before they arrive for treatment with the Hopkins Post-Acute COVID-19 Team. The clinic began in April 2020 remotely and in August of that year in person.
Today, the clinic staff spends an hour with a first-time long COVID patient, hearing their stories and helping relieve anxiety, Azola says.Â
The phenomenon of long COVID is similar to what patients have had with chronic fatigue syndrome, lupus, or fibromyalgia, where people have symptoms that are hard to explain, says Jennifer Chevinsky, MD, deputy public health officer for Riverside County, CA.
âStigma within medicine or health care is nothing new,â she says.
In Chicago, Jason notes that the federal governmentâs decision to invest hundreds of millions of dollars in long COVID research âshows the government is helping destigmatize it.â
Pantelic says she and her colleagues are continuing their research.Â
âWe are interested in understanding the impacts of this stigma, and how to mitigate any adverse outcomes for patients and services,â she says.
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