January 13, 2023 – People with long COVID can experience dizziness, headaches, trouble sleeping, sluggish thinking and many other problems. But they can also face another problem – stigma.
Most people with long COVID are stigmatized because of their condition, according to a new report by UK researchers. In short, family and friends may not believe they are actually ill.
The UK team found that more than three quarters of the people surveyed had often or always experienced stigma.
In fact, according to the study, 95% of people with long COVID faced at least some type of stigma at least some of the time. Published in the magazine Nov Plus one.
These conclusions surprised the study’s lead investigator, Marija PantelicPhD, Lecturer in Public Health at Brighton and Sussex Medical School.
“After years of working on HIV-related stigma, I was shocked to see how many people turn a blind eye and ignore the difficulties of people with long-COVID,” says Pantelic. “Also, I knew from the start that this stigma is not only detrimental to people’s dignity, but also to public health.”
Even some doctors argue that the growing attention long given to COVID is overblown.
“It’s often normal to feel mild fatigue or weakness for weeks after being sick, inactive and not eating well. Long calling these cases COVID is the medicalization of modern life,” said Marty Makary, MD, a public policy surgeon and researcher at the Johns Hopkins School of Medicine. wrote in a comment in the Wall Street Journal.
Other physicians disagree, including Alba Azola, MD, co-director of the Johns Hopkins Post-Acute COVID-19 Team and expert on the stigma of long COVID.
“When you put that spin on things, it just hurts people,” she says.
An example is people who cannot return to work.
“A lot of their family members tell me they’re lazy,” says Azola. “It’s part of the public stigma that these people are just trying to get out of work.”
Some experts say the UK study marks a milestone.
“When you have data like this about a long-standing COVID stigma, it becomes harder to deny or address its existence,” says Dr. Naomi Torres-Mackie, clinical psychologist at Lenox Hill Hospital in New York City. She is also Research Director at the New York Institute Mental Health Coalitiona group of experts working to remove the stigma surrounding mental health.
She remembers her first patient with long COVID.
“She experienced the discomfort and the pain herself, and then she had this crushing feeling that it wasn’t valid or real. She felt very alone in it,” says Torres-Mackie.
Another of her patients works from home at her workplace, but is faced with doubts about her condition by her employers.
“Your doctor has to provide a letter every month confirming your medical condition,” says Torres-Mackie.
The UK Stigma Survey had 1,166 respondents, including 966 UK residents, with an average age of 48. Almost 85% were women and more than three quarters had a university degree or higher education.
Half of them reported having a clinical diagnosis of long COVID.
More than 60% of them said they were at least sometimes cautious about who they spoke to about their condition. And a whopping 34% of those who disclosed their diagnosis said they regretted doing so.
It’s a difficult experience for those with long COVID, says Dr. Leonard Jason, Professor of Psychology at DePaul University in Chicago.
“It’s like they’re traumatized by the initial experience of being sick and re-traumatized by how others react to them,” he says.
Unexplained diseases are not viewed well by the general public, says Jason.
He cited multiple sclerosis as an example. Before the 1980s, people with MS were considered mentally ill, he says. “Then in the 1980s, there were biomarkers that said, ‘Here’s the proof.'”
The UK study described three types of stigma arising from respondents’ long COVID diagnosis:
Azola calls the medical community a major problem in dealing with long COVID.
“What I see in my patients is medical trauma,” she says. They can have symptoms that they send to the emergency room and then the tests are negative. “Rather than tracking patients’ symptoms, patients are told, ‘Everything looks fine, you can go home, this is a panic attack,'” she says.
Some people go online to look for treatments, sometimes starting GoFundMe campaigns to raise money for unreliable treatments.
Long COVID patients may have gone through five to 10 doctors before arriving at the Hopkins Post-Acute COVID-19 Team for treatment. The clinic began remotely in April 2020 and in person in August of the same year.
Today, clinic staff spends an hour with a first-time long COVID patient, listening to their stories and helping ease anxiety, Azola says.
The phenomenon of long COVID is similar to what patients with chronic fatigue syndrome, lupus, or fibromyalgia have experienced, where people have symptoms that are difficult to explain, says Dr. Jennifer Chevinsky, Assistant Public Health Officer for Riverside County, CA.
“Stigma in medicine or healthcare is nothing new,” she says.
In Chicago, Jason notes that the federal government’s decision to invest hundreds of millions of dollars in long-running COVID research “shows the government is helping to destigmatize it.”
Pantelic says she and her colleagues are continuing their research.
“We are interested in understanding the impact of this stigma and mitigating any potential negative consequences for patients and services,” she says.