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January 13, 2023 – People with long COVID may experience dizziness, headaches, sleep issues, slow thinking, and many other issues. But they may also face another problem: stigma.
According to a new report from researchers in the UK, most people who have had COVID for a long time are stigmatized because of their condition. In short: relatives and friends may not believe that they are really sick.
The UK team found that more than three-quarters of the people studied had often or always been stigmatised.
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.
These findings surprised the study’s lead researcher, Marija PantelicPhD, Lecturer in Public Health at Brighton and Sussex Medical School.
“After years of working on HIV stigma, I was shocked at how many people turned a blind eye and ignored the struggles faced by people with long-term COVID,” says Pantelic. “It was also clear to me from the start that this stigma is detrimental not only to the dignity of people, but also to public health.”
Even some doctors say the growing focus on long COVID is overkill.
“It is often normal to feel mild fatigue or weakness for weeks after being sick and inactive and not eating well. To call these long cases COVID is the medicalization of modern life,” Marty Makary, MD, surgeon and public policy researcher at Johns Hopkins School of Medicine, written in a comment by The the wall street journal.
Other doctors strongly disagree, including Alba Azola, MD, co-director of the Johns Hopkins Post-Acute COVID-19 team and an expert on the stigma surrounding long COVID.
“Turning things that way only hurts people,” she said.
An example is people who cannot return to work.
“A lot of their family members tell me they’re lazy,” Azola says. “It’s part of the public stigma, that these are people who are just trying to get out of work.”
Some experts say the UK study represents a landmark.
“When you have data like this on the long-standing COVID stigma, it becomes harder to deny its existence or address it,” says Naomi Torres-Mackie, PhD, clinical psychologist at Lenox Hill Hospital in New York. . She is also Head of Research at New York University Mental Health Coalitiona group of experts working to end the stigma surrounding mental health.
She remembers her first patient with long COVID.
“She felt the discomfort and the pain herself, and then she had this overwhelming feeling that it wasn’t valid or real. She felt very alone there,” says Torres-Mackie.
Another of his patients works at her job from home but faces doubts about her condition from her employers.
“Every month, his doctor must produce a letter confirming his state of health,” explains Torres-Mackie.
1,166 people, including 966 UK residents, with an average age of 48, took part in the UK stigma survey. Nearly 85% were women and more than three-quarters had university or higher education.
Half of them reported having 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 told about their condition. And no less than 34% of those who disclosed their diagnosis said they regretted doing so.
It’s a difficult experience for those with long COVID, says Leonard Jason, PhD, 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 the reaction of others to them,” he says.
Unexplained illnesses are not well regarded by the general public, Jason says.
He gave the example of multiple sclerosis. Before the 1980s, people with MS were considered to have a psychological illness, he says. “Then in the 1980s there were biomarkers that said, ‘Here’s the evidence.'”
The UK study described three types of stigma stemming from respondents’ long COVID diagnosis:
- Acted stigma: People were directly treated unfairly because of their condition.
- Internalized stigma: People felt embarrassed by this condition.
- Anticipatory stigma: People expected to be treated badly because of their diagnosis.
Azola calls the medical community a major problem when it comes to treating long COVIDs.
“What I see with my patients is medical trauma,” she says. They may have symptoms that send them to the emergency room, and then the tests come back negative. “Instead of tracking patients’ symptoms, they are told, ‘It’s fine, you can go home, it’s a panic attack,'” she says.
Some people go online to seek treatments, sometimes launching GoFundMe campaigns to raise money for unreliable treatments.
Long COVID patients may have seen five to 10 doctors before arriving for treatment with the Hopkins Post-Acute COVID-19 team. The clinic started in April 2020 remotely and in August of the same year in person.
Today, clinic staff are spending an hour with a first-time COVID patient, listening to their stories and helping relieve anxiety, Azola says.
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 of the Riverside County, California.
“Stigma in medicine or health care is nothing new,” she says.
In Chicago, Jason notes that the federal government’s decision to invest hundreds of millions of dollars in extensive research into COVID “shows that the government is helping to de-stigmatize it.”
Pantelic says she and her colleagues are continuing their research.
“We want to understand the impacts of this stigma and how to mitigate adverse effects for patients and services,” she says.
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Sources 2/ https://www.webmd.com/covid/news/20230113/stigma-comes-with-long-covid-diagnosis The mention sources can contact us to remove/changing this article |
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