January 13, 2023: People with prolonged COVID may revel in dizziness, headaches, trouble sleeping, slowness of thinking, and many other problems. But they may also face a problem: stigma.
According to a new report from researchers in the UK, most people with long-term COVID are stigmatized because of their condition. In short, your family and friends may not actually be sick.
The UK team found that more than three-quarters of those studied had been stigmatised occasionally.
In fact, 95% of other people with long-term COVID have faced at least one type of stigma at least a few times, according to the study, published in November in the journal PLOS One.
According to these findings, the study’s principal investigator, Marija Pantelic, PhD, professor of public fitness at Brighton and Sussex Medical School.
“After years of dealing with HIV stigma, I was shocked to see how many other people turned a blind eye and ignored the struggles faced by other people with COVID in the long term,” Pantalic says. “It was also clear to me early on that this stigma is negative not only for the dignity of other people, but also for public health. “
Even some doctors say that the prolonged development of COVID is excessive.
“It’s general to feel mild fatigue or weakness for weeks after being in poor health, inactive and not eating well. Calling those cases prolonged COVID is the medicalization of life fashionable,” Marty Makary, MD, surgeon and public policy researcher at Johns Hopkins. School of Medicine, he wrote in a Wall Street Journal commentary.
Other doctors strongly disagree, Alba Azola, MD, co-leader of Johns Hopkins’ post-acute COVID-19 team and an expert on the stigma surrounding prolonged COVID.
“Turning things around, it hurts people,” she says.
One example is other people returning to work.
“Many members of his family circle tell me they are lazy,” says Azola. “It’s part of the public stigma, that those are other people just looking to get out of work. “
Some experts say the British represents a benchmark.
“When you have knowledge like this about long-standing COVID stigma, they are again denied their lifestyles or coped with,” says Naomi Torres-Mackie, PhD, a clinical psychologist at Lenox Hill Hospital in New York. Array is also director of research for the New York-based Mental Health Coalition, an organization of experts working to end the stigma surrounding intellectual health.
She remembers her first patient with a long COVID.
“She felt the discomfort and herself, and then she had the overwhelming feeling that it wasn’t valid or real. She felt very alone there,” Torres-Mackie says.
Another of his patients who works on his paintings from home faces doubts about his condition from his employers.
“Every month, you have to submit a letter confirming your condition,” Torres-Mackie says.
1166 people, totalling 966 UK residents, with an average age of 48, took part in the UK Stigma Survey. Nearly 85 percent were and more than three-quarters had a higher or higher education.
Half of them reported having a long-term diagnosis of COVID.
More than 60% of them said they were at least some of the time suspicious of who they were talking to about their condition. And as many as 34% of those who disclosed their diagnosis said they regretted doing so.
It’s a tricky treat for those with prolonged COVID, says Leonard Jason, PhD, a professor of psychology at DePaul University in Chicago.
“It’s as if they’re traumatized by the initial joy of being sick and re-traumatized by others’ reaction to them,” he says.
Unexplained ailments are well regarded by the general public, Jason says.
He gave the example of sclerosis. Before the 1980s, other people with MS were thought to have a mental illness, he says. “Then in the 1980s, there were biomarkers that said, ‘Here’s the evidence. ‘”
The UK described 3 types of stigma stemming from respondents’ prolonged COVID diagnosis:
Azola calls the main medical network when it comes to treating prolonged COVID.
“What I see with my patients is medical trauma,” she says. They may have symptoms that send them to the emergency room and then test negative. “Instead of tracking patients’ symptoms, they’re told, ‘Everything looks like passod, you can go home, it’s a panic attack,'” he says.
Some other people stop by in line to seek treatments, launching GoFundMe campaigns to raise money for unreliable treatments.
Patients with prolonged COVID would likely have consulted five to 10 physicians before arriving for treatment with Hopkins’ post-acute COVID-19 team. The clinic started in April 2020 remotely and in August of the same year in person.
Today, the clinic spends an hour with a first-time COVID patient, listening to their stories and helping ease anxiety, Azola says.
The phenomenon of prolonged COVID is similar to what patients with chronic fatigue syndrome, lupus or fibromyalgia have had, where other people have symptoms that are difficult to explain, says Jennifer Chevinsky, MD, public fitness assistant for Riverside County, California.
“Stigma or fitness care is nothing new,” she says.
In Chicago, Jason notes that the government’s resolve to invest millions of dollars in the long COVID “shows that the government is helping to destigmatize it. “
Pantelic says she and her colleagues are continuing their research.
“We need to look at the effects of this stigma and how to mitigate the adverse effects for patients and services,” she says.
SOURCES:
PLOS One: “Long Covid Stigma: Load Estimation and Scale Validation in a UK-Based Sample. “
Marija Pantelic, PhD, Professor of Public Health, Brighton and Sussex Medical School, UK.
University of Southampton: “Most other people with Long Covid face stigma and discrimination. “
The Wall Street Journal: “The Exaggeration of Long Covid. “
Alba Azola, MD, co-director, Johns Hopkins COVID-19 post-acute team.
Naomi Torres-Mackie, PhD, Clinical Psychologist, Lenox Hill Hospital, New York.
Leonard Jason, PhD, Professor of Psychology, DePaul University, Chicago.
Jennifer Chevinsky, MD, Assistant Public Health Officer, Riverside County, California.
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