January 13, 2023 – People with Long COVID can suffer from dizziness, headaches, sleep disturbances, sluggish pondering, and lots of other problems. But they may face one other problem – stigma.
According to a brand new report by British researchers, most individuals with Long COVID face stigma due to their condition. In short, relatives and friends may not imagine they’re really sick.
The British team found that greater than three-quarters of those studied had experienced stigma steadily or all the time.
In fact, 95% of individuals with Long COVID faced not less than one kind of stigma not less than sometimes, the study found. published in November in the magazine PLOS One.
These conclusions surprised the lead researcher of the study. Marija PantelicPhD, Lecturer in Public Health at Brighton and Sussex Medical School.
“After years of working on the issue of HIV-related stigma, I was shocked to see how many people ignored and ignored the difficulties faced by people with Long Covid,” says Pantelic. “It was also clear to me from the beginning that this stigma not only affects people's dignity, but also public health.”
Even some doctors imagine that the increasing attention being paid to Long-COVID-19 is exaggerated.
“It is often normal to experience mild fatigue or weakness for weeks after being sick, inactive, and eating poorly. Calling these cases long COVID is the medicalization of modern life,” said Dr. Marty Makary, a surgeon and policy researcher on the Johns Hopkins School of Medicine. wrote in a comment in The Wall Street Journal.
Other doctors disagree completely, including Dr. Alba Azola, co-director of the Johns Hopkins Post-Acute COVID-19 Team and an authority on the stigma of Long COVID.
“If you twist things like that, you only hurt people,” she says.
One example is individuals who cannot return to their working lives.
“Many of their family members tell me they are lazy,” says Azola. “That's part of the public stigma that these people are just trying to avoid work.”
Some experts describe the British study as a milestone.
“When you have such data on long-COVID stigma, it becomes harder to deny or address its existence,” says Dr. Naomi Torres-Mackie, a clinical psychologist at Lenox Hill Hospital in New York City. She can also be director of research on the New York-based Mental Health Coalitiona gaggle of experts committed to ending the stigma of mental illness.
She remembers her first patient with Long COVID.
“She experienced the discomfort and the pain herself and then she had this overwhelming feeling that it wasn't valid or real. She felt very alone in that,” says Torres-Mackie.
Another of her patients works from home, but her employer has doubts about her condition.
“Your doctor must issue a letter every month confirming your health status,” says Torres-Mackie.
The UK Stigma Survey involved 1,166 participants, including 966 UK residents with a median age of 48. Almost 85 per cent were female and greater than three quarters had a university degree or higher.
Half of them reported having a clinical diagnosis of Long COVID.
More than 60 percent of them said they were not less than sometimes cautious about who they talked to about their condition. And a full 34 percent of those that disclosed their diagnosis said they regretted doing so.
This is a difficult experience for individuals with Long COVID, says Dr. Leonard Jason, professor of psychology at DePaul University in Chicago.
“It’s as if they were traumatized by the initial experience of the illness and then re-traumatized by the reaction of others to them,” he says.
Unexplained illnesses usually are not popular with the general public, says Jason.
He gave the instance of multiple sclerosis. Before the Eighties, MS patients were considered mentally sick, he says. “Then, in the 1980s, there were biomarkers that said, 'Here's the evidence.'”
The British study describes three sorts of stigma resulting from respondents’ long COVID diagnosis:
- Stigmatization: People were treated unfairly directly due to their illness.
- Internalized stigma: People were ashamed of this example.
- Expected stigma: People expected to be treated poorly due to their diagnosis.
Azola sees a significant problem for the medical community in coping with Long COVID.
“I see medical trauma in my patients,” she says. They could have symptoms that bring them to the emergency room, after which tests come back negative. “Instead of tracking patients' symptoms, they're told, 'Everything looks fine, you can go home, this is a panic attack,'” she says.
Some people seek for treatment options online and sometimes start GoFundMe campaigns to boost money for unreliable treatments.
Long-COVID patients could have seen five to 10 physicians before arriving for care on the Hopkins Post-Acute COVID-19 Team. The clinic opened remotely in April 2020 and in person in August of the identical 12 months.
Today, clinic staff spend an hour with a patient who has long COVID for the primary time, listening to his story and helping him to cut back his fears, Azola says.
The phenomenon of Long COVID is analogous to that of patients with chronic fatigue syndrome, lupus or fibromyalgia, where victims have symptoms which can be difficult to elucidate, says Dr. Jennifer Chevinsky, deputy health officer for Riverside County, California.
“Stigmatization in medicine or healthcare is nothing new,” she says.
In Chicago, Jason points out that the federal government's decision to take a position tons of of thousands and thousands of dollars in long-COVID research “shows that the government is helping to remove the stigma around the disease.”
Pantelic says she and her colleagues are continuing their research.
“We want to understand the impact of this stigma and work to mitigate any negative consequences for patients and services,” she says.