January 13, 2023 – People with a long-term COVID infection may experience dizziness, headaches, sleep problems, slow thinking, and many other problems. But they may also face another problem – stigma.
Most people with long-term COVID have found they face stigma due to their condition, according to a new report by U.K. researchers. In short: relatives and friends may not believe they are really sick.
The British team found that more than three-quarters of the subjects studied often or always experienced stigma.
In fact, according to the study, 95% of people with long-term COVID face at least one type of stigma at least sometimes, Published in the November issue of PLOS One.
These conclusions surprised the study’s lead investigator, maria pantridgePhD, Lecturer in Public Health, Brighton and Sussex Medical School.
“After years of working with HIV-related stigma, I was shocked to see how many people turned a blind eye and brushed aside the hardships experienced by long-term COVID patients,” Pantelic said. “It was clear to me from the beginning that this stigma Not only does it damage people’s dignity, but it also damages public health.”
Even some doctors think the growing focus on long COVID is overdone.
“It’s often normal to experience mild fatigue or weakness for weeks after being ill, not exercising, and eating poorly. To call these cases chronic COVID is the medicalization of modern life,” said Dr. According to physician and public policy researcher Marty Makary, MD, wrote in the comments This wall street journal.
Other doctors strongly disagreed, including Alba Azola, MD, co-director of Johns Hopkins University’s post-acute COVID-19 team and an expert on long-term COVID stigma.
“Put this spin on things and it just hurts people,” she said.
An example is people who are unable to return to work.
“A lot of their family members told me they were lazy,” Azola said. “It’s part of the public stigma that these people just want to lose their jobs.”
Some experts say the UK study represents a milestone.
“When you have data like this on long-term COVID stigma, it’s much harder to deny it exists or to address it,” said Dr. Naomi Torres-Mackie, a clinical psychologist at Lenox Hill Hospital in New York City. Head of Research in New York Mental Health Alliancea group of experts working to end the stigma surrounding mental health.
She recalls her first long COVID patient.
“She went through the discomfort and the pain herself, and then she had a broken feeling that it wasn’t real and it wasn’t real. She felt very alone in it,” Torres-Mackie said.
Another of her patients was working from home, but her employer was skeptical about her condition.
“Every month, her doctor had to produce a letter confirming her medical condition,” Torres-Mackie said.
A total of 1,166 people participated in the British stigma survey, including 966 British residents, with an average age of 48. Nearly 85 percent are women, and more than three-quarters have a college degree or higher.
Half of them said they had a clinical diagnosis of long-standing COVID.
More than 60 percent said they were wary of who they talked to about their condition, at least some of the time. Of those who did disclose their diagnosis, a full 34 percent said they regretted doing so.
For those who have had COVID for a long time, it has been a difficult experience, said Dr. Leonard Jason, a professor of psychology at DePaul University in Chicago.
“It’s like they’re traumatized by the initial experience of being sick and retraumatized by how other people react to them,” he said.
Unexplained illnesses are not taken seriously by the public, Jason said.
He gave the example of multiple sclerosis. Before the 1980s, people with MS were considered mentally ill, he said. “And then, in the 1980s, there were biomarkers that said, ‘Here’s the evidence.'”
The UK study described three types of stigma stemming from a long-standing COVID diagnosis of the person being questioned:
- enact shame: People are treated unfairly directly because of their condition.
- internalized shame: People are embarrassed by the situation.
- expected shame: People expect them to be treated badly because of their diagnosis.
In dealing with long COVID, Azola called the medical community a major concern.
“What I see in my patients is medical trauma,” she said. They may develop symptoms that send them to the emergency room and then test negative. “Instead of tracking a patient’s symptoms, tell the patient, ‘Everything looks fine, you can go home, this is a panic attack,'” she said.
Some go online to search for cures, sometimes launching GoFundMe campaigns to raise money for dodgy cures.
Long-COVID patients may have been seen by five to 10 physicians before reaching the Hopkins post-acute COVID-19 team for care. The clinic began remotely in April 2020 and in person in August of that year.
Today, clinic staff spend an hour meeting with a COVID-19 patient to hear their story and help with anxiety, Azola said.
Jennifer Chevinsky, M.D., deputy public health officer for Riverside County, California, said the phenomenon of long-term COVID is similar to that of people with chronic fatigue syndrome, lupus or fibromyalgia, and people’s symptoms are difficult to explain.
“Stigmatization in medicine or healthcare is nothing new,” she said.
In Chicago, Jason noted that the federal government’s decision to invest hundreds of millions of dollars in long-term COVID research “shows that the government is helping to remove stigma.”
Pantelic said she and her colleagues are continuing their research.
“We are interested in understanding the impact of this stigma, and how any adverse consequences for patients and services can be mitigated,” she said.