People struggling with long COVID face increased stigma, new University of Alberta study shows

Edmonton physician Dr. Daisy Fung stopped playing hockey twice a week after developing long COVID. 

After first having COVID-19 in March of 2020, she developed myalgic encephalomyelitis, which is commonly known as chronic fatigue syndrome, and post-exertional malaise.

Her symptoms, which include severe fatigue and muscle aches, worsen about a day or two after intense physical or cognitive activity.

She has also given up playing badminton and tennis and reduced the number of hours she works so she can function as a doctor and a parent.

When Fung posted about her long COVID symptoms on social media, some people were supportive, but others, including fellow medical professionals, told her she was actually struggling with burnout or a mood disorder.

"It was very upsetting to hear that, to say the very least, from people who care for patients with chronic illness," she told CBC News on Monday.

Fung said she feels validated by the results of a new peer-reviewed study published by University of Alberta researchers in the Lancet's eClinicalMedicine. 

Dr. Ron Damant, the study's lead author and a physician and U of A professor in the department of medicine, developed a 40-question questionnaire to identify and measure the stigma associated with what the World Health Organization calls "post COVID-19 condition."

Nearly two-thirds of the 145 people who fit the study's criteria and completed all the components were women and the participants' ages ranged from 22 to 80.

The researchers determined that the questionnaire did help identify patients with increased stigma — and it also helped show how stigma was affecting people with long COVID.

"It was comforting, in a way, to know that I'm not alone," said Fung, who participated as a patient in the study.

The study found that long COVID patients with higher levels of symptoms were more likely to have higher stigma levels than people who were relatively symptom-free. 

It also found people who reported high levels of stigma had reduced quality of life. These respondents had reduced perception of social support and reported experiencing more loneliness.  

"This study and others that are being published from elsewhere in the world will help increase awareness that long COVID is associated with stigma and that stigma associated with long COVID or other conditions can negatively impact health," Damant said.

When he and his colleagues first conceived of their study, in 2020,  Damant said there was little published material about long COVID and stigma, but experts have increasingly been exploring the relationship between the two.

Researchers in the U.K. found that more than three-quarters of surveyed people with long COVID had experienced stigma either often or always. 

Their study, published in November in the journal PLOS One, also found that 95 per cent of respondents with long COVID had experienced some stigma.

Kelly Gebo, a professor of medicine and epidemiology at Johns Hopkins University, said many patients with long COVID are able to resume their normal activities with some adaptation, but some have expressed complaints about isolation and stigma. 

"There is a feeling of, 'why can't you just be normal, like everybody else is,'" she said.

Gebo said employers should accommodate these patients with sick leaves, offer flexible schedules and allow time for health-care appointments.

"And I think in general, we as a society need to give some people some grace," she said. 

Fung said she hopes the study helps people, and especially those in her profession, listen and validate their colleagues, friends and patients with long COVID.

"It's unfortunate that we need a study to show that there's stigmatization against patients with acute and long COVID, but now that we have it, hopefully people can take that first step at looking inwards and approaching this more with kindness," she said.