edmonton research measures 'insidious' impact of stigma for covid long-haulers
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dr. ron damant, a respirologist who helps treat patients who have long covid, at the kaye edmonton clinic on friday jan. 20, 2023.
greg southam
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posstmedia
dr. ron damant’s patients are frequently told by others that they must be faking their symptoms.
the respirologist treats long covid patients at the kaye edmonton clinic, seeing people who are months past an acute covid infection but still can’t shake persistent fatigue, pain, stomach problems, breathing problems — or a host of other possible issues.
the clinic started up in the summer of 2020, with doctors anticipating patients struggling with lung damage after getting sick and possibly being on a ventilator for long periods of time. but as thousands of patients have come through the doors with a range of issues, damant and other doctors started noticing one common thread: stigma.
“it wasn’t just the occasional person. it was pretty common,” he said.
“they’re afraid. patients have to be very careful about who they tell they have long covid for fear of being treated poorly.”
damant and other specialists at the clinic developed a questionnaire on long covid stigma, and analyzed 145 patient responses. the results, published in a lancet medical journal this month, offer a way to measure the stigma covid long-haulers face, and how it’s another factor hurting their mental and physical health.
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while a relatively small group of people was studied, damant said it shows a strong signal about how judgment from others is affecting long covid patients. the researchers found that the higher the stigma patients experienced, the lower their quality of life is.
“there’s a lot of people who think, ‘well, i had covid and i’m perfectly fine, so clearly you’re a weakling or you’re faking it. you just don’t want to go back to work,'” damant said.
“long covid is real. stigmatizing, stereotyping, labelling is only going to make the situation worse. i think we need to be aware and open-minded and compassionate.”
long covid, acknowledged as post-covid condition by the world health organization, is defined as continuing or developing symptoms three months after a covid infection, persisting without any other explanation. estimates of its prevalence vary, but statistics canada data indicates nearly 15 per cent of canadians adults who tested positive for covid or had a suspected infection reported prolonged symptoms at least three months later.
dr. daisy fung in edmonton on dec. 15, 2020. ian kucerak/postmedia
ian kucerak
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postmedia
dr. daisy fung got sick with covid in the early days of the pandemic’s arrival in alberta, at an edmonton curling bonspiel attended by doctors and health workers in march 2020. the event was held when fairly large gatherings were still allowed, and more stringent public-health restrictions had yet to take effect. but it became an early “superspreader” that has since been studied to learn more about transmission, with more than half the curlers catching covid at the tournament.
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fung, a family physician, had a high fever that lasted days but, as she recovered, she realized she wasn’t “back to normal” in her busy life working, being a parent and playing sports.
a hockey game or a long day at work could trigger exhaustion and muscle pain that made it impossible to function. nearly three years later, she’s had to cut back significantly on her clinic hours, and had to stop doing recreational activities she used to enjoy, since pushing herself too hard makes her symptoms worse.
as one of the participants in the study on stigma with long covid, she said the results validated much of what she’s been through.
“even as a health professional, i hear it from my own colleagues, that what i have is not long covid and it’s not real because there are no tests that we can show to prove it’s there,” she said.
“these are colleagues that would be treating not only long covid patients, but also other patients with chronic disease in their practice. and i wondered if they’re telling their fellow md this, what are they telling their patients and how are they caring for them?”
fung said patients with chronic illnesses like long covid have to advocate for themselves while health professionals and society catch up, but research into long covid stigma helps show the problem is there.
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“unfortunately that’s what we have to do with things like stigma — prove with that data that it’s real.”
damant added that there’s more work to do to help patients who are struggling.
“i think it would be wrong to conclude that because we’re kind of becoming used to the pandemic and covid and it’s being normalized, it means that the stigma is fading away. stigma is very insidious.”
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