In addition to lingering symptoms, job loss, reduced physical function and quality of life, some COVID-19 long-haulers experience high levels of stigma, new research from an Edmonton clinic shows.
Patients began telling specialists working in Edmonton’s Long COVID Clinic their run-ins with stigma as soon as the facility launched in June 2020. The specialists later created a survey to explore the issue of stigma further.
The survey was completed by 145 patients and cross-referenced with information from their medical records, including six-minute walking distance, clinical frailty score, number of other illnesses and number of hospital visits.
Stigma scores were higher in women, Caucasians and people with lower educational opportunities, the research found.
The overall average stigma score was 103 out of 200 or approximately 4/10, where 0/10 represents no stigma and 10/10 is severe stigma.
Patients with higher stigma scores also had higher likelihood of more severe symptoms, anxiety, depression, reduced self-esteem and thoughts of self-harm, and were more likely to be unemployed due to disability.
“People said they were not allowed to return to work, ostracized from friends and family, subjected to unnecessary and humiliating infection control measures, accused of being lazy or weak, or accused of faking symptoms,” said Ron Damant, professor in the Faculty of Medicine and Dentistry.
“People who are suffering from long COVID are not faking it, they’re not weak, they don’t need to be treated like they’ve got an infectious disease,” Damant said.
“The misinformation, the stereotyping, the labelling just perpetuate stigmatization, so we need to challenge that,” he said.
While Damant acknowledges the sample size for the study was relatively small, he says the results are significant because it is one of the first quantitative examinations of stigma in long COVID patients. He hopes to refine the questionnaire and test it in other countries.
“I’m hopeful that, through increased health literacy and awareness, people will become more empathetic and open-minded,” he said.
According to Statistics Canada, nearly 15 per cent of Canadians — roughly 1.4 million people so far — report long COVID symptoms, now called Post COVID-19 Condition by the World Health Organization.
Daisy Fung took part in the Alberta stigma study. Fung, a family medicine physician at the Kaye Edmonton Clinic and assistant clinical professor, caught COVID-19 in March 2020. She is still experiencing post-exertional fatigue and muscle pain. She’s been diagnosed with post-COVID myalgic encephalomyelitis.
Fung, a mother of four and community volunteer, had to cut back on her work hours, reduce teaching, drop volunteer activities and avoid physical activity that worsens her condition.
“I’ve had lots of comments asking: ‘Why do predominantly women get this? Or only ‘well-to-do’ women?’ which are very inaccurate statements,” Fung said.
“It felt accusatory, that it’s mental health or malingering or burnout, lots of things that are not true.”
Fung found the study results reassuring, proving that disease-related stigma is happening.
The experience has also offered her new perspective when working with her own patients.
“It’s been a struggle, a learning curve, that’s helped me start to advocate for other patients who may have chronic illness, including long COVID and especially myalgic encephalomyelitis, who have been ignored for decades, and I hope that they will benefit,” she said.
“Kindness can help mitigate the harm.”
The clinic and survey are supported by the University of Alberta and Alberta Health Services.