EDMONTON — High levels of stigma experienced by some COVID long-haulers are associated with more intense symptoms, reduced physical function and quality of life, as well as loss of employment due to disability, according to newly published research.
Specialists working in Edmonton’s Long COVID Clinic began hearing patient stories suggestive of stigma as soon as the clinic became operational in June 2020. To explore this, they developed a long COVID stigma survey that was completed by 145 patients and cross-referenced with information from their medical records — such as six-minute walking distance, clinical frailty score, number of other illnesses and number of hospital visits.
Patients who experienced stigma were found in all demographic categories, but average scores were higher for women, Caucasians and people with lower educational opportunities.
Patients with higher stigma scores were found to have a 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,” says Ron Damant, professor in the Faculty of Medicine & Dentistry.
Statistics Canada reports that nearly fifteen per cent of Canadians, or 1.4 million people so far, report long COVID symptoms — now officially labelled Post COVID-19 Condition by the World Health Organization. They include stigma study participant Daisy Fung, family medicine physician at the Kaye Edmonton Clinic and assistant clinical professor.
Fung caught acute COVID in March 2020 and is still experiencing extreme post-exertional fatigue and muscle pain, and has been diagnosed with post-COVID myalgic encephalomyelitis, characterized by chronic fatigue. Also a mother of four and a community volunteer, Fung has had to cut back on her work hours, reduce teaching responsibilities, drop volunteer activities and avoid physical activity that worsens her symptoms.
Damant also hopes attitudes will change as more is understood about long COVID and the impact of stigma on patients.
“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 says. “The misinformation, the stereotyping, the labelling, just perpetuate stigmatization, so we need to challenge that,” he says.
The full story can be found here. To speak with Ron Damant or Daisy Fung please contact: Debra Clark
U of A communications associate
debra.clark@ualberta.ca