High levels of stigma experienced by some COVID long-haulers are associated with more intense symptoms, reduced physical function and loss of employment due to disability, according to newly published research from a Lancet medical journal.
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 observation in a more systematic way, they developed a questionnaire designed to quantify the stigma being reported. They compared scores on the stigma questionnaire to other measures of health and well-being.
Long COVID, now officially labelled Post COVID-19 Condition by the World Health Organization, is characterized by non-infectious symptoms such as fatigue, cough, shortness of breath, brain fog, joint pain, headaches, diarrhea or rashes that persist for longer than three months following acute infection with SARS-CoV-2.
“We found that people with higher levels of stigma had more symptoms, lower function, reduced quality of life, and a greater chance of unemployment due to disability,” says Ron Damant, professor in the Faculty of Medicine & Dentistry.
“That’s not cause and effect, but it’s certainly a constellation of associations that are all pointing in the same direction — stigma among long COVID patients is real, and this stigma has the potential to negatively impact patient outcomes.”
Fifteen per cent have long COVID symptoms
Statistics Canada reports that nearly fifteen per cent of Canadians, or 1.4 million people so far, report long COVID symptoms. They include stigma study participant Daisy Fung, family medicine physician and U of A 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.
Fung went public with her experiences of stigmatization — even from other medical professionals — in both social and traditional media.
“I’ve had lots of comments asking, ‘Why do predominantly women get this? Or only ‘well-to-do’ women?’ which are very inaccurate statements,” says Fung. “It felt accusatory, that it’s mental health or malingering or burnout, lots of things that are not true.”