Researchers found an association between high levels of stigma, persistent symptoms, reduced physical function, and workplace disability.
High levels of stigma experienced by some carriers of long-haul COVID-19 are associated with more intense symptoms, reduced physical function and loss of work due to disability, according to recently published research from the Lancet medical journal.
Specialists working at Edmonton’s Long COVID Clinic began listening to patients’ stories of stigma as soon as the clinic opened in June 2020. They developed a questionnaire designed to quantify reported stigma and compared the results to other measures of health and well-being.
Prolonged COVID is characterized by non-infectious symptoms such as fatigue, cough, shortness of breath, brain fog, joint pain, headache, diarrhea or rash that persist for more than three months after an 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,” said Ron Damant, a professor at the University of Alberta.
“It’s a constellation of associations all pointing in the same direction: stigma among patients with prolonged COVID is real and has the potential to negatively impact patient outcomes.”
Fifteen percent have long-term symptoms of COVID
Statistics Canada reports that 1.4 million people have reported ongoing symptoms of COVID so far. They include stigma study participant Daisy Fung, a family medicine physician and assistant clinical professor.
Fung contracted acute COVID in March 2020 and still experiences extreme fatigue after exertion and muscle aches. She was diagnosed with post-COVID myalgic encephalomyelitis characterized by chronic fatigue. A mother of four and a community volunteer, Fung had to cut back on her work hours, reduce her teaching responsibilities, give up volunteer activities and avoid physical activity that aggravated her symptoms.
Fung has gone public with her experience of stigmatization—even from other medical professionals—on social and traditional media.
“I’ve had a lot of comments asking, ‘Why do mostly women get this?’ Or only ‘affluent’ women?” which are inaccurate statements,” Fung said. “I felt guilty that it was mental health or abuse or burnout; things that are not true.”
Learning from other diseases
Damant says stigma is a non-medical factor, like poverty, lack of educational opportunities or food insecurity, that can have a big impact on physical well-being. His team’s approach to measuring stigma is modeled on similar tools for HIV, AIDS, epilepsy and leprosy.
The Long COVID Stigma Survey was completed by 145 patients, and the results were matched with information from their medical records, such as six-minute walk distance, clinical frailty score, number of other illnesses and number of emergency room visits.
Patients who experienced stigma were found in all demographic categories, but mean scores were higher for women, Caucasians, and people with lower educational opportunities.
Patients with higher stigma scores were found to be more likely to have 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 by friends and family, subjected to unnecessary and humiliating infection control measures, accused of being lazy or weak, or accused of faking symptoms,” Damant said. .
The clinic and study are supported by the University of Alberta and Alberta Health Services. Although Damant acknowledges that the sample size for the study is relatively small, he says the results are significant because this is one of the first quantitative studies of stigma in patients with long-term COVID. He hopes to refine the questionnaire and test it in other countries.
Patients “don’t fake it”
Damant also hopes attitudes will change as more is understood about long-term COVID and the impact of stigma on patients. It prescribes a nonjudgmental hearing as the first step toward healing patients who experience stigma.
“People aren’t faking it, they’re not weak, they don’t need to be treated like they have an infectious disease,” Damant said. “The misinformation, the stereotyping, the labeling just perpetuates the stigma, so we have to stand up against that.”
Fung agrees, realizing that her experience with the stigma attached to the disease is not unique. Being a long-time COVID patient helped her build empathy and made her more aware of everyone’s inherent biases.
“It’s been a learning curve that’s helped me start advocating for other patients who may have chronic illnesses, including ongoing COVID and especially myalgic encephalomyelitis, that have been ignored for decades,” she said. “Kindness can help mitigate harm.”
Article courtesy of the University of Alberta Folio
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