'The misinformation, the stereotyping, the labelling just perpetuate stigmatization, so we need to challenge that'
People suffering from long COVID are not just having a hard time with their health – they’re in bad shape in employment and life overall, finds a new study.
“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 at the University of Alberta.
“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.”
Given the uncertain nature of COVID, HR must come up with ways to mitigate the impact and help the affected employees cope, one expert previously noted.
“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 Damant, who hopes that people will become more empathetic and open-minded 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,” he says. “The misinformation, the stereotyping, the labelling, just perpetuate stigmatization, so we need to challenge that.”
At least 65 million individuals worldwide are estimated to have long COVID, with cases increasing daily, according to a separate study published on the Nature Reviews Microbiology website.
In Canada, about 1.4 million Canadians experienced symptoms of COVID-19 three months after they were infected, Statistics Canada reported in October 2022.
Questionnaires provide insights
The researchers worked with patients referred to the Post COVID-19 Clinic in Edmonton between May 2021 and May 2022 who met inclusion criteria and were invited to complete online questionnaires, including a Post COVID-19 Condition Stigma Questionnaire (PCCSQ).
Study participants reported 54 distinct symptoms, with fatigue, drowsiness, shortness of breath, pain, anxiety, and depression being most frequent. Similarly, “reduced functional status” and increased frailty “were significantly associated with increased stigma scores,” says the study “Reliability and validity of the post COVID-19 condition stigma questionnaire: A prospective cohort study” in The Lancet.
“PCC-related stigma appears to be a pervasive but variable phenomenon. A range of stigma scores were found in all demographic categories. [The] highest risk occurred among individuals identifying as women, individuals of white ethnicity, and those with limited educational opportunity.”
The analysis also demonstrated a strong association between PCC-related stigma and decreased quality of life, they say.
“Similarly, high levels of stigma among study participants were associated with loss of employment due to disability. While overwhelming symptoms and loss of function could make return to work difficult or impossible for many PCC sufferers, it is compelling to speculate about the role that co-workers, employers, institutions, the health system, and government could be playing through behaviours and policies.”