In the United Kingdom, about 2.3 million people are living with long Covid – a chronic, often debilitating condition sometimes following acute SARS-CoV-2 infections. While many testimonies have illustrated the profound stigmas experienced by these people, until recently there has been no quantitative assessment of the burden.
Now, a team of researchers led by the University of Southampton and the Brighton and Sussex Medical School (BSMS) has surveyed 1,100 people with long Covid by asking them about their experiences of stigma in three areas: enacted stigma, with individuals being directly treated unfairly due to their health condition; internalized stigma, where people felt embarrassed or ashamed of their condition, and anticipated stigma, or individuals’ expectation that they will be treated poorly because of their condition.
“There have been countless anecdotal reports of the stigma, dismissal, and discrimination faced by people living with long Covid. This study was the first to empirically measure this stigma and estimate prevalence,” said study lead author Marija Pantelic, a lecturer in Public Health at Brighton and Sussex Medical School.
“We were shocked to see just how prevalent it is, but the findings also empower us to do something about it. With the stigma questionnaire we developed, we can measure changes over time and the effectiveness of urgently needed anti-stigma interventions.”
The analysis revealed that 95 percent of people “sometimes” experienced at least one form of stigma, and 76 percent experienced it “often” or “always.” Nearly two-thirds (63 percent) of the respondents reported experiences of stigma, such as being treated with less respect, or people they care about not contacting them anymore due to their condition, while 91 percent anticipated to experience stigma and discrimination. Moreover, 86 percent felt a deep sense of shame from having long Covid. Interestingly, the prevalence of experiencing stigma was higher in those clinically diagnosed with long Covid.
“We were surprised to find that people with a clinical diagnosis of long Covid were more likely to report stigma than people without a formal diagnosis,” said study co-author Nisreen Alwan, a professor of Public Health at Southampton. “We are not sure why this is – perhaps because they are more likely to share their health status with others or perhaps because they have engaged more with health services. More research is needed to unpack the potential mechanisms of how and where this stigma is manifested, and who is most likely to stigmatize and be stigmatized.”
The study is published in the journal PLoS ONE.
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