people with long covid treated with less respect, feel shame and expect discrimination
researchers said the stigma around the virus adds more stress to people already dealing with the complications of an enduring illness, can threaten relationships and make it harder for a patient to heal.
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enacted stigma refers to unfair treatment directly related to long covid and internalized stigma encompasses the embarrassment or shame patients feel because of their illness. getty
a new study has found that 95 per cent of people living with long covid have experienced a form of stigma related to their elusive condition.
according to statistics canada, just under 15 per cent of canadians who contracted the virus between april 1 and august 15 of this year were still experiencing symptoms at least three months after being infected. the u.s. centers for disease control and prevention has published similar numbers, estimating that one in five adults can expect to experience lingering neurological symptoms from their encounter with the virus, including difficulty thinking or sleeping, lightheadedness, headaches, changes to smell or taste, depression and anxiety.
“there have been countless anecdotal reports of the stigma, dismissal and discrimination faced by people living with long covid,” said dr. marija pantelic, a lecturer in public health at brighton and sussex medical school who helped design the survey. “this study was the first to empirically measure this stigma and estimate prevalence. we were shocked to see just how prevalent it is, but the findings also empower us to do something about it.”
the research, which was published in the journal plos one, relied on the experiences of more than 1,100 people who had previously participated in a long covid study in 2020. this group was asked to complete another online survey, this one related to their encounters with three forms of stigma: enacted, internalized and anticipated. enacted stigma refers to unfair treatment directly related to long covid, internalized stigma encompasses the embarrassment or shame patients feel because of their illness and anticipated stigma is the expectation of poor treatment due to this condition.
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in addition to the 95 per cent of respondents who indicated they experienced at least one form of stigma “sometimes,” 76 per cent said they encountered it “often” or “always.” nearly two-thirds of respondents (63 per cent) felt they were being treated with less respect or that people they cared about had broken off contact because of their condition. the survey also found that 91 per cent of respondents expected to experience discrimination (by people who don’t believe long covid is real, for example) and 86 per cent felt shame about their status and “very different” from people who have not shared their experiences with the virus.
almost two-thirds of respondents said they were careful about who they told about their condition and one-third regretted having told people. interestingly, the prevalence of experiencing stigma was higher among those with a confirmed diagnosis of long covid than among those who only suspected they may have it (83 per cent vs. 69 per cent).
“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 nisreen alwan, co-lead author of the study and a professor of public health at the university of 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.”
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regardless of its origins, researchers said the stigma surrounding the virus only adds additional stress to people already dealing with the complications of an enduring illness. this lack of support can threaten personal and professional relationships and even compromise a patient’s ability to heal.
“the stigma is harming people living with long covid and is likely to leave a devastating mark on our society and health service provision,” pantelic said. “we know from decades of research with other long-term conditions — such as asthma, depression, and hiv — that stigma has dire consequences for public health.
“fear of stigma is also likely to drive people away from health services and other support, which over time has detrimental consequences on people’s physical and mental health.”
dave yasvinski is a writer with healthing.ca
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