People experiencing long COVID often experience job or relationship repercussions due to their condition, and many feel a sense of shame, according to new survey findings published in PLOS One.
The numbers of people experiencing long-term COVID complications is high and growing as high infection rates persist. For example, the United Kingdom’s Office for National Statistics estimated that 2.3 million residents are living with long COVID.
Those experiencing long COVID have anecdotally reported stigma due to their conditions, but until now, little was known about how common it is.
High levels of stigma experiences and perceptions
For the study, UK researchers surveyed participants who were part of an earlier online long-COVID survey. In the November 2021 follow-up, 966 people responded to 13 questions developed to tease out three types of stigma. They include enacted stigma, in which people were treated unfairly because of their condition. The team also examined internalized, such as feeling ashamed or embarrassed, and anticipated stigma.
Overall, 95% of respondents experienced at least one type of stigma “sometimes,” with 76% experiencing it “often” or “always.”
When researchers drilled down into the different types of stigma, they found that nearly two thirds (63%) had experienced stigma, such as people they care about stopping contact. Meanwhile, 91% said they expected to experience stigma, such as assuming that others don’t consider long COVID a real illness. And 86% said they felt a profound sense of shame, meaning they were embarrassed and felt very different from people who don’t have long COVID.
Marija Pantelic, MSc, DPhil, a public health lecturer at Brighton and Sussex Medical School, led the development of the stigma questions, which were based on input from people in a long-COVID support group. In a news release, she said the research team was shocked at how prevalent the stigma 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.”
Stigma more common with clinical diagnosis
The group also found that people with a clinical diagnosis of long COVID were more likely to report stigma than peers who didn’t have a formal diagnosis. Nisreen Alwan, MBChB, PhD, professor of public health at the University of Southampton and study coauthor, said it’s not clear why. “Perhaps because they are more likely to share their health status with others or perhaps because they have engaged more with health services.”
Pantelic said stigma is known to come with dire health consequences for other long-term health conditions, such as asthma, depression, and HIV. “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.”