Most people with long COVID face stigma and discrimination

Credit: Ivan Aleksic/Unsplash.

An estimated 2.3 million people are living with long COVID in the UK according to the Office for National Statistics data, and numbers are not decreasing due to limited treatment options and continued high COVID infection rates.

In a study from the University of Southampton and elsewhere, scientists found most people living with long COVID experience some form of stigma directly related to their condition.

In the study, people who took part in the 2020 long COVID online survey were invited to complete a follow-up survey in November 2021.

More than 1100 people took part, including 966 people from the UK, and were asked about their experiences of stigma in three areas:

Enacted stigma, where individuals were directly treated unfairly due to their health condition; internalized stigma, where people felt embarrassed or ashamed of their health condition, and anticipated stigma, which is the individual’s expectation they will be treated poorly because of their condition.

Ninety-five percent of people experienced at least one type of stigma at least “sometimes,” and 76% experienced it “often” or “always,” according to the results.

In the study, nearly two-thirds (63%) of people reported experiences of stigma such as being treated with less respect or people they care about stopping contact with them due to their health condition.

About 91% expected to experience stigma and discrimination, for example, they thought many people did not consider long COVID to be a real illness or they anticipated judgment.

Eighty-six percent of respondents felt a profound sense of shame related to having long COVID—they were embarrassed by their illness and felt very different from people without long COVID.

About 61% of people said they were very careful who they tell about their condition, and about one-third (34%) of respondents regretted having told people about it.

Overall, the prevalence of experiencing stigma was higher in those who reported having a clinical diagnosis of Long COVID compared to those without or who were unsure (83% v 69%).

The team was surprised to find that people with a clinical diagnosis of long COVID were more likely to report stigma than people without a formal diagnosis.

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 team says the stigma attached to long COVID is harming people living with Long COVID and is likely to leave a devastating mark on our society and health service provision.

If you care about COVID, please read studies about how vitamin B may help fight COVID-19, and new therapy from bananas may help treat COVID-19.

For more information about COVID, please see recent studies about new evidence on rare blood clots after COVID-19 vaccination, and results showing scientists find inexpensive, readily available drugs that may treat COVID-19.

The study was conducted by Dr. Marija Pantelic et al and published in PLOS ONE.

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