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Southampton, Nov. 24 (Dialogue) An estimated 2.1 million people are living with long-term COVID in the UK alone. We recently asked 888 people with long-term COVID in the UK about their experiences with stigma, and 95% of them said they had experienced stigma related to their condition.
Long COVID is characterized by prolonged symptoms after infection with COVID. Symptoms may include fatigue, body aches, difficulty breathing, rashes and a range of other respiratory, cardiac, neurological and digestive symptoms.
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This condition can hinder people’s ability to work, study, care for children, and enjoy life. Treatment options are limited.
In addition to physical symptoms, people with long-term COVID may have to deal with discrimination and prejudice in the community, in the workplace, and even in healthcare services.
Long COVID is a relatively new medical condition and has been subject to a great deal of misinformation that minimizes its legitimacy as a physical illness.
To date, there are no estimates of how widespread chronic COVID stigma is, limiting our ability to address this issue.
Aware of the numerous anecdotes of discrimination faced by long-term COVID patients, we decided to investigate the extent of the problem.
To this end, we designed a questionnaire with people who had experienced the disorder.
The questions were designed to estimate the prevalence of stigma experienced by people with long-standing COVID in three domains.
“Implemented stigma” is when people are treated unfairly due to a long-term infection with COVID-19. ill-treated.
Nearly two-thirds (63%) of respondents said they had experienced overt discrimination related to their disease. Examples of this stigma include being treated with suspicion and disrespect, or friends stopping contact due to a medical condition.
Additionally, 91% of respondents said they lived in fear of prejudice (the expected stigma).
For example, they worry that people won’t believe their illness is real, or that they’re at risk of losing their jobs due to prolonged COVID exposure.
Some 86 percent of respondents reported internalizing stigma. For example, they feel less valuable than other people, or feel embarrassed or ashamed about their illness and its associated physical limitations.
The fact that overt discrimination is less prevalent than perceived prejudice and internalized shame should not be viewed as a positive. It confirms what we know from research on other stigmatized diseases like HIV.
People who are aware of disease-related prejudice may internalize shame and may attempt to protect themselves from discrimination by hiding their disease. This may make them less likely to face overt discrimination, but can adversely affect their mental health, relationships and access to services.
In fact, we found that experiencing stigma was associated with being cautious about who people disclosed their illness to. About a third of respondents said they regretted telling people about their condition.
We also found that people with a clinical diagnosis of long-standing COVID were more likely to experience various types of stigma than those without a formal diagnosis. We’re not sure why this is. One possible explanation is that those who receive a formal diagnosis may be less likely to keep their symptoms a secret and more likely to participate in medical services.
The stigma question was part of a follow-up survey of respondents we initially recruited through social media. We recruited participants in this way to ensure that we were able to capture those who were identified as having prolonged COVID, regardless of whether they had a formal clinical diagnosis (approximately half).
Unfortunately, this meant that our sample lacked diversity and, in particular, under-represented marginalized populations from prolonged COVID, such as those with limited access to technology and social media.
The majority of people in our study were white, university-educated women from the UK, which may lead to underestimation or overestimation of long-term COVID stigma. Therefore, we cannot determine whether the prevalence of stigma found here is the same as in other chronic COVID populations.
More research is needed to better understand how we can address the stigma surrounding long-term COVID.
If you know someone with this disorder, it can be difficult knowing what to say, especially in light of any misinformation you may have been exposed to. When someone tells you they have long-term COVID, there are supportive, non-stigmatizing things you can say.
“Thank you so much for sharing your long struggle with COVID with me.”
“I’m sorry. Is there anything I can do to help manage your symptoms?” It’s a good idea to list the symptoms they’ve shared with you to show that you’ve heard them and believed them.
“I realize how little I know about long COVID. I’m going to start reading more about it to support you as much as I can.”
“I’m here for you. Let me know if I can help in any practical way.” Chronic COVID symptoms can make everyday chores and tasks difficult, so let them know how you can help, such as Cooking, childcare or school. (dialogue)
(This is an unedited and auto-generated story from a Syndicated News feed, the content body may not have been modified or edited by LatestLY staff)
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