An estimated 2.1million people are living with long COVID in the UK alone. We recently asked 888 people in the UK to long COVID about their experiences of stigma, and 95% of them said they had experienced stigma related to their condition.
Long COVID is characterized by prolonged symptoms following a COVID infection. Symptoms can include fatigue, aches and pains, difficulty breathing, skin rashes, and a range of other respiratory, cardiac, neurological, and digestive symptoms.
The disease can interfere with people’s ability to work, learn, care for their children and enjoy life. Treatment options are limited.
In addition to physical symptoms, people living with long-term COVID may face discrimination and prejudice within their communities, workplaces, and even health services.
Long COVID is a relatively new medical condition, and has been the subject of much misinformation and downplaying of its legitimacy as a physical illness.
To date, there have been no estimates of the frequency of stigma around long COVID is, which limited our ability to solve the problem.
Knowing many anecdotes about the discrimination faced by long-time COVID patients, we decided to examine the extent of this problem.
To do this, we designed a questionnaire with people who had experienced the disease.
The questions aimed to estimate how often people with long-term COVID are stigmatized in three areas.
“Actual stigma” means being treated unfairly because of their long COVID, “internalized stigma” is when people feel embarrassed or ashamed of their illness, and “anticipated stigma” is someone’s expectation that she will be treated badly because of her condition.
Almost two-thirds (63%) of respondents said they had experienced overt discrimination related to their condition. Examples of this stigma being implemented include being treated with suspicion and disrespect, or friends stopping contact because of their medical condition.
In addition, 91% of respondents said they live in fear of prejudice (anticipatory stigma).
For example, they feared that people would not believe their illness was real or that they might lose their job because they had long COVID.
Some 86% of respondents reported internalized stigma. For example, they felt they were less valuable than others, or felt embarrassment or shame because of their illness and the physical limitations associated with it.
The fact that overt discrimination is less common than perceived bias and internalized shame should not be seen as positive. This confirms what we know from research on other stigmatized conditions such as HIV.
People aware of the stigma associated with a disease are likely to internalize shame and may try to protect themselves from discrimination by concealing their disease.
This can make them less likely to face overt discrimination, but can have adverse effects on their mental health, relationships and access to services.
Indeed, we found that stigma is linked to being careful about who people disclose their disease to. And around a third of those surveyed said they regretted talking about their illness.
We also found that people with a clinical diagnosis of long COVID were more likely to experience all types of stigma than those who had not been formally diagnosed. We don’t know why that is.
One possible explanation is that people with a formal diagnosis might be less likely to keep their symptoms a secret and more likely to seek health care.
The stigma questions were part of a follow-up survey of respondents we initially recruited through social media. We recruited participants in this way to ensure that we could capture people who identify as living with long COVID, whether or not they had a formal clinical diagnosis (about half did).
Unfortunately, this means our sample lacked diversity and, in particular, representation of more marginalized groups of people with long-term COVID, such as those with limited access to technology and social media.
The majority of people in our study were white women with a university education in England, which may have resulted in an underestimate or overestimate of long COVID stigma. We therefore cannot know for sure whether the prevalence of stigma found here will be the same for other groups of people with long-term COVID.
More research is needed to better understand how we can combat the stigma surrounding long COVID.
If you know someone with this condition, it can be difficult to know what to say, especially in light of any misinformation you may have been exposed to. Here are some supportive, non-stigmatizing things you can say when someone tells you they have long COVID.
“Thank you so much for sharing your long struggle with COVID with me.” “I’m sorry. Is there anything that helps 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 that you care about them. believe.
“I realize that I know very little about the long COVID. I’ll start reading more so I can support you as best I can. “I’m here for you. Please let me know if I can help you in any practical way.” The long symptoms of COVID can make everyday chores and chores difficult, so let them know what you might be able to help, such as a cooked meal, childcare or school errands.
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