An estimated 2.1 million people are living with long COVID in the UK alone. We recently asked 888 people in the UK with long COVID about their experiences of stigma, and 95% of them said they had experienced stigma related to their condition.
Long COVID is characterised by prolonged symptoms following a COVID infection. Symptoms can include fatigue, body aches and pains, breathing difficulties, rashes and a range of other respiratory, heart, neurological and digestive symptoms. The condition can hinder people’s ability to work, learn, care for their children and enjoy life. Treatment options are limited.
On top of the physical symptoms, people living with long COVID may have to contend with discrimination and prejudice within their communities, workplaces and even health services. Long COVID is a relatively new medical condition, and has been subject to lots of misinformation and minimisation of its legitimacy as a physical illness.
To date, there have been no estimates as to how common stigma around long COVID is, which has limited our ability to tackle the problem. Being aware of numerous anecdotes of the discrimination long COVID patients face, we decided to look into the extent of this problem. To do this, we designed a questionnaire together with people who had lived experience of the illness.
The questions aimed to estimate how commonly people with long COVID experience stigma across three domains. “Enacted stigma” means being treated unfairly due to their long COVID, “internalised stigma” is where people feel embarrassed or ashamed of their illness, and “anticipated stigma” is a person’s expectation that they will be treated poorly because of their condition.
Stigma and secrecy around long COVID
Nearly two-thirds (63%) of respondents said they had experienced overt discrimination related to their illness. Examples of this enacted stigma include being treated with suspicion and disrespect, or friends ceasing contact due to their health condition.
In addition, 91% of those surveyed shared that they lived in fear of prejudice (anticipated stigma). For example, they worried people would not believe their illness was real, or that they were at risk of losing their jobs due to having long COVID.
Some 86% of respondents reported internalised stigma. For example, they felt that they were of less value than others, or felt embarrassment or shame related to their illness and its associated physical limitations.
The fact that overt discrimination was less common than perceived prejudice and internalised shame shouldn’t be seen as a positive. It confirms what we know from research on other stigmatised conditions such as HIV.
People who are aware of the prejudice associated with a disease are likely to internalise shame and might try to protect themselves from discrimination by concealing their illness. This may make them less likely to face overt discrimination, but can have detrimental effects on their mental health, relationships and access to services.
Indeed, we found that experiencing stigma is linked to being careful about who people disclose their illness to. And about one-third of respondents said they regretted having told people 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 not formally diagnosed. We are unsure why this is. One possible explanation is that those with a formal diagnosis might be less likely to keep their symptoms a secret and more likely to engage with health services.
The stigma questions were part of a follow-up survey of respondents we originally recruited via social media. We recruited participants in this way to ensure we could capture people who identify as living with long COVID, irrespective of whether they had a formal clinical diagnosis (roughly half did).
Unfortunately, this means that our sample lacked diversity and, in particular, representation from more marginalised groups of people with long COVID, such as those with limited access to technology and social media.
The majority of people in our study were university-educated white women from England, and this may have resulted in an under- or over-estimation of long COVID stigma. So we cannot know for sure whether the prevalence of stigma found here will be the same for other groups of people with long COVID.
How to help
More research is needed to better understand how we can address the stigma surrounding long COVID.
If you know somebody with this condition, it can be difficult to know what to say, particularly in light of any misinformation that you may have been exposed to. Here are some supportive, non-stigmatising things you can say when someone tells you they have long COVID.
“Thank you so much for sharing your long COVID struggle with me.”
“I am so sorry. Is there anything that helps manage your symptoms?” It’s a good idea to list symptoms they shared with you to show you have heard and believe them.
“I realise I know very little about long COVID. I will start reading up on it more so that I can support you as best I can.”
“I am here for you. Please tell me if I can help in any practical way.” Long COVID symptoms might make daily chores and tasks difficult, so let them know what you might be able to help with, such as a cooked meal, childcare or school runs.
Marija Pantelic receives research funding from the NIHR for 'STIMULATE ICP: Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways' and an Individual Development Award from the NIHR ARC Kent Surrey and Sussex.
Nisreen Alwan receives research funding from the NIHR for 'STIMULATE ICP: Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways' and 'Hearing from the unheard: impact of long-COVID in minority ethnic groups in the UK (Hi-COVE)' studies.
Nida Ziauddeen does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.