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.