An estimated 2.1 million people are living with Long Covid in the UK alone. The Conversation 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.
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, The Conversation decided to look into the extent of this problem and 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.