Ninety-five percent of people experienced at least one type of stigma at least ‘sometimes’, and 76% experienced it ‘often’ or ‘always’, according to the results.
Dr Marija Pantelic, a Lecturer in Public Health at BSMS who has also studied the stigma faced by people living with HIV, led the development of the stigma questions in the follow-up survey. She said: “There have been countless anecdotal reports of the stigma, dismissal and discrimination faced by people living with Long Covid. This study was the first to empirically measure this stigma and estimate prevalence. We were shocked to see just how prevalent it is, but the findings also empower us to do something about it. With the stigma questionnaire we developed, we can measure changes over time and the effectiveness of urgently needed anti-stigma interventions.”
She added: “The stigma attached to Long Covid is harming people living with the condition and is likely to leave a devastating mark on our society and health service provision. We know from decades of research with other long-term conditions such as asthma, depression and HIV that stigma has dire consequences for public health. Fear of stigma is also likely to drive people away from health services and other support, which over time has detrimental consequences on their physical and mental health.”
In the study, nearly two-thirds (63%) of people reported experiences of stigma such as being treated with less respect or people they cared about stopping contact with them because of their health condition, while 91% expected to experience stigma and discrimination, for example by thinking that people would not consider Long Covid to be a real illness or expecting others to judge them. In addition, 86% of respondents felt a profound sense of shame related to having Long Covid - they were embarrassed of their illness and felt ‘very different’ from people without Long Covid.
Claire Hastie from the charity Long Covid Support, which also worked on the study, said: “Sadly we see the results of stigma all too often among members of our support group. In addition to the significant health burden of Long Covid, the stigma and discrimination associated with the condition can lead to relationship breakdowns and problems at work. These cause immense additional distress, which itself can compromise healing. It is vital that people with the condition are believed and supported to help their chances of recovery.”