A survey of people with long-COVID in the UK found that 95% had experienced stigma about the condition on several occasions.
The study, published 23 November 2022 in PLOS ONE, also looked at the types of stigma people experience and found that around 63% had overt experiences of being treated unfairly due to long-COVID, while 86% reported feelings of shame and worthlessness about the condition.
Around 90% of people said they felt they would be treated poorly or would be discriminated against because of the condition, and the findings highlight the widespread and multi-layered nature of the stigmas experienced by people living with long-Covid in the UK.
The research team, which included Dr Mark Boyes from Curtin University’s School of Population Health, aimed to develop, then validate a long-Covid Stigma Scale (LCSS) as well as quantify the burden of associated stigma.
In the UK alone, it is estimated that 1.8 million people currently have long-Covid for a duration of at least four weeks; out of those 791,000 have had it for at least one year; and 235,000 for at least two years.
Lead author, Professor Nisreen Alwan, from the School of Primary Care, Population Sciences and Medical Education at the University of Southampton, said that evidence from across health conditions and geographic contexts suggested that long-Covid stigma could be compromising patients’ health.
“Stigma–and the resultant fears of being ostracised or discredited–drives people underground and away from health services and contributes to psychological distress, thus compromising long-term physical health outcomes,” she said.
“The new LCSS is an important addition to the growing number of existing scales for measuring stigma among people with acute COVID infection or at risk of such infection.
“The stigma associated with long-Covid is unique, requiring its own measurement tool; unlike acute COVID, long-Covid is a chronic, less well understood condition, often psychologised, and has serious implications for people’s long-term health and productivity.”
The new scale captures three key domains—enacted, internalised, and anticipated stigma – and demonstrated good psychometric properties within the overall sample, and sub-samples of those with and without long-Covid diagnoses.
“Enacted stigma refers to direct overt experiences of discrimination, whereby individuals are treated unfairly due to their health condition,” Professor Alwan explained.
“Internalised stigma occurs when people adopt negative associations with a health condition and accept them to be true and applicable to themselves – characterised by feelings of shame and worthlessness – [and] anticipated stigma is the expectation of bias or poor treatment by others.
“These mechanisms can occur independently from each other–for example, a person may anticipate stigma, decide against disclosing their health condition or seeking treatment and therefore avoid enacted stigma. Nonetheless, all three stigma mechanisms may undermine people’s emotional wellbeing, health seeking behaviours, and physical and mental health outcomes.”
Anticipated and internalised stigma were more frequently experienced than enacted stigma and participants who reported having a clinical diagnosis of long-Covid had higher stigma prevalence than those without.
“The reason is not clear. It may be that this group were exposed to more stereotyping or dismissal of their experience during their journey to obtaining a clinical diagnosis compared to those with no clinical diagnosis, who perhaps had less interaction with services and others about their long-Covid,” Professor Alwan said.
“It may be that their long-Covid is more severe in nature making it more visible to others and/or more impactful in limiting everyday activities.”