In a recent UK-based study published in the journal PLOS One, researchers found that among people with long Covid, the prevalence of them facing stigma on a frequent basis was 95% and 76% for those who always experienced stigma. However, anticipating and internalizing stigma was more commonly reported than enacted stigma or overt experiences of discrimination.
Stigma is an insidious and vicarious process through which certain individuals or entire communities are ostracized and denied completed social acceptance. This could be due to disabilities/health conditions, their physical appearance, skin color, or behavioral patterns.
“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,” the researchers wrote in their study.
This is a matter of great concern for those who are living with long Covid as it is a multi-system condition that afflicts people after a coronavirus infection. Many people with long Covid experience chronic fatigue syndrome (CFS) — also known as ME (myalgic encephalomyelitis). It is a complex and longterm illness that gets triggered by an acute infection like Covid and can significantly impact a person’s day-to-day routines, including the ability to work and be productive.
A 2022 study conducted in the UK estimated that approximately 1.8 million people have long Covid for at least a month. Out of that, at least 791,000 had long Covid for a year and 235,000 people continued having long Covid for two years.
According to researchers, people with under-studied and “disputed” health conditions like long Covid can face stigma through three mechanisms: direct and overt experiences of discrimination, internalized stigma or people adopting negative beliefs and feeling ashamed about having a health condition, and anticipating others to treat them in a biased and dismissive manner.
As the research on long Covid is still in its early stages, Marija Pantelic from the University of Sussex, and colleagues investigated how prevalent it is for people with long Covid to experience various forms of stigma.
The researchers included 966 participants who were residing in the UK. Around 85% of them were women and the participants’ mean age was 48 years old. The participants completed an online survey with 13 questions based on CFS/ME and their responses were completely anonymous.
Around 61% of the participants said they were extremely careful about who they speak to about having long Covid and almost 34% of them said they sometimes regretted telling certain people about having long Covid and struggling with CFS/ME.
“Evidence from across health conditions and geographic contexts suggests Long Covid stigma could be hindering public health by compromising patients’ mental health and engagement with the health system,” the researchers wrote. “Developing evidence-based strategies to tackle Long Covid stigma requires a description of the problem, including prevalence estimates, and a validated scale that can capture changes in stigma over time.”