In a recent UK study published in the journal Plus one, researchers found that among people with long covid, the prevalence that they often face stigma was 95% and 76% among those who always faced stigma. However, anticipating and internalizing stigma was reported more frequently than prescribed stigma or overt experiences of discrimination.
Stigma is an insidious and vicarious process through which specific individuals or entire communities are ostracized and denied full social acceptance. This may be due to disabilities/health conditions, their physical appearance, skin color or behavioral patterns.
“Stigma — and the resulting fear of being ostracized or discredited — drives people underground and away from health services and contributes to psychological distress, thereby affecting long-term physical health outcomes,” the researchers write in their study.
This is of great concern to those living with Covid for a long time as it is a multisystem disease that affects people after contracting coronavirus. Many people with long Covid suffer from Chronic Fatigue Syndrome (CFS) – also known as ME (Myalgic Encephalomyelitis). It is a complex and long-term illness triggered by an acute infection such as Covid, which can significantly affect a person’s day-to-day life, including the ability to work and be productive.
A 2022 study conducted in the UK estimates around 1.8 million people have had Covid for at least a month. Of these, at least 791,000 had long covid for a year and 235,000 people had continued long covid for two years.
According to researchers, people with understudied and “controversial” 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 being ashamed of having a health condition and anticipating others, treating them with prejudice and dismissiveness.
With research on Long Covid still at an early stage, Marija Pantelic of the University of Sussex and colleagues looked at how often people with Long Covid experience different forms of stigma.
The researchers included 966 participants who lived in the UK. About 85% of them were women and the average age of the participants was 48 years. Participants completed a 13-question online survey about CFS/ME, and their responses were completely anonymous.
Around 61% of participants said they were extremely careful about who they spoke to about a long time with Covid, and almost 34% of them said they sometimes regretted telling certain people that they were have had Covid for a long time and struggled with CFS/ME.
“Evidence from all health conditions and geographic contexts suggests that Long Covid stigma could impede public health by compromising patient mental health and healthcare system engagement,” the researchers wrote. “Developing evidence-based strategies to address Long Covid stigma requires a description of the problem, including prevalence estimates, and a validated scale that can capture changes in stigma over time.”