A recent study has found that people with long Covid may experience a non-physical side-effect of the virus, apart from dizziness, headaches, sleep problems, sluggish thinking and other problems, and that is stigma.
The report from United Kingdom researchers has found that in many cases, relatives and friends may not believe people are truly sick, the study team finding that more than three-quarters of people studied had experienced stigma “often” or “always”.
In fact, reports Medscape, 95% of people with long Covid faced at least one type of stigma at least sometimes, according to the study, published in the journal PLOS One.
Those conclusions were surprising, said the study’s lead researcher, Marija Pantelic, PhD, a public health lecturer at Brighton and Sussex Medical School.
“After years of working on HIV-related stigma, I was shocked to see how many people were turning a blind eye to and dismissing the difficulties experienced by people with long Covid.
“It has also been clear from the start that this stigma is detrimental not just to people’s dignity, but also for public health.”
Even some doctors argue that the growing attention paid to long Covid is excessive.
“It’s often normal to experience mild fatigue or weaknesses for weeks after being sick and inactive and not eating well. Calling these cases long Covid is the medicalisation of modern life,” wrote Dr Marty Makary, a surgeon and public policy researcher at the Johns Hopkins School of Medicine, in a commentary in The Wall Street Journal.
Other doctors strongly disagree, including Dr Alba Azola, co-director of the Johns Hopkins Post-Acute Covid-19 team and an expert in the stigma surrounding long Covid.
“Putting that spin on things, it’s just hurting people,” she says. One example is people who cannot return to work.
“A lot of their relatives tell me they’re being lazy,” Azola said. “That’s part of the public stigma, that these are people just trying to get out of work.”
Some experts say the UK study represents a landmark.
“When you have data like these on long Covid stigma, it becomes more difficult to deny its existence,” says Naomi Torres-Mackie, PhD, a clinical psychologist at Lenox Hill Hospital in New York City.
She is also head of research at the New York-based Mental Health Coalition, a group of experts working to end the stigma surrounding mental health.
Taking part in the British stigma survey were 1 166 people, including 966 residents of the UK, average age 48. Nearly 85% were female, and more than three-quarters were educated at the university level or higher.
Half said they had a clinical diagnosis of long Covid.
More than 60% of them said at least some of the time, they were cautious about who they talked to about their condition. And fully 34% of those who did disclose their diagnosis said they regretted having done so.
The British study described three types of stigma stemming from the long Covid diagnosis of those questioned:
• Enacted stigma: People were directly treated unfairly because of their condition.
• Internalised stigma: People felt embarrassed by that condition.
• Anticipated stigma: People expected they would be treated poorly because of their diagnosis.
Azola calls the medical community a major problem in dealing with long Covid.
“What I see with my patients is medical trauma,” she says. They may have symptoms that send them to the emergency room, and then the tests come back negative. “Instead of tracking the patients’ symptoms, patients are told, ‘Everything looks good, you can go home, this is a panic attack’,” she says.
Long Covid patients may have gone through five to 10 doctors before they arrive for treatment with the Hopkins Post-Acute COVID-19 team. The clinic began in April 2020 remotely and in August that year in person.
Today, the clinic staff spends an hour with a first-time long Covid patient, hearing their stories and helping relieve anxiety, Azola says.
Pantelic says she and her colleagues are continuing their research. “We are interested in understanding the impacts of this stigma, and how to mitigate any adverse outcomes for patients and services,” she says.
Study details
Long Covid stigma: Estimating burden and validating scale in a UK-based sample
Marija Pantelic, Nida Ziauddeen, Mark Boyes, Margaret O’Hara, Claire Hastie, et al.
Published in PLOS One on 23 November 2022
Abstract
Background
Stigma can be experienced as perceived or actual disqualification from social and institutional acceptance on the basis of one or more physical, behavioural or other attributes deemed to be undesirable. Long Covid is a predominantly multisystem condition that occurs in people with a history of SARSCoV2 infection, often resulting in functional disability. This study aimed to develop and validate a Long Covid Stigma Scale (LCSS); and to quantify the burden of Long Covid stigma.
Methods
Data from the follow-up of a co-produced community-based Long Covid online survey using convenience non-probability sampling was used. Thirteen questions on stigma were designed to develop the LCSS capturing three domains–enacted (overt experiences of discrimination), internalised (internalising negative associations with Long Covid and accepting them as self-applicable) and anticipated (expectation of bias/poor treatment by others) stigma. Confirmatory factor analysis tested whether LCSS consisted of the three hypothesised domains. Model fit was assessed and prevalence was calculated.
Results
966 UK-based participants responded (888 for stigma questions), with mean age 48 years (SD: 10.7) and 85% female. Factor loadings for enacted stigma were 0.70–0.86, internalised 0.75–0.84, anticipated 0.58–0.87, and model fit was good. The prevalence of experiencing stigma at least ‘sometimes’ and ‘often/always’ was 95% and 76% respectively. Anticipated and internalised stigma were more frequently experienced than enacted stigma. Those who reported having a clinical diagnosis of Long Covid had higher stigma prevalence than those without.
Conclusion
This study establishes a scale to measure Long Covid stigma and highlights common experiences of stigma in people living with Long Covid.
Wall Street Journal article – The Exaggeration of Long Covid (Restricted access)
Medscape article – Add This to the List of Long COVID Symptoms: Stigma (Open access)
See more from MedicalBrief archives:
More than half of patients suffer long Covid symptoms – SA study
WHO estimates 17m long COVID cases in Europe and urges action
One in eight adults likely to develop long COVID symptoms – Dutch study
South African research sheds light on microclots’ role in long COVID