Long COVID Stirs Up Stigma and Discrimination Among People
The majority of people living with Long COVID experience some form of stigma directly related to their condition, according to a new study published in the journal PLOS ONE.
An estimated 2.3 million people are living with Long COVID in the UK, according to the Office for National Statistics data, and numbers are not decreasing due to limited treatment options and continued high COVID-19 infection rates.
Long COVID Stigma may Encourage People to Hide the Condition
Testimonies illustrate profound stigmas experienced by people living with Long COVID, but until now there has been no quantitative assessment of the burden.‘95% of people living with Long COVID have faced stigma directly, and 76% have experienced stigma indirectly related to their condition.’
In the study conducted by researchers at the University of Southampton and Brighton and Sussex Medical School and co-designed by people living with Long COVID (from the charity Long COVID Support), people who took part in the 2020 Long COVID online survey were invited to complete a follow-up survey in November 2021.
More than 1100 people took part, including 966 people from the UK, and were asked about their experiences of stigma in three areas: enacted stigma, where individuals were directly treated unfairly due to their health condition; internalized stigma, where people felt embarrassed or ashamed of their health condition; and anticipated stigma, which is the individual's expectation they will be treated poorly because of their condition.
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 its prevalence.
Researchers were shocked to see just how prevalent it is, but the findings also empower us to do something about it. With the stigma questionnaire developed, they can measure changes over time and the effectiveness of urgently needed anti-stigma interventions.
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In the study, nearly two-thirds (63%) of people reported experiences of stigma such as being treated with less respect or having people they care about stop contact with them due to their health condition, while 91% expected to experience stigma and discrimination; for example, they thought many people did not consider Long COVID to be a real illness or they anticipated judgment.Eighty-six percent of respondents felt a profound sense of shame related to having Long COVID; they were embarrassed about their illness and felt �very different from people without Long COVID.
In the study, 61% of people said they were very careful about who they told about their condition, and about one-third (34%) of respondents regretted having told people about it. Overall, the prevalence of experiencing stigma was higher in those who reported having a clinical diagnosis of Long COVID compared to those without or who were unsure (83% vs 69%).
Researchers were surprised to find that people with a clinical diagnosis of Long COVID were more likely to report stigma than people without a formal diagnosis. They are not sure why this is - perhaps because they are more likely to share their health status with others or perhaps because they have engaged more with health services.
More research is needed to unpack the potential mechanisms of how and where this stigma is manifested, and who is most likely to stigmatize and be stigmatized. 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. People with the condition must be believed and supported to help their chances of recovery. The stigma attached to Long COVID is harming people living with it and is likely to leave a devastating mark on our society and health service provision.
We know from decades of research on 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 forms of support, which over time has detrimental consequences on people's physical and mental health. Let us all extend our support to overcome the stigma.
Source: Eurekalert