Marija Pantelic and Nisreen Alwan: The stigma is real for people living with long covid 

Long covid stigma will have long lasting detrimental outcomes for patients, services, and society as a whole

Testimonies from people living with long covid illustrate profound stigmatisation. Many of them have been disbelieved and their ill health was not recognised for months. Stigma drives people underground and away from health services, contributes to psychological distress and mental illness, and by doing so compromises long term physical health outcomes. Non-engagement with health services and ill health are further stigmatized, perpetuating a vicious cycle of further stigma and sickness. Research on long covid stigma is still lacking, but emerging testimonies point to two important facets: institutional discrimination and internalised stigma. 

Institutional discrimination is defined as the collective failure of a system to provide an appropriate and professional service to a group of people because of their identity or health condition. Institutional discrimination is not always expressed through deliberate actions of individuals. Rather, it can occur due to systemic flaws that allow for—and at times perpetuate—both conscious and unconscious discrimination. Unconscious discrimination may occur through “unwitting prejudice, ignorance and thoughtlessness” among service providers. 

There are multiple and mutually reinforcing forms of institutional discrimination faced by people living with long covid who frequently report that health services are difficult to navigate and do not respond to their needs. Testimonial injustice is a pervasive theme, whereby the concerns and symptoms of people living with long covid are commonly dismissed by service providers. This—together with insufficiently specific guidelines on long covid—have often resulted in a lack of diagnosis. Without a diagnosis, people struggle to qualify for adequate sick leave and financial support. Both the dismissal and the penalty of not being recognised are exacerbated by compounded stigmas, such as racism, sexism, and classism. 

Long covid discrimination is exacerbated by structural inequities that existed prior to this pandemic. Minoritised populations make up a disproportionately large share of key workers. This includes health and social care, food supply, and utility workers, many of whom have casual contracts and are not eligible for support to isolate or paid sick leave. Like covid-19, long covid is likely to disproportionately affect key workers, but it is not yet recognised as an occupational illness. This has led to many key workers, including doctors and nurses, losing jobs due to persisting long covid symptoms, without being entitled to Industrial Injuries Disablement Benefit. Many key workers understandably feel frustration that they have put themselves in harm’s way to serve during the pandemic, without having adequate financial support to help them live with the long term consequences of their illness. 

Discriminatory experiences can also lead to internalised stigma, which occurs when people with a health condition internalise harmful public perceptions and accept them as applicable to themselves. Internalised stigma is characterised by feelings of guilt, shame, worthlessness, and in some cases suicidality. A study with doctors with long covid has highlighted that the inability to work and job loss have led to profound losses of personal and professional identities. This was accompanied by strong feelings of guilt for leaving colleagues with increased workloads and a sense of personal failure for not contributing to the “fight against covid.” 

People with a stigmatised condition can also internalise stigma without directly experiencing discrimination. For example, people might develop perceptions about a disease prior to their own symptoms developing. In such cases, anticipation of stigma can make them reluctant to engage with health services and seek a diagnosis. This is one of the reasons why we continue to encounter barriers to HIV testing, four decades into the HIV pandemic.

Both discrimination and internalised stigma have numerous toxic, long term effects. As evidenced in studies with other health conditions, stigma compromises people’s quality of life; drives people away from health and social services for fear of being labelled or judged; deprives people of economic and social resources; and fuels physical and mental illness. Institutional discrimination and internalised stigma are complex phenomena that persist across communicable and non-communicable disease to reinforce the very inequities that contribute to illness. 

But we can learn from decades of research on the stigma of illness to act early through three actionable steps: 

  1. Truly listen with an open mind to those with lived experience—Stigma is not easily visible or fixable from the outsider perspective, particularly when a condition is concealable and poorly understood like myaglic encephalomyelitis/chronic fatigue syndrome, and long covid. Patient testimonies are therefore essential for attempting to understand their experiences of stigma and begin to design solutions. A first step for this is to believe patients about their symptoms and recognise the injustices they face.
  2. Provide space and resources for patient-led research and solutions—We need to meet the concrete demands of people living with long covid to be counted, and to have adequate, timely services. Collective action and leadership from pwLC can be a powerful way of countering the ostracism and loss of self-worth that stigma creates and thrives on. 
  3. Structural approaches are essential to tackling long covid stigma—Non-discriminatory diagnoses and social protection for people who are unable to return to work are paramount. As so much of the stigma related to long covid is manifested within the healthcare system, health system responses to long covid are needed to improve patient experiences and counter (unwitting) institutional discrimination. These interventions should include sensitisation training for healthcare providers, as well as long covid stigma reporting and accountability mechanisms. 

Long covid stigma will have long lasting detrimental outcomes for patients, services, and society as a whole. We must tackle it now. 

Marija Pantelic is a Lecturer in Public Health at the Brighton and Sussex Medical School, and Associate Member of Oxford University’s Department of Social Policy and Intervention. Twitter: @PantelichMarija

Competing interests: none declared.

Nisreen A Alwan is an associate professor in Public Health at the University of Southampton and an Honorary Consultant of Public Health at University Hospital Southampton NHS Foundation Trust. @Dr2NisreenAlwan 

Competing interests: None declared