Long Covid and ME/CFS: When the Doctor Does Not Believe You

One of the latest episodes of German comedian Jan Böhmermann's late night show Magazin Royal (ZDF) was devoted to Long Covid and ME/CFS. Under the hashtag #Frauenticket, the show sparked a heated discussion on X, in the course of which women have reported countless examples of medical gaslighting. Many posts/complaints were related to chronic illness, ME/CFS, Long Covid, Endometriosis, etc. This heated discussion shows the extent to which everyday health practices are influenced by stigmatising narratives and are subject to systemic and epistemic injustice.

If you're sick, it's your own fault

In our neoliberal world, illness has become a problem of the individual. In a world in which self-optimisation, effectiveness and productivity are valued as central to the regime of happiness, illness is something that must be eliminated and hidden. Something that an individual must overcome as quickly as possible in order to meet the demands of a society determined by the free market. Being ill is tantamount to inefficiency and social parasitism; it leads to monetary and market losses. Being ill means dodging social and economic responsibility. Being ill means being guilty: after all, the responsibility for prevention and protection against disease lies with the individual. In these contexts, getting well becomes a matter of personal accountability, regardless of whether and what resources and systemic solutions are available and accessible.

Not a 'real' illness

Ailments such as Long Covid and ME/CFS fall squarely into this narrative. These are long-term conditions with poorly understood mechanisms that cannot simply be treated with painkillers. They are multisystemic, affect various corporeal areas and have a variety of symptoms. This means that they can manifest differently in different people. Their organic/biological causes are not easy to pin down. This makes these ailments susceptible to psychologisation – a tendency to regard them as psychological or psychosomatic. In such cases, the burden of proof lies with the ill person. Since psychological disorders continue to be stigmatised in our society, Long Covid and ME/CFS are stigmatised as well. This double stigmatisation goes hand in hand with a third narrative – that of hysteria.

The invention of hysteria

Historically, women have never had it easy when it comes to medicine. For a long time, medicine was practised by men and for men. Treatments were developed based on male bodies, not on women’s. Only recently, gendered medicine has begun to study the differences in, for instance, women's reactions to particular drugs and their doses or explored differences in symptoms (e.g. heart attack). 

Narratives about women as sources and transmitters of diseases have been around for ages. At the same time, non-normative female behaviour has often been pathologised, as can be seen in the case of female hysteria. From the late nineteenth century until the 1960s, hysteria was an actual medical diagnosis. Any behaviour not following the norm was considered a symptom of hysteria. This narrative has firmly lodged itself in popular consciousness and surely influences the way we as society treat women and their ailments. 

The stories tweeted by women under the hashtag #Frauenticket ('Women’s Ticket') demonstrate this very well: Female patients are still not being taken seriously; their stories are not heard. But medical gaslighting does not only affect women. Individuals from other marginalised communities are subjected to medical gaslighting, too.

Dealing with Chronic Illnesses

But we as a society, as individuals, as doctors, researchers and as representatives of particular economic branches can help those affected and their families: On a large scale, the welfare and healthcare systems must be reformed to be able to carry the burden of chronic illness. More concretely, for instance, the duration of the sick leave must be rethought and application processes must be simplified. More funding must go into studying such conditions. Doctors must be further educated. The doctor/patient ratio must be improved. Doctors work under time pressure. They are accountable to health insurance companies for the therapies they prescribe, which limits their agency. Also, while some experts are in the know, more postgraduate courses must be available for everybody else so that they can learn about the mechanisms of these diseases and can correctly diagnose them.

Employers will have to rethink the way in which work is being done and consider how people with Long Covid and ME/CFS can be integrated more easily into everyday work. The same applies to schools and universities: We need enough offers for children and young adults, whose corporeal and cognitive capacities have dwindled. These are just some of the necessary transformations.

Looking fine is not the same as being fine

Illnesses are complex entities that need complex models of explanation. These must include biological, psychological and socio-cultural factors. Not every impairment is visible. A step towards a different approach to ailments such as Long Covid and ME/CFS would be to listen to the people and their stories, not to doubt them only because we do not understand. It is not easy to talk about one’s illness. In our culture, there are no suitable frameworks for expressing experiences of illness, especially if the ailment is chronic and multisystemic. But we can try to develop new narratives and (visual) languages. If we expect doctors to think critically, we should be prepared to do the same.

My job as a literary and cultural studies scholar is, among others, to teach my students to reflect on and question extant explanatory models and narratives, and to ask what power relations are intertwined with these.

As a society, we must foster a sense of solidarity: Neither Long Covid sufferers nor women's quotas pose a threat to our welfare state. Systemic injustice, on the other hand, does.