Understanding Long Covid: The need to challenge stigma at its root
I’m a philosopher. For the last few years, I have been working on philosophical issues around Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. When the Covid-19 pandemic struck, I was unsurprised to see the emergence of the phenomena we are calling “Long Covid”.
Everybody recognises that finding solutions to Long Covid will require scientific ingenuity. What is less recognised, but equally true, is that finding solutions to Long Covid will also require that we do some philosophical work.
In the UK and across the world, Long Covid rates are high, and there are lots of questions being asked: What kind of illness is it? How do we define it? How do we treat it? We are far from being able to answer these questions fully. Doing so requires scrutinising and dismantling deeply entrenched, long-standing dynamics of stigmatisation against other illnesses.
The debate so far has shown resistance to accept parallels between Long Covid and other existing conditions, or more specifically, existing conditions which have historically been subject to stigma. Resisting the association of Long Covid with particular sets of stigmatised illnesses has at least two undesirable potential consequences.
One risks not only endorsing the stigma associated with the existing conditions, but one also creates high stakes whereby the emergence of scientific reasons to accept parallels between Long Covid and stigmatised conditions delegitimises the suffering of those with Long Covid.
So, what has been said so far?
Last winter, a blog was published by the British Medical Journal, promoting use of the term “Long Covid”. This blog was authored by medical professionals and other academics who have suffered long-lasting effects from SARS-Cov-2. The authors encourage medical professionals to continue to embrace the patient-made term “Long Covid” on the grounds that it is better able to navigate socio-political and clinical challenges than alternative labels. “Long Covid”, they argue, “side-steps” words “post, “chronic” and “syndrome” which delegitimise suffering as a consequence of being associated with stigmatised groups.
There’s something of an elephant in the room here. Who are the stigmatised groups in question? The obvious candidate is those who suffer from so-called contested illnesses. This term is often used as a catch-all to refer to illnesses for which there is poor biological-level understanding, such that whether they are legitimate illnesses of their own is contested by some.
Most obviously in the firing line here is Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), and so it will be my focus. CFS/ME has heterogeneous symptomatology, but is typically characterised by disabling fatigue, lasting six months or longer that is not eased with rest; post-exertional malaise (worsening of symptoms following exertion); sleep problems; pain; headaches; cognitive problems; flu-like symptoms; feeling dizzy, sick, or having heart palpitations. Other complex and poorly understood illnesses such as Post-Viral Fatigue Syndrome (PVFS), Fibromyalgia and Functional Neurological Disorders (FND) are also relevant. We might also include Medically Unexplained Symptoms (MUIs).
Almost everybody who is familiar with CFS/ME will know that it is a heavily stigmatised illness. An important aspect of this stigma is the lack of scientific consensus about it: its aetiology, its nosology, and the efficacy of its diagnosis and treatment. What causes it? What kind of specialist do we send patients to? How many distinct new or existing conditions are captured by the existing diagnostic label?
How can we prove that they’re really ill?
The lack of scientific knowledge about CFS/ME leads to stigmatisation by way of exploiting that uncertainty. The formula is the same for the other conditions.
Lack of reliable biological markers and diagnostic tests can be taken as evidence that the illness is somehow less “real”, with its place “in one’s head”. This can delay diagnosis, treatment, and lead to undermining interactions both in the clinical encounter and wider society.
Pejorative descriptions of ill-health predicaments as “all in one’s head” are pejorative as a result of their association with yet another set of stigmatised illnesses: psychiatric, or mental, illnesses. The stigmatisation of psychiatric illness has a long and complicated history. Here I will mention only a small aspect of it: available causal explanation.
With the aforementioned contested illnesses as a case in point, the perceived legitimacy of an illness can be affected by the specificity of the story that can be told about its aetiology. Telling such stories about psychiatric illnesses has historically been difficult, where diagnoses typically do not carry as much explanatory power as in more obviously bodily illness.
Continued difficulty pinning down clear aetiology at the biological level for psychiatric illness sustains, and partially contributes to, a long-standing attitude that those with psychiatric illnesses are suffering from something less real, less medically legitimate, than those with more obviously bodily diseases.
With varying levels of subtlety, psychiatric illnesses continue to be often described as predicaments “all in one’s head”, in contrast to “real” bodily disease. From one extreme to the other, psychiatric predicaments are then seen as reducible down to personality traits such as laziness and weakness of character, in stark contrast to bodily disease.
The association between CFS/ME and psychiatric illness is a highly controversial one. Lazily made assumptions that people with CFS/ME are “just” suffering from a psychiatric illness can cause great harm.
Indeed, some with CFS/ME have reported such assumptions to be detrimental to the standard of care they received, such that it motivates resistance to the inclusion of a psychiatric perspective in their care.
Despite rapidly emerging parallels, the motivations for resisting associations between Long Covid and conditions such as CFS/ME now become clearer. To resist terms like “post”, “chronic” and “syndrome” is, at its foundation, to resist the stigma associated with psychiatric illness.
It is imperative to tease apart two grounds for resisting the inclusion of a psychiatric perspective: social grounds (the avoidance of stigma), and medical grounds. So long as the powerful stigmatisation of psychiatric illnesses persists, the social grounds risk superseding medical grounds.
Where psychiatric illness is associated with laziness and weak character, how could it be anything but harmful when a medical professional suggests you might benefit from seeing a psychiatrist?
This is concerning, as ignoring medical grounds in favour exploring scientific hypotheses can obfuscate potentially illuminating lines of enquiry. Are there good scientific grounds for resisting the inclusion of a psychiatric perspective on the relevant conditions? It’s not entirely clear.
Though we must tread carefully here, the view that psychiatry might be relevant to these conditions (at least in some cases; recognising heterogeneity is important) does not appear scientifically misguided, as Professor Carmine Pariante has recently argued. Moreover, recent brilliant advances in branches of psychiatry such as immunopsychiatry challenge the distinction between psychiatric and somatic (or mental and bodily) illness that much of this problem survives on.
I am not claiming here that we are in a position to say that these conditions are psychiatric conditions, in poignant words, “whatever that means, though it is rarely something good”. Rather, it is true that we are not in a sufficiently strong epistemic position to rule out that psychiatric research and treatment can help improve the lives of patients. For that reason, we should remain open minded.
The task at hand, then, need not necessarily be to resist the association between Long Covid, CFS/ME, and psychiatric illness, but to challenge that which negatively affects the perceived legitimacy of the conditions in question.
How? By recognising and dismantling the stigmatisation of psychiatric illness. Human suffering should not be stigmatised, whether it is treated by a psychiatrist, neurologist, immunologist or an endocrinologist.
We should therefore embrace scientific research into Long Covid with an open mind.
We should also remain vigilant, on the look-out for deep-rooted stigma which risks stifling scientific progress and harming patients.
This is hard work, but it is crucial. It is vital for both social and scientific progress that we recognise and challenge these stigmatising dynamics. Then, and possibly only then, can we make good progress in both individual and collective understanding of all such implicated conditions. This way we can tackle Long Covid, without leaving others behind.