Last week when we were having lunch at work, a powerful brain freeze swept through me and I had to refer to the word cutlery as ‘weapon for food’. A good chuckle brought by an episode of post-COVID brain fog. But there are times when it gets less amusing, when words, memory, and even thinking ebb away, leaving a dull mindscape shrouded in a blanket of vagueness and confusion. Indeed, I am constantly overwhelmed by a fear of permanent cognitive impairment.
Yet recurrent brain fog is merely one of the many lingering post-COVID complications. Even months after my initially mild COVID infection, I am still plagued by a confluence of debilitating ailments that undermine my very existence. My previously well-controlled muscular dystrophy came back with a vengeance. I continue to experience full-body joint pain, persistent low-grade fevers, shortness of breath, and erratic heart rate. My senses of smell and taste have derailed and I’ve lost the earthly craving for food.
And then there’s fatigue. Bone-deep fatigue gnawing and clawing at every nerve, every muscle, and every sense of being. Fatigue so recalcitrant that three cups of double-shot coffee aren’t enough to keep my eyes open in the early afternoon. Fatigue that turns simple daily routines like a shower into a Herculean task of trudging through thigh-deep snow.
A liminal space between the sick and the well
As a COVID long-hauler, I inhabit a liminal space of intractable uncertainty with regards to diagnosis, treatment, recovery, and prognosis.
In the foundational text Illness as Metaphor, Susan Sontag famously observed,
‘Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.’
COVID infections, however, have blurred the boundary between the two kingdoms of the well and the sick. A new biosocial identity has emerged from the collective experience of long COVID on a global scale, where we exist ‘betwixt and between’ yet belong to neither kingdom.
A tentative diagnosis of long COVID can only be made after extensive lab testing to rule out possibilities of other ‘real diseases’: micronutrients deficiency, thyroid abnormality, inflammation, EBV infection, anaemia, liver or kidney problems, and so on. Even after the blood test and scan results came back which showed most of the signs as normal and thus healthy, a definitive diagnosis still cannot be established due to the lack of quantifiable data under ‘impersonal’ scientific scrutiny.
While I am awaiting a long-overdue confirmation of eligibility for the local Post-COVID Recovery Clinic, I have lost my identity as a healthy person but have yet to receive the validation of a sick role, one that will allow me to shed some responsibilities free from moral implications. During this indefinite period of uncertainty, all aspects of my life have been turned topsy-turvy, as I am trying my best to fulfil the multiple social and productive roles that I no longer have enough spoons for, for fear of being accused as a ‘malingerer’.
Clinical encounters: a struggle for legitimacy
Similar to other ‘medically unexplained’ illnesses like fibromyalgia and Chronic Fatigue Syndrome (CFS), the diagnosis of long COVID is also an ambiguous process that lacks a linear, categorical progression to neatly fit into the scientific materialism of biomedicine. Therefore, my body has become a contested site of confusion and frustration for some healthcare professionals. Sometimes, given the absence of laboratory signs, the diagnosis of long COVID relies heavily on the patient’s self-reporting of symptoms, which is often conventionally construed as lacking credibility. Indeed, in the process of claiming a sick role, my subjective experience was dismissed as either non-existent or psychogenic.
Initially, a healthcare professional at a large local hospital refused to believe my complaints of post-COVID fatigue and mobility issues due to muscle deterioration and joint pain. They insisted ‘there is no such thing as long COVID’ and denied my request to undergo physical rehabilitation in their hospital. Instead, they kept on referring me to the respiratory department, because ‘COVID is a respiratory disease’. This interaction is a clear indication of a lopsided doctor-patient dynamic where the doctor has the ultimate authority to dictate how the patient experiences illness. In my case, experiential claims were not considered truths. The callous rejection of my suffering was rubbing salt into the wound.
On a different occasion, another healthcare professional advised me to ‘keep an open mind about antidepressants’ as they saw my physical pain as a result of pure psychological turmoil, despite my efforts to communicate the socioeconomic context of the post-COVID symptoms. Indeed, I caught COVID at the worst possible timing. I was near my thesis deadline and under immense stress to submit a complicated visa application with thousands of documents to collate. At the same time, without enough paid leave accrued, I was working full-time, often over-time, to keep my family financially afloat after they were hit by a catastrophic flood last year. Sufficient rest, as recommended as the best remedy by my care team, was a luxury that I simply could not afford, which likely contributed to the lingering symptoms.
But surely a silver bullet of antidepressants can magically make all of these go away.
This psychosomatic diagnosis can be traced back to the Cartesian mind-body dualism that characterises biomedicine and it is fraught with moral implications. When the physical suffering is attributed to the failure of the mind, it becomes ‘one’s own fault’, as Kirmayer argued. As is abundantly criticised in medical anthropology literature, the socioeconomic and political complexities surrounding physical suffering are conveniently reduced to mere biomedical factors by the discourse and practice of medicalisation. As a result, the prescription of antidepressants not only foreclosed other possible remedy options but also absolved the structural forces that contributed to the inaccessibility of care.
These two delegitimising clinical encounters have caught me off-guard and plunged me into the throes of shame and self-doubt. For quite some time, I saw myself as an unreliable patient with untrustworthy testimony and seriously considered that maybe I was imagining symptoms and fabricating reality in my mind.
What would truly help me deal with long COVID is sufficient paid leave, humane migration policies, generous academic adjustments, as well as accessible healthcare benefits that can cover a variety of treatment options – yet most of these are daydreams after decades of cuts to social welfare thanks to the neoliberal policies that atomised Australia. While I did not expect the medical community to address any of these structural barriers, an empathetic validation of my symptoms would be a welcome start.
A chequered future of hope and inequality
In fact, I am no stranger to the bumpy road to gain legitimacy against systemic denial and exclusion. I have been studying the Empty Nose Syndrome, a chronic and contested condition without a biomedically identifiable pathology and thus its symptoms and suffering not recognized by the medical community at large. And yet, to experience a similar ordeal first-hand (albeit to a much lesser degree) has shed new light on the structural inequalities and a space for hope in medical research and care.
Compared to the plight of many of my informants who are suffering from ENS, I am socioeconomically privileged enough to have found access to a support network of decent clinical and social services. My current care team acknowledges that patients need understanding and being listened to. They see medical care as a social process of empathetic witnessing of suffering beyond the mere alleviation of physical discomfort. Most importantly, they are all well-versed in the most up-to-date research of long COVID, although it remains pervaded by uncertainties surrounding aetiology, treatment, and recovery.
It is worth pointing out that given the massive global scale of the pandemic, long COVID received significant attention early on, resulting in substantial research funding and a much faster recognition by the medical profession, peak bodies such as WHO and the wider community alike. This is also largely owing to collective patient activism. Deborah Lupton has written a detailed account of how COVID survivors have been mobilised in online support groups and social media to collect evidence, advocate for awareness and funding, and take the lead in the co-production of the concept of long COVID.
I have benefited greatly from this global spotlight on long COVID. The unpleasant experience of my initial quest for legitimacy was buffered by the shared narratives and social support overflowing on Twitter, in Facebook groups, and from acquaintances in real life. These patient-led support initiatives have built what Turner called a communitas through sharing a common sense of liminality, marginalisation, and emotional affliction that arose from the clinical experience. In this safe social space, the once-questioned symptoms, no matter how diverse, have become accepted as the norms. We provide unconditional faith in everyone’s story, crafting a genuine sense of belonging and group identity in an otherwise unsettling liminal state. I no longer have to struggle alone to navigate the moral and social consequences of long COVID.
In contrast, many people suffering from other chronic illnesses like CFS and ENS are not as lucky. Long-term institutional neglect and the underfunding of research have pushed these conditions further onto the margins. Not to mention the structural inequalities that impact patients’ lived experiences in different local and global contexts. In my research, some sufferers of ENS are wealthy enough to afford expensive cutting-edge treatments overseas, while those at the bottom rung of the socioeconomic ladder are struggling to survive each day. Similarly, for long COVID, the online support groups are mostly inhabited by those who are educated, relatively privileged, and with access to online platforms. But how about those experiencing protracted war, violence, famine and environmental catastrophes? For disadvantaged groups all over the world, the impacts of long COVID may not be understood for a long time to come.
So while I have found my safe haven despite living with long COVID with an unknown prognosis, there remains so much more to be done for the rest of the world that is forced to live with the uncertainties of this disease and its potential crippling effect on the lives of individuals and on society.