As a method, phenomenology is known for providing rigorous qualitative descriptions of first-person experience with the goal of shedding light on the underlying meaning-structures that make experience possible. But these structures are not fixed and static, they are subject to modification, breakdown, or collapse in times of crisis. Although key figures like Martin Heidegger suggest these breakdowns are constitutive of the vulnerability of the human condition itself and can therefore erupt out of ‘nothing and nowhere’ (1962, 187), a life-altering event like a divorce, the loss of a loved one, or a chronic illness can trigger a structural collapse, disrupting our self-understanding and embodied familiarity with the world. But classical phenomenologists failed to address the way that the taken for granted assumptions and prejudices of the ‘natural attitude’ (natürliche Einstellung) can contribute to this collapse, prolonging and exacerbating the collapse. … [please read below the rest of the article].

Image credit: Dr. Yale Rosen via Flickr/Creative Commons

Informed by the work of figures like Simone de Beauvoir and Frantz Fanon, a ‘critical phenomenology’ began to emerge in the 1950s as philosophers began to examine how lived experience is already bound up in oppressive and discriminatory social conditions such as sexism (Beauvoir 1952), racism (Fanon 1967), and ageism (Beauvoir 1972) and how these power dynamics are often so close to us, so embedded in the habits of daily life, that we fail to see them. In this way, as Lisa Guenther (2020, 12) points out, critical phenomenology is more than just a philosophical project; it is also political by interrogating discriminatory power structures and questioning how these structures ‘permeate, organize, and reproduce the natural attitude,’ to such an extent that they shape our ‘ways of seeing, and even of making the world go unnoticed without a sustained practice of critical reflection.’

In their theoretically rich and provocative paper, ‘Individual Vices and Institutional Failings as Drivers of Vulnerabalisation,’ Havi Carel and James Kidd (2024) apply this brand of critical reflection to the healthcare industry in employing their conception of ‘vulnerabilisation.’ In this commentary, I draw on the lived experience of those suffering from ‘functional neurological disorder’ (FND), a disabling but medically unexplained condition that is often dismissed and invalidated by healthcare professionals, to underscore the significance of their project.

Formerly known as ‘hysteria’ and ‘conversion disorder,’ FND is an amorphous and protean affliction that can mimic nearly any somatic disease, where psychological distress is thought to be ‘converted’ into physical symptoms ranging from uncontrolled bodily movements, including tics, spasms, muscle weakness, and gait disturbances, to seizures and paralysis, chronic pain and fatigue, and visual, olfactory, speech, and hearing disturbances. The problem is that because the symptoms are incongruent with an organic pathology it remains neglected in terms of research, funding, and public awareness, even though it is one of the leading causes for neurological consultations and co-morbid mood disorders occur at twice the rate of equivalent neurological diseases and twelve times higher than the general population (Carson and Lehn 2017; Stone et al. 2020).

Individuals who suffer from the condition often report feeling this neglect from the healthcare system after receiving the diagnosis, viewing FND as a pejorative and demeaning diagnosis because, absent a biological explanation, the condition suggests that symptoms are somehow ‘unreal’ or ‘all in your head.’ This can prolong and intensify the existing vulnerabilities of those living with FND, something that I’m now intimately familiar with as I’ve been recently diagnosed with disorder.

Carel and Kidd introduce ‘vulnerabilisation’ to describe social institutions, practices, and prejudices that can exacerbate a person’s vulnerability. Here a distinction is made between ‘vulnerability’ and ‘vulnerabilisation.’ Vulnerability is the fragile and precarious state we all share, a reference to the inescapable givens of loss, illness, disability, and death that are structural to human existence. Vulnerabilisation is an action (or lack thereof) that intensifies the harms of these givens. An African American woman in her late thirties who experiences disabling functional seizures, for instance, describes her experience of vulnerabalisation in the context of racism. ‘Some people thought maybe I was on drugs and was in withdrawal. I feel they thought this because of my race, since I am black. I felt like they saw me as a crackhead, a crazy person’ (Canna and Seligman 2019, 6). Structural racism exacerbated her suffering through heightened experiences of shame and stigma. And, of course, the long sexist history of FND (née ‘hysteria’) suggests that simply being a woman can be a driver of vulnerabilisation.

As UK neurologist Suzanne O’ Sullivan suggests, being a woman may be the single biggest risk factor of those who develop FND. And this, of course, is not because women are more emotional or less resilient than men or because they have a hystera (ὑστέρα), the Greek word for uterus. It is, rather, because they are more often subject to acts of vulnerabilisation in the form of adverse and traumatic experiences that may play a role in triggering the onset of symptoms later in life. She points to recent data in England and Wales, where of the 6,634 reports of sexual assault against children, 5,5156 were against girls. And to the fact that adult women are far more likely to be victims of physical abuse, workplace harassment, and violence than men (O’Sullivan 2015, 281-284). O’ Sullivan goes on to describe how the sexist assumption that FND is a female malady continues to endure in neurology clinics today.

Even now, years later, as an experienced consultant, this view comes up time and again. I once made a firm diagnosis of [functional] seizures in a middle aged-man and, in reply, the male consultant who had asked for my opinion in the first instance made it clear that I could not possibly be correct. ‘Men don’t get psychogenic seizures,’ he states, reflecting almost exactly, I thought, the words of the French physician Jean-Baptiste Louyer-Villermay in 1819: ‘A man cannot be hysterical; he has no uterus’ (O’ Sullivan 2015, 283).

Here, we see the institutional failings of the healthcare system becoming a consistent theme in the sub-standard care that women with FND regularly encounter.

Carel and Kidd (2021) expand on these failings by exploring how the highly technical, complex, and bureaucratized structure of the healthcare system contributes to vulnerabilisation. Employing the term ‘institutional opacity,’ they describe how the system imposes high epistemic demands on patients, assuming certain forms of knowledge, communicative competencies, and abilities to navigate and make sense of the system. ‘When an institution is opaque,’ they write, ‘it frustrates individual-level epistemic agency. Who should I speak to? What are the right terms to use to make the requests? Am I only to be taken seriously if I use the right language—and if so, what is that language?’ (Carel and Kidd 2024, 11).

This frustration is magnified for FND sufferers because—due to diagnostic disagreement and lack of education among clinicians—there is no consensus regarding ‘right language.’ This is evident in the competing terminology used to describe the condition. Jargon like ‘psychogenic,’ ‘psychosomatic,’ ‘conversion,’ ‘functional,’ ‘somatization,’ ‘nonorganic,’ and ‘medically unexplained’ are all used interchangeably to describe the same condition, adding to diagnostic confusion. A man who lives with functional dystonia, writes, ‘[I feel] frustrated … with the hospital … ‘It’s talked about a lot… “probable diagnosis,” “possible diagnosis …” this is what we guess it is.” …. But not, “this is what we definitely think it is.’” And a woman who suffers from functional seizures describes her frustration in terms of feeling invalidated, ‘It was like they didn’t believe you… “well none of it makes sense so you can’t be experiencing all these [symptoms]… We’ll do some bloods and your obs and things” and like, “Oh well, they’re reasonable.” Just fobbed you off’ (Dosanjh et al. 2021, 332). For many, institutional opacity results in feelings of isolation, of being abandoned by the very people who are supposed to care for them. A woman with functional gait disturbance writes, ‘No, they never saw me anymore. I just felt as though I was discarded.’ (Nettleton 2005, 208).  And a woman with functional sensory disturbances and chronic fatigue describes this sense of abandonment and lack of support:

I don’t want them to pretend it’s something that it isn’t. […] But what I can’t accept is them saying ‘look we don’t know what it is, go away and leave us alone and stop bothering us.’ […] We don’t have a group like the MS society where we can all meet up and swap notes. We’re probably all in the same situation, you feel so shamed and huddled up and isolated … The biggest thing is the isolation you feel on your own and nobody understands you (Nettleton 2005, 208).

Thanks to the advocacy of prominent UK neurologists like Jon Stone, Mark Edwards, and Alan Carson, there is now a growing list of blogs, social media sites, and online support groups for FND, but this support has yet to make inroads into the healthcare system. Often experiencing co-morbid depression and anxiety, sufferers describe feeling overwhelmed by institutional opacity, frequently faced with limited access to diagnosis and treatment, denied benefit payments, and unable to negotiate the byzantine paperwork required to deal with benefit offices, insurance companies, and other third-party payers.

In their article, Carel and Kidd (2024) point to the fact that, beyond the scope of FND, at least sixty-nine suicides and suicide attempts have been linked in the UK to stopped benefits between 2014 and 2020. This, and other failures in the UK social care systems, led to a formal investigation and condemnation by the United Nations. More recently, in the US, Ivy League graduate Luigi Mangione has been celebrated as a folk hero on social media for murdering Brian Thompson, the CEO of UnitedHealthcare, with bullets marked with the words ‘delay,’ ‘deny,’ and ‘depose,’ a common refrain for an insurance provider that uses an AI powered algorithm to delay and deny claims and has the highest claim-denial rate in the county (Gil 2024).

Institutional opacity also plays a role in access to appropriate treatment which can lead to iatrogenic harm. Many sufferers are prescribed high doses of sedatives, tranquilizers, and painkillers which may blunt the symptoms in the short term but can have devastating long-term side effects, including dependency and addiction. A mother with functional seizures writes, ‘Doctors have loaded me up with anti-anxiety pills, anti-depressants, sedatives, and every calming medication out there to simply make me a shell of the … person I used to be’ (Reuber et al. 2018). And a woman with functional tremors says,

One of the consultants recommended that I took a glass of wine every evening. And it did relax me instantly. And even that if I took a glass of wine it would stop it, you know, for a while. But of course once you start you need more and more. Your body becomes reliant on it and I’m afraid I did become an alcoholic (Nielson et al. 2020, 2046).

The lack of effective treatments, in turn, leads to a chronic lack of clinical interest even though it remains one of the leading causes for neurological consultation. To understand FND, then, is to recognize that its mechanisms are poorly understood and that it does not conform to straightforward phenotypes. It has a complex, context-specific, and heterogenous symptom presentation that manifests differently in different individuals. For this reason, a multi-disciplinary treatment plan is recommended as the gold-standard, a coordinated and holistic plan that draws on the resources of physiotherapy, occupational therapy, psychotherapy, and, in some cases, speech-language pathology. But in the complex, technical, and highly specialized setting of the healthcare industry, where medical professionals generally work in disciplinary silos, and the culture is driven by principles of speed, efficiency, and cost-effectiveness, the coordination of therapies can be daunting, if not impossible.

In my case, this multi-disciplinary approach was something every neurologist and psychiatrist recommended but never helped administer. There was no coordination of care with neurology and psychiatry, with speech pathology, with physical, occupational therapy, or psychotherapy. Indeed, after my official diagnosis at the University of Florida, all the neurologist offered regarding treatment was an informational website called neurosymptoms.org, a website that ironically recommended holistic, multi-disciplinary treatment. In a forthcoming book I’m writing on the subject, I’ve found that reference to neurosymptoms.org was often the default recommendation at the conclusion of neurological consultations with little or no follow up. A woman with functional cognitive difficulties says her neurologist finished her consultation by telling her: ‘Here’s a website, go see for yourself what FND is all about’ (Rawlings et al. 2024, 95). The result is ‘You just feel like you’ve been dumped.’ (Thompson et al. 2009, 511) In my case, I was left on my own to try to cobble together an individualized course of care, but quickly realized that physicians and therapists had very little (if any) interest in or understanding of FND.

Complicating matters is the fact that the frustration sufferers experience when confronting the opacity of the healthcare system can be contagious, provoking either aversion from medical professionals or being ‘bright-sided’ (Carel and Kidd 2024), dismissing their struggles by being told to stay ‘positive,’ that you’ll ‘get better,’ or even that they should ‘be thankful’ that there is really nothing medically wrong. A woman with functional seizures writes of her physician,

He just said, ‘I tell you what,’ … ‘there are people like you out there.’… Seen a few, met a few, but, you know, it’s nothing serious, there nothing to worry about.’ He said, ‘it’s not epilepsy—be thankful for that (Peacock et al. 2023, 5).

The fact of the matter is conditions like FND represent a moral aporia, where there is no ‘good’ choice to be had (Frank 1997; Zaner 1993), but where one is still compelled to press forward, to go on living in a state of ambiguity and uncertainty. Bright-siding platitudes about FND not being a ‘real’ medical condition, that one should be thankful that it isn’t more serious, or to treat it as an opportunity for personal growth are not only insensitive; they exacerbate harm. Losing control of one’s body is a devastating experience that is only magnified when the sufferer doesn’t know why it is happening and there are few accessible treatments available. This helps explain why rates of suicidal ideation and self-harm are so high among sufferers (Güleç et al. 2014; Patron et al. 2022). As a woman with functional seizures writes,

I was physically having to use my arms to pull myself across the floor to be able to do anything … And I hated that I was even doing that … you end up feeling so negative about yourself that you’re like. Why am I even here? What’s the point? (Eaves 2024, 188).

Medical education and the healthcare industry continue to focus on diagnostic precision and acute medical intervention at the expense of more ambiguous, chronic, and mysterious disorders like FND, even if they are as distressing and physically disabling as the most serious neurological diseases. Despite the frequency of the condition and the life altering nature of the symptoms, sufferers are often passed along from doctor to doctor, waiting years to receive a diagnosis, let alone treatment. It took me eight months, two emergency room visits, four different neurological consultations, two psychiatric consultations, and two major research universities to finally get a diagnosis, and I was fortunate.

A recent study has shown that the mean time for a diagnosis of patients suffering from functional seizures is eight years (Kerr et al. 2016). This points to the significance of Carel and Kidd’s account of vulnerabilisation. Terms like ‘pseudo,’ ‘faker,’ and ‘malingerer’ are still employed in the healthcare system today. In the hospital, a sufferer might be referred to as ‘the functional patient in bed six,’ ‘not a real stroke,’ ‘pulling the wool,’ or even ‘a bed blocker’ (Rawlings et al. 2024, 216). Resting as it does at the intersection between neurology and psychiatry, FND remains the signature ‘orphan’ disorder, defying the dualism between mind and body. Physicians view it as a mental disorder and therefore not their business, and mental health professionals see it as a physiological disorder and therefore not psychological or responsive to psychotherapeutic intervention (Myers 2018). The result is sufferers ending up on a fruitless merry-go-round of tests, scans, specialists, and consultations, all in search for a cause of their suffering. As one woman says, more than anything, ‘I just want permission to be ill’ (Nettleton et al. 2005, 207).

References

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Categories: Critical Replies

Tags: conversion disorder, critical phenomenology, Frantz Fanon, functional neurological disorder, Havi Carel, hysteria, institutional failing, James Kidd, Kevin Aho, phenomenology, SERRC 1/21/2025, Simone de Beauvoir, vice, vulnerabilisation