Sneha Mantri //
This three-part essay is an examination of “nervous illness” as a reaction to the rising tide of rationalist scientific development in Western society, focusing on three distinct periods of technological change. In part 1, I examined the Enlightenment’s increasingly mechanistic view of body and illness; in part 2, I turned to the Victorian cult of the invalid as a resistance to industrialization. In this final section, I will look at the diagnosis and terminology of conversion disorder in the modern medical era.
Conversion disorder, as a concept, long predates electronic medicine. Although Sigmund Freud did not invent the term, he did articulate the conceptual model for conversion. As typically understood, this is the literal conversion of unconscious trauma into physical manifestations of dis-ease. It is thus different from older terms like “hysteria” or “neurasthenia” in important ways. The term “conversion” implies both the underlying psychic nature of the illness – the nerves are not weakened but traumatized — and the promise of cure: if the trauma can be uncovered, the conversion will be undone, and the abnormal behaviors must stop. And perhaps crucially, “conversion” is, at least theoretically, gender-agnostic; many early reports of conversion disorder arise from work with male veterans of the First World War.
But even though “conversion” implies a neat one-to-one link between trauma and symptom, the reality experienced by patients and physicians is far messier. This is reflected, in part, in the variety of terms and metaphors used to talk about conversion disorders, which range from “psychogenic” to “non-organic,” from “medically unexplained” to “pseudo____.” This proliferation in terms may introduce more confusion than clarity. A recent systematic review of preferred terminology found wide discrepancies between clinicians and patients, perhaps reflecting the lack of ease around the terminology itself.
Currently, within neurology, the preferred term for these illnesses is “functional neurological disorders,” (FND) which can encompass anything from non-epileptic attacks to functional tremor. (Although functional disorders can affect nearly every body system, they often manifest as neurological deficits or spells, and are one of the most common reasons for referral to a neurologist, comprising up to 60% of new patient visits in some ascertainment studies.) FND can be something of a catch-all term but is considered less offensive by patients than some of the older psychiatric-based terminology, and I will be using it in the remainder of this essay. Most electronic medical records and billing/coding documentation, by contrast, use terminology from the International Classification of Diseases, 10th edition (ICD-10), which classifies these disorders under “dissociative disorders,” implying some sort of trance-like state or a Jekyll-and-Hyde break in the integrity of personhood, neither of which seem to reflect the reality experienced by patients or interpreted by clinicians.
The challenges of terminology are further reflected in the way patients and physicians talk about the concept of FND. While physicians may rely on complex, extended metaphors (e.g. “hardware versus software problems” as a way to reference the difference between structural and functional lesions – recapitulating a Cartesian mind-body dichotomy that seems to break down in light of recently reported anatomical/radiographic correlates of FND, patients tend to focus on the physical manifestations of their symptoms and impact on daily life. This disconnect between patients and physicians has very real implications for treatment outcomes. In 2011, Kanaan and colleagues surveyed British neurologists about their attitudes to “conversion disorder” (their terminology) and their communications with patients, finding that 79% of respondents used coded language in their clinical notes, and nearly half did not send a copy of their note to the patient. By contrast, FND-focused websites such as NeuroSymptoms.org recommend a straightforward approach in discussing the diagnosis as well as intensive rehabilitation, ideally in an inpatient multidisciplinary setting.
Through much of this three-part essay series, I’ve outlined the ways in which “nerves,” “neurasthenia,” and “conversion” can be read in rebellion against a technocratic view of the body as an objectively knowable machine. Ironically, however, technology may also be a way forward for FND. Patient advocacy organizations, such as FNDHope.org, use videos and social media to raise awareness, reduce stigma, and provide support for patients with FND and their carepartners. App-based trackers can encourage people to rate their symptoms, allowing for longitudinal monitoring of relapses and remissions, as well as identification of triggers. Given that patients with FND seem to have altered connectivity of neural networks involved in self-efficacy and external/internal threat perception, using apps to provide a way for patients to regain agency over their symptoms may improve remission rates. The future of FND in the 21st century remains uncertain, but this new framework and terminology of the biological basis of FND may provide some insight, for both doctors and patients, into susceptibility, risk, and treatment.