In the second instalment of her two-part piece, Alice Richmond reflects on her lived experience of FND in the critical commentary to her monologue ‘Barely Functional’.
People with functional neurological disorder (henceforth FND) or any form of functional symptoms, including ‘gait disturbances, muscle weakness, tremor, anaesthesia, blindness, pseudoseizures, paraplegia, paralysis, deafness, psychogenic non-epileptic seizures and aphasia’, have been viewed as malingerers and manipulators for decades (Ratcliff and van der Feltz-Cornelis, 2020, p. 144). A study published in 2020 aiming to ‘address the views of healthcare professionals (henceforth HCPs) towards patients with functional neurological disorder’ (Barnett et al., 2020, 1802), uncovered, through various surveys and papers, that 46% of neuroscience nurses working with conversion disorder, an alternative name for FND (Peeling and Muzio, 2024), [1] claimed patients were ‘manipulative’ (Barnett et al., 2020, 1804); a survey within a different hospital found that 45% of HCPs stated that people with FND were ‘feigning’ (Barnett et al., 2020, 1804); a survey of the staff within a stroke unit found that 78% felt they were ‘difficult to manage’ (Barnett et al., 2020, 1805). This work provides a chilling overview of HCPs’ opinions on people with FND and the extent to which these permeate 21st century healthcare. Throughout this article, the phrase people with FND will refer to people diagnosed with functional neurological disorder, or those exhibiting functional symptoms. This serves to anchor my work in people-first terminology and experience; people who suffer with FND cannot be defined by their diagnosis.
The long and complex history of FND, including proposed aetiologies and past treatments, help us understand why such views are overwhelmingly negative. FND affects more women than men, the largest studies currently suggesting 70% (Lidstone et al., 2022, 609), and its roots trace back to hysteria, a disease which takes its name from the Ancient Greek word for womb: hystera. The wandering, unfulfilled womb – the theory being that the womb would become neglected if the mind was too nurtured (Showalter 1987, 125) – was seen to cause functional symptoms such as ‘the seizure, and the globus hystericus, or sensation of choking’ (Showalter 1987, 130), all dubbed as the quintessential symptoms of 19th century hysteria. These functional seizures did not present with abnormal brain activity, and similarly the sensation of choking was not caused by oesophageal obstruction. These symptoms are clearly recognisable within the framework of FND, as laid out by Ratcliff and Feltz-Cornelis, and an association with feminine hysteria is thus cemented.
In the 19th century these symptoms were theorised to come from an excess of emotion. Affected women were not seen as fit wives and mothers. It did not take doctors long to notice that ‘hysteria was apt to appear in young women who were especially rebellious’ (Showalter 1987, 145), meaning, women who had aspirations outside of domesticity. Hysteria therefore became associated with the dreaded phenomenon of female over-intelligence and a scapegoat for not educating women to their potential. As such, FND was not just a woman’s failure to take her rightful place at the heart of the home, it provided a neglectful alternative for women who refused to conform. Indeed, Helené Cixous, quoted via Elaine Showalter, believed that hysteria posed ‘a kind of female language that opposes the rigid structures of male discourse and thought’ (Showalter 1987, 160). If FND was the creation of a female language then these women possessed the ability to express dissatisfaction with the patriarchal world they lived in. Unsurprisingly, male psychiatrists then quickly concluded that these women were untrustworthy troublemakers, determined to sacrifice and forsake social, traditional, and moral values for their own wayward goals. Consequently, efforts were made to cement these women’s position as the first hysterical manipulators and, reacting aggressively to this perceived threat, psychiatrists decided that ‘their therapeutic authority depended on domination over the patient’s language’ (Showalter 1987, 154). In removing this, they removed any power these women possessed and restored the natural patriarchal order.
Andrea Mayr discusses how institutions are ‘shaped by discourse and how they in turn have the capacity to create and impose discourses’ (Mayr 2008, 1). The institution of psychiatry had the capacity and will to exert their power over hysteric discourse and make it a scorned illness: harsh punishments, often taking the form of treatments, were developed accordingly. Charlotte Perkins Gilman’s The Yellow Wallpaper (1892) is a fascinating account of one such treatment: it details a few weeks in the life of a woman subject to Weir Mitchell’s rest cure. Showalter states this consisted of ‘total passivity, isolation, mental blankness, and […] an hourly schedule of phosphates, tonics, food, naps, and exercise’ (Showalter 1987, 141). Under the watchful eye of her ‘doctor-husband’ (Showalter 1987, 141), Gilman’s protagonist begs for stimulation but is denied any, eventually succumbing to a fit of frenzy where she believes there is a woman living in her wallpaper. It ends with her locking herself in the room she has been trapped in, functioning as a simultaneous triumph over her ‘doctor-husband’ (Showalter 1987, 141) and tragic confirmation that she has lost the ability to seek life outside her domestic prison. The irrefutable medical knowledge of the ‘doctor-husband’ (Showalter 1987, 141) is prioritised above all human experience.
Similar to this idea of excessive emotions in hysteria patients, people with FND are often said to have higher than normal stress levels, yet studies vary on whether people with FND do suffer stress more acutely or not. Carine W. Maurer et al. studied ‘the presence of co-existing stressors’ (Maurer et al., 2015, 1072) as ‘many patients with functional neurological disorders deny [their] presence’ (Maurer et al., 2015, 1072) and conclude their study by stating that a repeated emphasis on stress ‘may be unwarranted. Insisting that all patients have heightened current stress, even when they deny it, seems now to be a mistake that may well negatively influence the doctor-patient relationship’ (Maurer et al., 2015, 1072). Despite this, Sarah C. Lidstone et al. show that there is a spike of women in their early twenties who develop FND, attributing this to the idea that ‘women may experience disproportionate trauma or adverse life events at younger ages than men, predisposing them to dissociation and developing functional seizures earlier in life’ (Lidstone et al., 2022, 614). With this study pointing to a perceived psychiatric aetiology of FND, there is an evident divide in scholarly opinion on whether stress levels are a cause, by-product, or entirely unrelated. In this respect, I neglect to pick a side because the point I wish to express is not about the actual cause of FND but instead about how any proposed cause is presented and how this affects the doctor-person relationship and any subsequent treatment.
A common 21st century treatment for FND is to look at a website full of personal stories to discover more about one’s condition and seek support. Real websites such as FND Hope provide these tales. One featured story, Nicki MC’s, ends in the phrase ‘I feel as though I have fallen from Grace and that I’m in a never ending black hole. Please help raise awareness! I’ve come across neurologists that have never bloody heard of it before! (That doesn’t fill you with confidence!!!! )’ (FND Hope, 2024).[2] On a website for a charity called FND Hope this parting note does not feel hopeful, a fact addressed by Nicki MC themself. This is the website I was told to go to when I received my own diagnosis of FND, after I asked my neurologist to explain more about the permanent disorder she had diagnosed me with and was refused an explanation. There are more positive stories to be found on this site and others but to read such negativity at an incredibly vulnerable point in one’s life, goes beyond demoralising and makes one feel as if help will not come. In similar sentiments to those expressed in many of the stories on FND Hope, my goal is that in retelling my story there will be wider recognition that a desire to stop dealing with people with FND leads to poor and traumatic treatment.
Ultimately, the idea that people with FND are faking it is at the heart of the problem, and these discussions of feigning occur in very nearly all discourse surrounding FND; it is telling that very early on in their study Barnett et al. mention that it is ‘a distinct diagnosis from malingering or factitious disorder, where there is conscious intent to feign symptoms’ (Barnett et al., 2020, 1802). The need to clarify this speaks to the prevailing opinion that this condition is controllable. People with FND are ‘often stigmatised by clinicians who feel that patients are ‘“putting it on,”’ (Barnett et al., 2020, 1803), subsequently leading to lesser care being taken in their treatment. A direct quote from a HCP quoted in their study epitomises this view: “It’s frustrating. Because why would you actually fake a stroke? A stroke is life changing… disables someone for the rest of their life” (Barnett et al., 2020, 1807). This uncomprehending medical voice makes plain the extent to which FND is believed to be an attitude. The patronising nature of this judgment from HCPs follows any person with FND into their home and becomes their own ‘doctor-husband’ (Showalter 1987, 141).
Although FND’s turbulent history cannot escape its gendered nature, it remains to acknowledge that every person with FND, including those who identify as male, is affected by this patriarchal issue. With more time, more creativity, and more medical humanities, FND’s problematic past will not feed its perception in the future.
Notes:
[1] This term has come into use due to the debated idea of FND occurring due to the conversion of a mental health issue into a physical health issue. As this is contested this article only uses this term when citing secondary materials in which this term appears.
[2] Please note that this link contains some terminology that readers may find offensive.
About the Author
Alice Richmond is a PhD researcher at the Shakespeare Institute; her doctoral thesis explores bodily failure within the Shakespearean canon, and is grounded in literary and theatrical theory, as well as verging into the medical humanities. She is particularly interested in how perceptions of the physical body manifest themselves in early modern literature and culture. Alongside her studies, she is a keen, and established writer, published in Refresh magazine and performing at BBC Contains Strong Language, Verve Poetry Festival, and the University of Warwick’s Postgraduate Symposium. She is set to present a paper at BritGrad in June 2025. You can find her on Instagram @aliceerichmond.
About In Practice
‘In Practice’ The Polyphony’s creative practice research project, showcases multi-modal creative engagement with the lived experience of chronic illness, disability, caregiving and health from a range of creative practitioners within and beyond academic research. Founded by Aly Fixter and Grace Brimacombe-Rand, they wanted to bring their own creative practice and academic engagement with creative texts to the medical humanities digital community and foster new connections. If you are a creative person who explores their lived experience of health or the body through writing, art, photography, or any creative methods, please get in touch to share your work with The Polyphony’s audience.
References
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