Living with functional movement disorders: a tale of three battles. An interpretative phenomenological analysis

Abstract

Objectives

Functional movement disorders (FMD) have poor prognosis and high physical and psychological co-morbidity. Their pathogenesis remains unclear, clinicians often find them difficult to treat, and lack of agreement between healthcare providers and patients is common. This study aimed to explore the experiences of living with FMD to improve understanding of its impact and patients’ needs.

Methods

Ten participants across the UK were recruited online through a charity’s social media platforms. Semi structured interviews were conducted via video calls and were audio recorded and verbatim transcripts were analysed using interpretative phenomenological analysis.

Results

Three superordinate themes were generated from the data, representing the three battles fought by the participants: (1) intrapersonal: the tug of war with the secret agent within- the power struggle with symptoms; (2) interpersonal: navigating stigma and self-preservation; (3) systemic: pursuing hope and treatments against helplessness and passivity.

Conclusions

Loss of control, feelings of powerlessness and oppression by symptoms is often mirrored in participants’ experiences of seeking healthcare and navigating societal stigma. Active efforts to regain influence, improve quality of life and maintain hope can be jeopardised by others’ dismissive attitudes and lack of knowledge. Antonovsky’s model of salutogenesis is proposed as a useful framework for facilitating empowerment in FMD service provision.

Keywords:

• Functional movement disorder
• functional neurological disorder
• IPA
• qualitative study
• psychogenic disorder
• conversion disorder

Introduction

Functional movement disorders (FMD) involve disrupted movement, such as unsteady gait, tremor, spasms, muscle weakness, paralysis or dystonia that are understood to be caused by disordered brain function as opposed to pathology affecting brain structure (Thenganatt & Jankovic, 2019). The severity or frequency of symptoms can fluctuate, with an inconsistent or escalating pattern. FMD are a subset of functional neurological disorders (FND) which account for 16% of outpatient neurology referrals in the UK (Stone et al., 2010). The prognosis is often poor (Gelauff et al., 2019; Ibrahim et al., 2009; Sharpe et al., 2010), associated with worse physical and mental health outcomes and greater impact on quality of life than in people with similar symptoms that are due to structural brain changes or known disease (Carson et al., 2011). FMD patients are traditionally left without effective treatments (Cummins et al., 2015) even though active and targeted therapy is recommended (Gelauff et al., 2019; Hallett, 2016).

FND are categorised in the Diagnostic and Statistical Manual of Mental Disorders 5th edition (DSM-5) (American Psychiatric Association, 2013) as psychiatric conditions caused by a ‘conversion’ of emotional distress or trauma into a physical symptom (Freud & Breuer, 2004; Kanaan, 2016). However, the understanding of FND has evolved and the lack of an obvious psychological stressor in many people has led to changes in the DSM-5 diagnostic criteria which no longer require an identification of a psychological stressor. In addition, in the International Classification of Diseases 11th Revision (ICD-11) (World Health Organization, 2004) the separate symptoms of FMD (e.g. functional tremor) have been placed in neurological as well as psychiatric categories. Renewed interest in FMD, developments in neuroimaging, pathophysiological studies (Boeckle et al., 2016; Edwards & Bhatia, 2012; Ellenstein et al., 2011; Roelofs et al., 2019; Stephenson & Baguley, 2018) and increased recognition that not all cases of FMD can be explained by psychological trauma led to developments of newer models of FMD. The contemporary models include broad multifactorial conceptualization of FMD and emphasise the unique interaction of biological, environmental and psychological factors in FMD generation and expression for each individual (Cretton et al., 2020; Keynejad et al., 2019; Pick et al., 2019; Voon et al., 2016).

In the last 20  years a variety of treatments for FMD have been explored including physiotherapy, psychotherapy, transcranial magnetic simulation, botulinum toxin, therapeutic sedation, hypnosis, and electromyographic biofeedback (Espay et al., 2018). The most robust evidence currently exists for intensive FMD-specific physical rehabilitation with psychological input (Hallett, 2018). However, specialist treatment centres are scarce and a lack of clear care pathways present challenges to accessing treatments (Gill, 2019; Nielsen et al., 2020). The evidence for the effectiveness of interventions is growing but limited and many researchers and clinicians emphasise the importance of tailoring the interventions to the individual needs of the patients (Gilmour et al., 2020; LaFaver, 2020; Lidstone et al., 2020).

Partnership and collaboration have become especially significant in the light of patients’ dissatisfaction with care (Rommelfanger et al., 2017), oversimplified explanations for FMD (Nielsen et al., 2020) and low uptake of psychological therapies (Thomas & Jankovic, 2004). Patients have often been labelled ‘resistant’ to psychological accounts of symptoms, lacking insight (O’Connell et al., 2020; Sharma et al., 2017), and marginalised in the medical system and research for decades (Keynejad et al., 2017). It is crucial that patients become heard and involved in shaping the understanding of FMD and its treatments (Rommelfanger et al., 2017). An exploration of the experiences of people with FMD through qualitative studies is needed to inform treatment planning and service developments.

However, there are only two previous qualitative studies exploring experiences of people with FMD in the UK (Dosanjh et al., 2021; Nielsen et al., 2020). Nielsen et al.’s study (2020) was undertaken as part of a randomised controlled trial of physiotherapy for FMD in a specialist tertiary service. The authors employed thematic analysis (TA) to study interviews with people who had undergone a specialist assessment with a leading neurologist in the FND field and were awaiting physiotherapy. The findings were arranged into six themes: (1) the burden of living with functional motor disorder; (2) nobody knew what was wrong; (3) dissatisfaction with psychological explanations; (4) patients feel abandoned; (5) iatrogenic harm; and (6) powerlessness. A later study’s sample, conducted by Dosanjh et al. (2021), was identified by one of the co-authors from patients attending her NHS neurology clinic. Using interpretative phenomenological analysis (IPA), three main themes were generated reflecting the participants’ journey from symptom onset with its threats to identity and strain on relationships, through the ‘bittersweet’ experience of long awaited diagnosis and treatments, to challenges, and achievements in adjusting to life with FMD. Both studies recruited participants through local national health services. Most people with FMD do not have access to specialist services, physiotherapy or even neurological care, and thus the findings might have not captured the experiences of the significant proportion of this population. Consequently, the current study was proposed to explore experiences of people living with FMD across the UK, regardless of their treatment access or engagement with national health services.

Methods

Design

A qualitative methodology was adopted and IPA was chosen as an approach particularly suited to under-examined subjects (Smith & Osborn, 2015). At the time of conducting the project there had only been one published study on the topic (Nielsen et al., 2020) which used TA for data analysis. In the current study, IPA was chosen to facilitate an in-depth narrative that privileges the participants’ perspectives and meaning making (Eatough & Smith, 2017) embedded in their particular contexts whilst acknowledging an interpretative stance when doing so (Smith, 2009). It was hoped that this would enhance the current understanding of the FMD experience where the affected people’s accounts have often been neglected, unheard or misinterpreted by professionals as highlighted in prior studies (Keynejad et al., 2017; Nielsen et al., 2020; Rommelfanger et al., 2017).

Ethical approval for the study was granted by the Faculty of Health and Medicine Research Ethics Committee at Lancaster University. An additional approval was gained from FND Hope, a charity organisation involved in the study recruitment. Recruiting through FND Hope enabled the participation of people regardless of their engagement with or experience of the healthcare services and therefore widened access to those who would otherwise not be included in healthcare based research. Three experts by experience from FND Hope were consulted regarding the recruitment, design, and the results which helped ensure that relevant ethical and practical issues were adequately addressed.

Recruitment

The first ten participants who met the inclusion criteria and consented to the study were recruited. The participants had to be 18 years old or over, live in the UK, and have a formal diagnosis of functional movement disorder for at least twelve months prior to the interview. Participants were required to confirm (but not to evidence) that they had been diagnosed with either functional movement/motor disorder (FMD), functional neurological disorder (FND), functional neurological symptoms disorder (FNSD), psychogenic movement disorder (PMD), somatoform disorder, conversion disorder or other diagnosis with the main symptom as the diagnostic label, such as functional dystonia. At least one movement symptom as part of the functional disorder was required: paralysis or weakness in an arm or leg, muscle spasms, dystonia, myoclonus, tremor or gait disturbance. People who had co-morbid conditions were not excluded provided that they did not have another neurological disorder that could account for their symptoms.

FND Hope advertised the study on their website, social media, and patient engagement platforms: Twitter, Facebook and Health Unlocked. Out of 19 people who expressed interest in the study, five did not meet the eligibility criteria, four did not follow up after the initial response and 10 proceeded with the study, and were interviewed. All participants were given pseudonyms to protect their anonymity.

Some of the participants’ demographic data and symptoms’ characteristics are presented in Table 1. Three people were working full time, one was retired, one was a student, and one was caring for a child with a disability. Four of the participants’ occupations were in healthcare, two in social care, two in teaching, one in performing arts and one in law. The remaining four were unemployed as a result of FMD. All participants experienced pain or fatigue or both, and many had other functional neurological symptoms, such as speech problems, cognitive difficulties or seizures.

Table 1. Sample characteristics.

Participant^a	Age	Time since diagnosis	Main movement symptoms
Mark	53	6 years	Tremors, spasms, limb weakness
Hannah	34	2 years	Weakness in legs, drop attacks, muscles twitches, gait disturbance
Gemma	43	3 years	Episodic paralysis, leg drag
Emma	50	2 years	Arm weakness, leg drag
Harriett	32	14 months	Tremor, leg weakness
Frances	45	13 months	Gait disturbance, dystonia, body jerks, muscle weakness, episodic paralysis
Peter	66	2 years	Gait disturbance, myoclonus
Leyla	35	18 months	Spasms, gait disturbance, limb weakness
Lynn	24	18 months	One sided weakness, twitches, gait disturbance
Lisa	34	2 years	Tremor, gait disturbance, legs weakness

Names of participants have been changed to protect anonymity

Data collection and analysis

Ten semi-structured Skype video interviews were conducted ranging from 54 to 98 minutes. The interview schedule was used as a flexible guide to facilitate the discussions. Two members of FND Hope with lived experience of FMD were consulted on the interview schedule, the study’s aims, methods, and protocol.

A number of steps were undertaken to ensure validity of the study, informed by a framework of principles for qualitative research developed by Yardley (2008). The first author transcribed each audio recorded interview verbatim and analysed each fully before moving on to other transcripts. Initial impressions were noted during transcription and then examined to identify any bias - in line with IPA’s principles (Smith, 2009). The first transcript was coded separately by both authors and then compared. The codes were then checked by an additional study supervisor.

Thorough analytical notes were taken when analysing the transcripts, including the descriptive, conceptual and linguistic nature of participants’ line-by-line utterings. The notes were then organised into code clusters and initial themes. The main themes and subthemes were then generated for each participant and compared to generate themes for all participants.

The emerging themes identified by the first author (a clinical psychologist) were modified in discussions with the second author (a clinical psychologist and researcher) to increase consistency and reliability of the analysis. Further validation was strengthened by a final re-reading of the transcripts by the first author with the emergent themes in mind to check whether the themes were supported or challenged by the data. As a result, amendments were made to the themes to include examples of significant divergence and convergence within and across themes. The initial results were again discussed with the second author and shared with the two members of FND hope who provided their feedback and impressions. Later copies of the results were shared with a clinical neuropsychologist and a clinical psychologist who are familiar with therapeutic work with this group. Dialoging with these stakeholders enriched the analysis as the various interpretations and alternative perspectives were incorporated into the findings. Noticing, and bracketing of explicit and implicit judgements inherent in all interpretations highlighted not only personal but also cultural, societal and professional bias resulting from accepted discourses. However, it is the researchers’ belief that full ‘bracketing’ of one’s own assumptions is not achievable or necessary as every interpretation is embedded in a specific context that introduces bias. The researchers aimed therefore to contextualise the interpretations, especially those in the dominant narratives available in psychological research and theory.

Finally, copies of the full study findings were emailed or posted to all participants with invitation to provide feedback; no further adjustments were needed after the feedback.

Results

Three superordinate themes were generated from the data, representing the three battles fought by the participants: (1) intrapersonal: the tug of war with the secret agent within- the power struggle with symptoms; (2) interpersonal: navigating stigma and self-preservation; (3) systemic: pursuing hope and treatments against helplessness and passivity.

Theme 1: Intrapersonal battle: the tug of war with the secret agent within—the power struggle with symptoms

This theme relates to participants’ efforts to control symptoms and their own body, which was perceived as a host to or a hostage of a forceful entity to be wrestled with for control and identity.

The unpredictable and uncontrollable symptoms fuelled a sense of fear, frustration, bafflement, and urge to regain control. Gemma felt trapped and protested at the loss of control when experiencing paralysis: ‘I couldn’t talk, I couldn’t move my mouth, I was just making noises, sort of screaming, and wailing because I was angry and scared’.

Participants described the FMD as a powerful force orchestrating the symptoms according to its own agenda and having a mind of its own—capricious, uncontrollable, and resistant. Sometimes symptoms were envisaged as an expression of the body acting as a ‘safety valve’ in response to overload from specific triggers, e.g. exertion, emotional or physical strain or sensory stimulation: ‘If I push through pain, which I quite often have to do… It’s almost as if my body goes: actually, this is enough, you need to just stop’ (Gemma). However, the speculated protection was viewed as excessive, leaving Gemma feeling oppressed, rather than relieved: ‘It’s not an escape, it’s a terrifying trap!’.

Distraction techniques were employed to prevent or postpone symptoms and regain some sense of control and agency. However, some participants viewed this strategy as only effective in the short term and often prolonging the struggle. Lynn frequently attempted to ignore symptoms out of fear of becoming overpowered by them: ‘I think my main fear was that if I acknowledged what was happening… that it would suddenly overwhelm me’ (Lynn). Paradoxically, this exacerbated symptoms and was leaving her feeling defeated and retaliated against: ‘The more I tried to ignore it, the more it would slap me in the face’ (Lynn). Frances felt that letting the symptoms run their course was the only way of extinguishing them. For those who found their symptoms unresponsive to any influence, fighting felt futile. Symptoms were seen as an inescapable force dictating the rules and the only way to respond was to accept them and not waste the little valuable energy that was left.

Some participants understood symptoms as an error of their malfunctioning nervous system that could be corrected. They engaged in efforts to overpower symptoms with training of motor functions, taking pride in setting and achieving goals, which provided a sense of triumph: ‘I’m trying to teach my body: look, shut up, I’m gonna do this. It’s [a] psychological way of winning over’ (Peter). However, Peter found the body to be a fierce opponent resisting the conscious mind’s influence. ‘It is very difficult to impose a conscious decision on top of those… you try it and the mismanagement signals make your feet stop or not walk, walk a little bit then stop and fall over’. Successfully overcoming symptoms was sometimes described as involving unrelenting persistence, counterintuitive actions and mind tricks. Leyla described undergoing mirror therapy as one of the mind-tricking techniques to overcome the faulty neurological processing: ‘You’ve got to look in the mirror and imagine that you’re seeing the other leg and for the first few attempts I kept thinking: it’s a mirror, I know it’s a mirror!… but over time it’s easier’ (Leyla).

The battle with symptoms was fought not only for the control over one’s own body but also to retain a sense of self. FMD was experienced as claiming and violating the individuals’ identity. Harriett spoke about developing a dual identity to maintain her previous sense of self: ‘I’m two different people, the one that is covering up that I have a condition versus the one that actually now needs to recover from that condition’ (Harriett). The perception of self as independent, competent and able whilst witnessing oneself with FMD as dependent, restricted and disabled was a big challenge and felt irreconcilable: ‘It’s really hard ‘cause it’s like being in somebody else’s body… you’re left with this kind of not-you trying to be you… I think that was harder than learning to walk’ (Lisa).

Peter explicitly rejected the notion of disability: ‘No, no, no, no, I’m somebody who has limits on my ability, that’s what I’ve got, I’m not disabled, big difference [laughs]’. All participants wanted to preserve an identity that was built on positive experiences rather than defined by the deficits: ‘You have to look at the positive things… I just started up drawing, I never knew I could draw, you know, stuff like this. Finding a hobby that I can do, rather than one I can’t’ (Mark).

Theme 2: The interpersonal battle: navigating stigma and self-preservation

This theme relates to the participants’ experiences of unwelcome consequences of the FMD diagnosis prompting misconceptions and stigmatising attitudes from other people, including healthcare professionals. The participants had to navigate carefully the perceived risks and employed various strategies to mitigate them by concealing symptoms, using alternative diagnostic labels or withdrawing from contacts. Educating others was seen as aspirational but practised when the resources to mitigate the potential risks were available or outweighed the risk.

Participants found their symptoms could attract unwanted curiosity, suspicion or exasperation from others. Some participants felt insecure about being unable to identify a clear cause that would be understandable to others: ‘Even though I knew that what was happening to me was real, I still worried that because I couldn’t explain why it happened and what it was, that people wouldn’t believe me’ (Leyla). Explaining the diagnosis to others was daunting and burdensome. A lack of traditional tests to evidence the condition, its conceptual complexity, a lack of consensus amongst healthcare professionals and a lack of awareness of FMD in general left the participants feeling deprived of the usual concepts and ways of communicating a health condition.

Many participants experienced stigmatising attitudes to be the result of assumptions of a psychological cause of FMD or associated characterological deficits. They experienced the diagnostic label to be a prompt for others to scrutinise their behaviour or sanity and to undermine their credibility as a person or a professional. Mark felt that those assumptions, once acquired, were impenetrable and the attempts to challenge them were futile: ‘Some people have a fixed idea that it’s a psychological condition and that’s what hurts the most because they won’t listen. They think you’re just lazy or not bothered, that you’ve just given up. I don’t have the energy to try and put them right because … it’s an endless task’. (Mark). He chose to communicate his symptoms as ‘myoclonus’ avoiding the anticipated judgements. Harriett feared that the diagnosis, if known to others, would undermine her competence as a professional: ‘[colleagues] don’t know about what the condition is… I didn’t tell them. I didn’t want to appear weak… I liked being good at what I did and I didn’t want anyone to think that I couldn’t perform my job’. She told people she had a ‘natural tremor’ and took annual leave on days when she was too unwell to come to work. Emma found that telling people she had a brain injury made it easier for them to understand: ‘Some people can’t comprehend it, it’s hard to put into perspective for them, so by going: ‘I’ve got a brain injury’… I found that the easiest way’.

Most participants underwent a process of figuring out how and whether to disclose their diagnosis to others. Those conversations were difficult even with some family members, who struggled to grasp or empathise with the physical or the emotional aspects of the condition. Some participants sought professional support to prepare them for conversations with their partners and families.

Many participants found themselves particularly vulnerable when seeking medical help and disclosing their diagnosis. They felt silenced, shamed and often struggled to challenge communication conveying disbelief or blame: ‘I had a GP say to me: “[it’s] a unicorn condition” which I found quite offensive… I was taken aback and didn’t say anything but I wish that I had’ (Hannah). The combination of perceived prejudice and power of health professionals made participants feel unsafe in healthcare settings. They perceived their physical complaints being overattributed to FND and their diagnosis creating a barrier to receiving standard care for other ailments. ‘Now it’s on my medical record, I am really concerned that if I do have a stroke—because I can still get strokes or anything else—they’re gonna just assume it’s FND and write me off’ (Hannah). Perceived stigmatisation created mistrust and many participants decided to conceal their diagnosis, when possible and practical. Lynn felt she did not have the capacity to educate others or deal with potential prejudice when feeling vulnerable and in need of immediate medical care. Peter, who by his profession was used to speaking up and challenging others, willingly educated his doctors about FMD and often experienced it as rewarding, contributing to a positive change. He, however, also found it a tiring task, mentally, and emotionally.

A unique perspective was presented by those who were both patients and healthcare professionals. They feared disclosing their symptoms in their workplace knowing their colleagues’ misunderstanding of functional symptoms and fearing a negative judgement. Lynn described her shock when the consultant explained her diagnosis in detail: ‘I was like: oh my God. How have I come this far as a professional and not been told about what this really was?… I myself stigmatised against functional patients because I didn’t know any better… My colleagues had taught me: “it’s functional, they’re just making it up, there’s nothing we can do to help them, but you just have to go along with it”’. Those participants feared the shift in the position from a ‘professional’ to a ‘functional patient’, sensing it would endanger their credibility and ability to make themselves heard. Emma used her professional healthcare background to challenge her interviewer during a psychology assessment, striving to establish an equal, professional to professional relationship, and feel protected from the ‘functional patient’ narrative.

The participants experienced an internal conflict between the desire to address the stigma and the strain of doing so. They negotiated their position between disclosure and withholding of the diagnosis, weighing up the physical, social, and emotional burdens against their available internal and external resources. Fighting stigma through self-disclosure was often seen as virtuous or liberating but could lead to further depletion and exhaustion, already inherent to the condition. Avoiding disclosure of FMD maintained energy needed for recovery but often involved guilt or a sense of disconnection and exclusion from others.

Theme 3: The systemic battle: pursuing hope and treatments against helplessness and passivity

This theme relates to the participants’ striving to pursue treatments, knowledge, and maintain hope for recovery. This powerful but fragile process, already fraught with self-doubts, and fears of symptoms’ irreversibility, was threatened by perceived helplessness, ignorance or dismissal from healthcare professionals.

Most participants emphasised the importance of holding onto hope to maintain wellbeing and to find the right support. Leyla, Lisa, Lynn, and Peter had all accessed helpful treatments but only after a long and arduous journey that demanded stubborn determination, and often involved extensive social or financial resources. However, such pursuits of hope and treatments were often undermined by perceived passivity, helplessness or ignorance of healthcare professionals, seen as an additional, though avoidable, burden, and a barrier to recovery: ‘I couldn’t sit in a wheelchair without falling out because my tremors were so bad and they said, “maybe you should just go home, sometimes these things happen”’ (Lisa). Even when under ongoing neurological care, Frances experienced her appointments as wasteful and disheartening as they lacked an active plan and felt purposeless: ‘You go and see the neurologist, but they can’t do anything for you—“we’ll see you at the next appointment”—which makes you think, why go to the next appointment because what’s the point?… it feels like a waste of time’.

Participants often felt left to themselves to learn about and manage the symptoms. When researching literature they often found the information confusing, abstract or impractical. Emma, despite being a healthcare professional herself and an avid reader of research, found it challenging to make sense of her symptoms: ‘There is so much literature out there that takes you off on different tangents and you’re trying to look at “OK, what box do I fit in?” It is very confusing to say the least’. Participants looked to professionals for guidance and practical support with the symptoms, not just theoretical explanation: ‘I understood in principle what was going on… but I found it very difficult to apply it to me, just by reading it or just by having someone tell me… rather than work through it with me…’ (Lynn).

With a lack of clear guidance many participants initially employed random or unhelpful strategies, ending up feeling helpless or discouraged: ‘It’s like trudging through mud in a maze’ (Hannah). Some participants felt disheartened and hopeless after undergoing ineffective treatments. They felt given up on and abandoned, reinforcing the sense of FMD being a lost cause or unworthy of investment. At the same time healthcare professionals were seen as crucial to recovery, holding the expertise the participants felt themselves lacking. They continued to seek support and guidance, manoeuvring between the hope of finding a helpful and interested professional, the despair of being untreatable and the fear of being dismissed and shamed.

The instances of meeting professionals with knowledge of FMD and a proactive approach to treatment were often experienced as a turning point, an antidote to previously seen passivity and inertia, a renewal of hope. Lisa, after feeling given up on by doctors, met a movement disorder specialist and things changed dramatically: ‘He just went, “it’s FMD… your brain’s malfunctioning and the good thing is that we can get it functioning better again, we just need to do rehab…” and that’s what I did. As soon as I started rehab, I got a lot better’. Leyla felt stunned by the neurologist who worked out an active care plan with her, reinstating her hope and a sense of direction: ‘She was really amazing, it was almost like the starting gun for the start of a race… Instead of constantly being fobbed off by everybody else… she listened and said, “OK, let’s see what we can do”’.

After numerous rejections or lack of adequate care some participants found support outside the NHS: ‘The only professional support I get from a neurologist and from neurophysio I pay for… very good, extremely’ (Peter). Like Peter, Lynn and Lisa spoke about accessing effective treatments through unrelenting perseverance, private funding or social influence to find the right support against the systemic barriers: ‘I have a very persistent wife, she made a meeting with all the head people from the department and she just went: “we’ve got to figure it out because this is ridiculous’ and that’s when they found me a movement specialist” (Lisa)’.

There were also many participants who could not afford private treatments or did not have the same social or personal resources. Mark experienced benefits from physiotherapy, but he could not sustain it as the input in the NHS was limited. He has experienced gradual worsening of his symptoms since.

Advancing knowledge was seen by all as the main driver of change that could improve the understanding and treatment of FMD. They saw research as a beacon of hope and an active stance against uncertainty and resignation. Some were actively involved in their own initiatives and research projects, raising awareness and educating the public and health professionals. It provided a sense of hope and influence in an environment that otherwise felt stagnated, indifferent and resistant to change.

Discussion

This study offers insight into the experience of living with FMD through the lens of three battles fought by the participants to regain control, identity, dignity, and hope. The first theme represented an internal battle—with the malfunctioning body and a powerful alien force within it that threatened the body’s integrity and selfhood. Feelings of oppression, loss of control, confusion, powerlessness and entrapment reflect the findings of previous studies on living with FND (Fairclough, 2012; Gill, 2019; Phoenix, 2017) and FMD (Dosanjh et al., 2021). Loss of control over the body had been previously described as triggering a series of losses in life choices, activities and opportunities (Gill, 2019) which in turn lead to a loss of valued self-representations (Charmaz, 1983; Dosanjh et al., 2021) and a crisis of identity. It had been previously proposed that identity crises and changes are inherent to chronic illnesses (Anderson & Bury, 1988) and are forced by the split between the disabled body and the ‘old’ self (Charmaz, 1995). Previous studies of FND and FMD identified the fight between two identities—with and without symptoms—generating a sense of disconnection or estrangement from the dysfunctioning body (Phoenix, 2017) or the affected body part (Dosanjh et al., 2021), and a resulting battle to ‘not lose oneself’. These findings were also reflected in the present study with the emphasis on the threatening perplexity and seeming inexplicability of the symptoms.

Negotiating and bargaining for control was present in the accounts of all participants. However, the coping strategies employed varied depending on the extent of control they experienced and how they conceptualised FMS: as an unfathomable force with its own agenda, an oppressor and abuser, an authoritarian protector, an error of the nervous system or a representation of personal inadequacy. Many participants endorsed a mixture of different conceptualisations, fluctuating between them in a dynamic process of meaning making. According to the self-regulation model (SRM) of health and illness people construct common-sense illness representations to help them make sense of their experiences which then shape their coping responses (Diefenbach & Leventhal, 1996). Illness beliefs were shown in Stone’s study to predict a reduction in functional symptoms more than the number of symptoms, disability or distress (Sharpe et al., 2010). In the SRM model, perceived illness controllability is one of key dimensions of illness beliefs affecting health outcomes, psychological wellbeing, social functioning (Hagger & Orbell, 2003), quality of life, and engagement with health services (Petrie et al., 2007) across various physical conditions. Leventhal et al. divided illness controllability further into treatment control and personal control (Diefenbach & Leventhal, 1996). A lack of shared understanding and collaborative plan with healthcare professionals might have led to participants’ increased anxiety and reduced treatment control (Morgan et al., 2014).

Perceived control has been extensively researched in general health and wellbeing (Lachman & Weaver, 1998; Seeman & Lewis, 1995; Ward, 2013). Maier and Seligman in their reviewed theory of helplessness posited that the active personal experience of control over adverse stimulus inhibits a default neurological response of passivity. This time-limited effect prevents feelings of helplessness and is generalised to other situations even when faced with uncontrollable circumstances (Maier & Seligman, 2016). Related concepts of self-efficacy, sense of agency and sense of mastery have also been shown to facilitate a reduced sense of powerlessness (Kramer-Kile & Osuji, 2012) and improved health-related quality of life (Wippold & Roncoroni, 2020) in chronic conditions.

However, attempts to exert direct conscious influence over symptoms were found by some participants in this study to be frustrating or counterproductive, which is supported by findings in other qualitative studies (Gill, 2019; Phoenix, 2017). Indeed, common physiotherapy interventions for FMS involve training the affected motor function whilst diverting attention away from it (Nielsen et al., 2015) based on theoretical models explaining FMS as a failure in explicit movement control with automatic processes being preserved (Pareés et al., 2013). In this case, paradoxically, regaining control might be achieved through relinquishing efforts to control. Some psychological interventions, especially acceptance and commitment therapy (ACT) propose shifting the attention from the control over FMS towards achieving valued goals (Graham et al., 2018). Aujoulat et al. (2008) argued that the process of exerting control as well as relinquishing control are not mutually exclusive and that empowerment can be achieved by integrating both.

The internal struggle for control was made even more wearisome by others’ assumptions and expectations of such control. This leads onto the theme of the interpersonal battle with stigmatising views and oppressive attitudes experienced from other people, including healthcare professionals. Movement symptoms are often visible and expose the individual to others’ attention and curiosity. However, initial unfavourable judgements can instantly change to empathy when a diagnosis such as Parkinson’s, is disclosed (Moore, 2017). Conversely, the labels ‘functional’ or ‘psychogenic’ were found in this and other studies (Gill, 2019; Nielsen et al., 2020; Rawlings & Reuber, 2016) to evoke withdrawal of empathy, negative judgement, scepticism or confusion in social interactions and in healthcare settings.

Goffman (1986) defined stigma as a mark of undesired difference, causing rejection by society as a deviation from the established ‘norm’. The threat of rejection drives stigmatised individuals to conceal their unwelcome difference to pass as society’s ‘normals’. In this study the participants navigated between self-disclosure and its withdrawal depending on the significance of potential losses (e.g. losing valued professional credibility, mental and emotional exhaustion), available resources to mitigate the risks (e.g. strong supportive social network, socioeconomic status), and perceived chances of a positive outcome.

Some studies on liberation movements have highlighted the health impact of secrecy in the context of stigma, describing it as ‘private hell’, leading to preoccupation with the stigma, and poorer wellbeing (Wegner & Lane, 1995). Self-disclosure has been suggested as an antidote, to facilitate empowerment and improve self-esteem. In this study, some participants reported guilt or disconnection from others as a result of concealing their diagnosis. Corrigan (2018) recognised the tensions inherent in disclosure and advocated ‘strategic disclosure’, driven by the cost–benefit analysis. Many participants in this study engaged in a strategic disclosure and used alternative, socially acceptable and understood labels, such as brain injury. These difficult choices also reflect the lack of clarity and consensus in the field, with the terminology and theoretical explanations for FMD being revised and disputed (Bègue et al., 2019; Hallett, 2018; Rickards & Silver, 2014).

Despite a rapid growth of research uncovering the complexity of factors implicated in FMD, there are recent studies which describe functional symptoms as a psychiatric illness (Pourkalbassi et al., 2019) or state the presence of ‘severe deficits in personality functioning’ in people with FND (Søgaard et al., 2019, p. 546). This, as well as a sole reliance on psychological explanations in clinical practice, is likely to fuel misconceptions and attract stigma associated with mental illness or psychological difficulties (Goffman, 1986; Grubbs & Rommelfanger, 2018; Rommelfanger et al., 2017), making it hard for the participants to share the diagnosis with others or to see value in psychological approaches to treatment.

Dissatisfaction with psychological explanations has been identified as one of the dominant experiences in FMD patients by Nielsen et al. (2020). However, the authors suggested that patients’ rejection of psychological explanations might be driven by an attempt to distance themselves from the stigmatised population of people with mental health problems. Most participants in the present study either had or were planning to have psychological therapy and many openly admitted to some psychological difficulties, past or present. All participants actively engaged in examining the role of psychological factors in their symptoms but most found them insufficient to account for the symptoms. Some participants wished for the psychological cause to be true as they felt more equipped to deal with it. One participant chose to state depression and anxiety as a reason for absence at work rather than reveal the FMD diagnosis. This might suggest that for some people the dissatisfaction with psychological explanations might go beyond avoiding the stigma of psychological difficulties, and that the label of FMD itself might carry an additional, distinct layer of stigma.

A study by Rawlings and Reuber (2016) reported that patients with functional seizures perceived psychological explanations to be inconsistent with their experience of symptoms. It has been increasingly emphasised that for an explanation of FMD to be acceptable to the person with the condition, it must be applicable to the unique circumstances of the individual (Stone & Hoeritzauer, 2019). However, participants in this study reported feeling unsafe, stigmatised and disbelieved in healthcare settings, thus limiting the potential for shared meaning making which can inform a treatment plan. In a UK survey in 2011 44% of consultant neurologists believed there was an overlap between conversion disorder and feigning symptoms (Kanaan et al., 2011). Such views, alongside perceptions of personality pathology as an underlying factor in FND (Søgaard et al., 2019), are likely to translate into patients’ experiences of being invalidated and shamed, reflected in this and other studies (Dosanjh et al., 2021; Gill, 2019; Nielsen et al., 2020).

Some participants in this study accessed effective treatments but at the cost of enduring numerous rejections and through a vast array of personal, financial, and social resources. This highlights significant health inequalities in accessing treatments, potentially reducing chances for recovery in the disadvantaged groups.

Implications for practice

The participants’ experiences of fighting internal and external battles point to important issues of power and control in relation to their bodies, identity, place in the society and in accessing healthcare. It is posited that specialist interventions as well as wider systemic changes are needed to facilitate empowerment and engagement through responding to the unmet needs of this population: for regaining control, identity, dignity and improved health outcomes.

A model of salutogenesis (Antonovsky, 1979; 1987) could offer a useful framework for such changes. The model’s core concept, associated with good health and adaptive coping (Eriksson & Lindström, 2006)—a sense of coherence (SOC)—expresses the degree to which a person has a pervasive feeling that the internal and external stressors in their environment are (1) comprehensible—can be understood, are ordered and explicable, (2) manageable—there are resources to cope with them and (3) meaningful—the demands and challenges are worthy of investment. The experiences of participants in this study could be interpreted as a result of threat to SOC. It is proposed that interventions and services be designed and delivered with the view to facilitate SOC’s three elements: (1) comprehensibility—through supporting individuals and their families to develop shared, empowering and understandable narratives of FMD that are communicable to others, identify external and internalised stigma, and promote development of valued identities, (2) manageability—through developing resources and strategies to strengthen a sense of influence over symptoms and coping with less controllable aspects of symptoms; as well as increasing patients’ participation and influence in shaping the treatment, (3) meaningfulness—through setting up workable plans towards meaningful and relevant goals, valued by individual patients.

Psychological therapists are uniquely positioned not only to implement those recommendations in direct clinical practice, but to drive systemic changes and develop stigma-sensitive services through education, influencing and leadership. Clinical psychologists and other psychological practitioners have a role in highlighting and challenging power-laden and reductionistic narratives about FMD, and to facilitate culture of thoughtful, evidence-base and non-defensive practice.

Limitations

This qualitative, small sample study, aimed to detailed accounts of a particular group of people recruited through a particular organization. Because of this in-depth focus on a particular phenomenon, one of IPA’s requirements is that a sample must be homogenous on the ‘social factors or other theoretical factors relevant to the study’ (Smith, 2009, p. 50). However, how this homogeneity is defined varies from study to study. As Murray & Wilde (2020) note in their IPA guidance, people will always be more different to each other than similar. In this sample participants had similarities that were relevant to the phenomenon under study- they had movement symptoms, often other functional neurological symptoms, and they had all been recruited through a national FND charity. However, it is acknowledged that there were differences across the sample such as FMD symptom type, nationwide geographical location, and the treatments received. While consistent themes were identified across the participants, the diversity could be seen as a limitation from an IPA perspective and further IPA studies could therefore benefit from exploring particular experiences of people with specific movement symptoms, such as paralysis or tremor, or to focus on people’s experiences of particular treatments for FMD.

There are some potential biases to note about the sample. Given the recruitment route, it is possible that the current sample was more informed about FMD than others without engagement with information-based sites and online peer support. Also, healthcare practitioners made up 40% of the study sample which may have influenced the findings. Nonetheless, the experiences of these participants provided a unique insight and exposed the power dynamics and stigma in healthcare from an insider’s perspective.

The interviewer’s identity as a psychologist may have influenced who volunteered to take part and the content of the interview. The IPA method has a strong interpretative element and the potential for researcher’s bias needs to be acknowledged. However, all efforts were taken to embed the participants’ experiences and the researcher’s bias in the context of their cultural, societal, professional and personal influences.

Conclusions

This study illustrates the experience of people affected by FMD across the UK, in different stages of treatment and recovery. The participants described internal, interpersonal and systemic battles fought by them as a result of FMD. They depicted the search for control over their own body and identity, survival strategies in the face of societal stigma associated with FMD, and a struggle with barriers to accessing treatment within the healthcare system. A number of recommendations for clinical practice and service development were proposed. Antonovsky’s model of salutogenesis was suggested as a useful framework to guide the design and delivery of services to facilitate empowerment of patients and clinicians.

Acknowledgements

Many thanks to the three members of FND Hope who helped shape the project and provided feedback on the findings. Thanks too to Will Curvis, John Morris, and Catherine Parker for their help and support in the work and preparing this manuscript.

Disclosure statement

No potential conflict of interest was reported by the authors.

Funding

The author(s) reported there is no funding associated with the work featured in this article.

Data availability statement

The raw data are not publicly available due to ethical restrictions. The participants did not give consent for their raw data (i.e. complete transcripts) to be shared.