Abstract
Functional Neurological Disorder (FND) is a prevalent, stigmatised and costly condition that has a significant impact on quality of life. Listening to the narratives of FND patients has been identified as crucial in developing an understanding of the disorder, yet few studies have addressed this and accounts have historically been neglected or misinterpreted. The current study aimed to explore the lived experiences of individuals diagnosed with FND. The research employed a qualitative design, using online one-to-one semi structured interviews analysed through Interpretative Phenomenological Analysis. Participants (n = 12) diagnosed with FND were recruited via the social media of relevant charities in the United Kingdom. Three Group Experiential Themes and eight corresponding Personal Experimental Themes are reported: (1) A battle fought alone: (1a) Bereft of care (1b) Physical and psychological isolation; (2) Interpersonal conundrums: (2a) Stigma from all directions (2b) A family affair (2c) Connecting with the ingroup; (3) Thriving through adversity: (3a) Moving through fear to grieving, then acceptance (3b) Fostering hope and self-discovery (3c) Finding meaning and purpose. Life with FND was a lonely experience, with limited professional support and physical / psychological isolation. Participants faced interpersonal challenges, with stigma common in both personal and professional relationships. Experiences of peer support were mixed. Participants managed the disabling impact of symptoms by reaching a place of acceptance, developing self-insight and practicing strategies such as mindfulness and gratitude. The importance of rediscovering purpose through meaningful pursuits was also highlighted. The study provides insight into the experience of living with FND, including the challenges and management strategies. It presents a call to action for greater investment in FND to achieve parity of esteem with other neurological conditions, suggesting potential practice implications.
Keywords
Introduction
DSM-5 describes Functional Neurological Disorder as the occurrence of one or more symptom effecting altered voluntary motor or sensory functioning, inconsistent with other recognised neurological or medical conditions (American Psychiatric Association, 2022). Symptoms cannot be explained by another disorder and cause significant distress or impairment. Presentations encompass a vast array of symptoms including; sensory, cognitive or visual changes, problems with gait/ balance or speech, headaches, involuntary movements, paralysis or functional seizures (Symptoms - FND Hope International, 2020). Common comorbidities include, fatigue, cognitive symptoms and psychiatric disorders (Carle-Toulemonde et al., 2023). The most prevalent subtypes of FND are functional seizures and functional movement disorder (Hallett et al., 2022). There are currently no biomarkers for diagnosing FND, historically a diagnosis of exclusion, a ‘rule in’ philosophy, is now favoured based on positive symptoms and tests (Perjoc et al., 2023). FND is the second most common reason to see a neurologist (Stone et al., 2010), accounting for 5–10% of new consultations. An international systematic review estimated the minimum prevalence of FND to be 80-140/100000 (Finkelstein et al., 2024) however this is likely to be an underestimate due to rates of under and misdiagnosis (Bennett et al., 2021).
The prevalence of FND varies across different populations depending on demographical and economical status. The diagnostic rate in females is two to three times higher than in men, the reasoning behind this is still unclear (McLoughlin et al., 2023). FND is more common in industrialized nations than developing countries, possibly due to variations in healthcare provision, and cultural perceptions towards psychological and neurological disorders (Mavroudis et al., 2024). Prevalence is also greater amongst those with poor educational attainment and low financial status, reflecting the social determinants of health and disease. Symptom remission is possible, however many individuals experience poor long term health outcomes (Keatley & Molton, 2022). Over time many find their symptoms fluctuate in severity or change in presentation (NICE, 2024).
International research has identified that FND is associated with significant direct and indirect economic costs (O’Mahony et al., 2023). Indirect costs have been found to be greater than medical expenditure, impacting both the individual and society. For example FND patients are more likely to be unemployed and in receipt of disability benefits than those with other neurological conditions (Carson et al., 2011). O’Connell et al. (2019) found employment rates dropped from 87.5% prior to symptom onset to 24.5% post diagnosis. Employment challenges combined with the cost of managing symptoms and medical care frequently results in FND patients experiencing financial difficulties (Rezaei & Stanley, 2025).
Regarding direct costs, a UK NHS resource study estimated an annual FND expenditure of between £13.5 million and £40.4 million, nearly twice the cost of chronic obstructive airway disease (O’Mahony et al., 2024). The highest expenditure originated from hospital admissions, GP appointments and A&E visits. Literature suggests healthcare utilisation and economic costs decline following diagnosis and intervention (O’Mahony et al., 2023). Delayed diagnosis therefore appears to be a prominent factor in FND healthcare expenditure, in addition to worsening patient outcomes. However research continues to find FND patients experience a mean diagnostic delay of 6 years, while up to 73% are misdiagnosed with another neurological disorder (Tinazzi et al., 2020).
FND considerably impacts quality of life, impairing physical, psychological and social functioning, causing similar or greater levels of distress and impairment as other neurological conditions (Carson et al., 2011). Symptoms such as restricted mobility can have a marked impact on daily living skills such as driving, dressing and leisure activities, leading to reduced life satisfaction (Mavroudis et al., 2024). Furthermore, impaired cognitive abilities and sensory challenges can have profound consequences on work performance and social relationships (Mavroudis et al., 2024).
Over time FND has assumed different names including hysteria, medically unexplained and psychogenic disorder (McLoughlin et al., 2024). Freud introduced the term ‘Conversion Disorder’ in 1848 to describe a phenomena whereby emotional conflicts are repressed and converted into physical symptoms (Keynejad et al., 2017). This terminology was later abandoned as neuroimaging studies identified the complex neurological activity involved in FND, highlighting the biological attributes of a disorder once oversimplified as a psychological response to trauma (Mavroudis et al., 2024). The latest DSM-5 removed the diagnostic requirement for a psychological stressor prior to symptom onset, which is not pertinent to all cases (Mavroudis et al., 2024). Whilst Freud’s ‘Conversion Disorder’ promoted the use of psychoanalysis in the treatment of FND, a biopsychosocial understanding is now favoured, acknowledging the role of psychological, social and neurobiological factors in predisposing, precipitating and perpetuating FND (Pick et al., 2018; Tarzian et al., 2023).
Despite the significant individual and societal costs FND remains under resourced; with few specialist clinicians, minimal coverage in Healthcare Professional (HCP) training and a lack of dedicated services (O’Neal et al., 2021). Although official management guidelines are lacking, the scientific community agree treatment requires a multidisciplinary approach based on individual need (Demartini et al., 2022). Clear non-judgemental communication of the diagnosis is considered the first step in treatment, and this alone has been found to reduce healthcare utilisation (Perjoc et al., 2023). Cultivating the patient’s understanding encourages acceptance of the condition and maximises the likelihood of successful intervention (Stone et al., 2016). However, an NHS service evaluation found people were frequently discharged following diagnosis with inadequate explanation and no follow up care (O’Keeffe et al., 2021).
The stigma associated with FND has been widely documented and attributed to the controversy surrounding FND etiology, with Freudian theory and archaic terminology continuing to dominate many arenas (McLoughlin et al., 2024). Furthermore, it’s positioning at the interface between Psychiatry and Neurology presents a challenge for modern medicine that traditionally endorses a false mind-body dualism (McLoughlin et al., 2024; Molton et al., 2022). Additionally, diminished interest in FND at a structural and organisational level, encourages a narrative which positions FND as ‘less deserving’ (McLoughlin et al., 2024).
HCPs have been known to attach negative labels to FND patients such as ‘manipulative,’ ‘demanding attention,’ and ‘impossible to help’ (Ahern et al., 2009; Yon et al., 2015). Uncertainty regarding the legitimacy of FND frequently extends to believing individuals have control over their symptoms and presumed malingering (Barnett et al., 2020; McLoughlin et al., 2024). The perception FND patients are less deserving of care than those with organic illness, has been shown to influence HCP decision making regarding intervention and onward referrals (Begley et al., 2023). Rezaei and Stanley (2025) described a ‘vicious cycle’ whereby patients are passed between professions, leaving the individual without appropriate support.
A survey by FND Hope Research International (2020) involving 503 participants found 81.6% believed stigma had resulted in poor treatment. FND patients often report feeling dismissed or disbelieved by HCPs, with stigmatising beliefs and stereotypes sometimes internalised (McLoughlin et al., 2024; Rezaei & Stanley, 2025). Individuals may identify as ‘crazy’ and ‘undeserving’, or else blame themselves for their condition and its impact on others (Foley et al., 2022). Stigmatising interactions with medical professionals can result in ‘othering’ whereby individuals set themselves apart from other patients, assuming they are different, with less legitimate needs (McLoughlin et al., 2024).
Individuals often report high levels of shame along with low self-esteem and an impacted sense of self (McLoughlin et al., 2024). A common coping strategy is to reduce the likelihood of stigmatising interactions, such as avoiding medical care, however this compounds difficulties in the long run (Foley et al., 2022). This situation is often mirrored socially as individuals can self-isolate from family or friends due to fear of negative judgement, although this only intensifies feelings of embarrassment and shame (Rezaei & Stanley, 2025). Patients often report difficulties satisfactorily explaining FND and its variable nature, feeling an obligation to prove its credibility (McLoughlin et al., 2024).
Although the last two decades has seen a resurgence of interest in FND, it remains underrepresented in research (McLoughlin et al., 2023). Mavroudis et al. (2024) attributes this to FND being a ‘borderland condition’ with neither Psychiatry or Neurology regarding it part of their specialty. Previous studies have prioritised exploring underlying mechanisms and examining intervention outcomes. Listening to and involving patients in progressing understanding of FND has been highlighted as a priority, yet only a handful of studies have explored the perspectives and experiences of patients, those that have tended to utilise a survey design (Rommelfanger et al., 2017; Varley et al., 2023). Furthermore, there is value considering FND as a whole experience rather than restricting the sample to FND subtypes as individuals regularly encounter more than one or alter between them over time (Hallett et al., 2022).
Qualitive research encourages rich insights which are beneficial when seeking to understand multifaceted conditions, from which meaningful decisions regarding service improvements can be made (NHS England, n.d). It empowers individuals to discuss relevant issues, amplifying marginalised voices and often highlighting new perspectives (Todres et al., 2009). This may be of value in the field of FND, as healthcare encounters are often shrouded by invalidation and mistrust (Foley et al., 2022).
The current study aimed to explore the lived experiences of individuals with FND through Interpretative Phenomenological Analysis (IPA). The aim was intentionally broad, allowing participants to discuss matters of most importance. To the authors awareness this is the first study to explore experiences of living with FND through IPA.
Method
Design
The research employed an exploratory qualitative design to analyse one-to-one semi structured interviews, through IPA. In line with critical realist ontology, IPA conceptualizes that reality is constructed and informed by double hermeneutics. The researcher seeks to make sense of participant narratives, who are themselves engaged in a mean making endeavor. This process is particularly pronounced in major life events, making IPA a popular strategy for exploring encounters with ill health (Smith & Nizza, 2022).
Participants
Participant Demographics.
Procedure
Study adverts were publicised on the social media pages of two FND charities. Those interested in participating were directed to contact the researcher and sent the study information. Interviews were hosted online to cater for accessibility needs.
Interviews were participant led, although guided by an interview schedule inspired by the research question and existing literature. Questions were intentionally broad such as “Can you tell me about what your relationship has been like with healthcare professionals.” The researcher employed active listening skills throughout which facilitated rich open disclosure. Interviews (M = 51:75 minutes) were automatically transcribed verbatim and checked for accuracy.
Analytic Strategy
Data was analysed using Pietkiewicz and Smith (2014) IPA guide. The first stage involved multiple viewings of the recording and re-readings of the transcript whilst making detailed notes. The researcher fully emerged themselves in the data, acknowledging any significant observations, including language use, context and initial interpretations. From these notes emergent themes developed which reflected a higher level of abstraction, capturing psychological concepts. Relationships were then sought between the emergent themes, clustering them according to conceptual similarities. Group and personal experiential themes emerged and were given a descriptive label. As an idiographic approach, individual experiences were explored in depth prior to making inferences across the group.
Rigour and Reflexivity
The trustworthiness of findings was increased through seeking to adhere to Nizza et al. (2021) guidance on high quality IPA research. This identifies four indicators of good quality IPA; a coherent, unfolding narrative; developing an experiential account: close analytic reading of the data; consideration of both convergences and divergences. The validity of findings was also increased by the researcher practising and reflecting on their interviewing technique with the research supervisor. A reflexive diary was employed in which the researcher detailed their thoughts, emotions and process of analysis. Knowledge production in IPA relies upon the researcher’s interpretation of what is said and the diary brought into awareness their own conceptions. An extract from the researcher’s diary can be found below. “I feel so frustrated. Not only are they managing this horrific condition but also the ignorance and judgement of healthcare profession’s whose role it is to care.” Reflection after Charlie interview.
Fully bracketing off the researchers own perceptions is however considered unachievable in IPA as data interpretation naturally introduces a degree of bias (Smith et al., 2021). IPA focuses on the researcher’s interpretations to decode participants’ interpretations and meaning making of their lived experiences “double hermeneutics” (Montague et al., 2020). Complete objectivity during analysis is therefore not the aim.
Ethical Approval
Ethical approval was granted by the host University. The research was conducted in line with The British Psychological Society’s Code of Ethics and Conduct (2021). Prior to involvement participants were required to sign an informed consent form. Verbal consent was reaffirmed at the start of the interview.
Results
Outline of GETs and PETs.
A Battle Fought Alone
One significant theme identified was the loneliness which arises from life with FND. Participants reported a lack of professional support feeling they were left to manage alone. Treatment was often dependent on their own research, and ability to self-advocate. Two PETs are reported: bereft of care and physical and psychological isolation.
Bereft of Care
All participants reported frustration at the lack of professional support. Whilst some found receiving a diagnosis provided initial relief, this dissipated with the realisation minimal intervention was available. Diagnosis was regularly experienced as invalidating and dismissive, with HCPs failing to acknowledge symptoms as genuine and having a significant impact on life. There was a dominant narrative of being forced to self-manage with an expectation to ‘get on with it’. “It’s just sort of like ‘Oh there’s nothing wrong with you. Get on with it...’ just a stamp on my medical record with no support.” (Rhonda) “From a professional point of view, they’ve done their job, they’ve diagnosed you…they’ve completely normalised trying to get through.” (Blake)
Many participants recalled no follow up care, being merely offered a piece of paper detailing a website address. Several used the term ‘scrappy’ to describe the paper offered to them by HCPs, which gave the impression symptoms were considered insignificant. In Lindsay’s case online signposting was conceptualised as offering a ‘cure’ therefore prevented a specialist referral. Trisha meanwhile felt rejected by the lack of responsiveness. “He [Neuropsychiatrist] has a waiting list of six years, and the Neurologist simply said, ‘No, I'm not even putting you on the waiting list because it takes ages to go through and by the time you're through, you'll already have worked through the websites and everything. So you will be fine’.” (Lindsay) “I was given his website and sent packing. You’re given information and sent away with it and told to manage it yourself…I think that was my biggest take away from diagnosis, the distinct lack of pathway as to what was happening next.” (Trisha)
Participants regularly believed they were more knowledgeable than professionals and took it upon themselves to self-educe and share their learning. This caused frustration, as it was felt this should not be the responsibility of the patient. “My GP… said ‘never heard of that. I don't know what FND is’. And he really valued me coming back, explaining things to him…In this day in age when there’s the internet…It took me 5 minutes…I felt really let down. We as a family, we felt really let down. I thought ‘I shouldn't have had to do that myself’.” (Kate) “Ambulance staff, they don't know what FND is. The day I collapsed outside in the wet…I had to tell them how to scoop me up. If you touch me in certain ways, I will just start spasming more.” (Russell)
Several reported FND was treated as the poor relative of other neurological conditions. It was felt other diagnoses were considered more valid and those patients more deserving of care. FND was perceived as the ‘poor relative’ of other neurological disorders. In the quotes below, the use of the terms ‘us’ and ‘we’re’ provided the sense that this unfairness is a united battle and shared experience within the FND community. “With Parkinson’s there’s a myriad of information. There’s a myriad of help. With us…you're on your own.” (Dwain) “I've driven everything and until we get better funding…in the same way that MS and Parkinson's patients get, it's not going to change. We're just going to hang in there until we do.” (Anna)
Participants described feeling failed by the NHS, with gaps in provision being compensated for by private healthcare and family support. “The NHS has been shocking…everything I’ve had done I had to do privately …If it hadn’t been for my family at that point I would have gone under.” (Trisha) “I was very let down by the mainstream medical service at first…going to the hospital was useless. They didn't understand…in the end my mum, she paid for me to see a neurologist privately.” (Kate)
As help was not forthcoming, participants regularly relied on self-advocacy. There was a feeling of having to justify and push for care, which could be challenging. “Every time I had to ask for everything…nothing proactive particularly about it, none of them coming up with their own ideas.” (Rhonda) “You have to be an advocate for yourself and that’s not easy in the early days. You’ve got to fight for absolutely everything.” (Anna)
Trisha seemed to have perceived the denial of care as a personal rejection. “My issue is not what they did, it's what never happened…You've got to be your own kind of ambassador…thinking to yourself ‘nobody wants to help me’.” (Trisha)
Rejection from healthcare professionals led to a sense of isolation, intensified by further social barriers.
Physical and Psychological Isolation
Almost all participants reported a significant reduction in social contact, spending marked amounts of time alone. Isolation was partly caused by physical challenges around accessibility. “Sometimes I struggle in terms of access…my world has imploded completely in terms of circle of contacts...if it wasn’t for social-media, I’d be almost completely isolated.” (Neil)
Fatigue also made social interactions exhausting, particularly when obliged to repeatedly explain symptoms. Consequently, some chose to minimise or terminate relationships. “You get exhausted from explaining yourself…you tell somebody for the 10th time, and it’s like “I can’t be bothered anymore, it’s easier not to see you.” (Rhonda) “I lost a friend because she voiced the opinion that FND…are just fake and used as and when you want to get your own way…I cut that relationship completely. I felt very tired even trying to explain that I have no control over it and I'm not faking.” (Lindsay)
Psychological factors were also relevant. For Trisha embarrassment around symptoms led her to withdraw from society while Rhonda’s anxiety around all the potential negative outcomes resulted in avoidance. “I still won't go out for a meal or something. Just can't eat in public…I hope I can get to a point where I don't care what anybody else says or thinks or the way I look or whatever. Suppose that would be a dream…It's my own inhibitions, really. You do feel like people are looking at you. You feel like people are staring…it is a bit of a messy affair, so it's not something that I really want people to see.” (Trisha) “My eldest wants to go down to Alton Towers and I′ trying to figure out how to do it…You feel rubbish then, cause you’re just like ‘I'm avoiding it cause I just could see all the possibilities that are gonna go wrong’.” Charlie acknowledged the detrimental impact isolation had on their mental health. “It effects your mental health. If I can get out I’m fine…but when you’re stuck indoors all day and you’re on your own it’s horrible.” (Charlie)
Feelings of loneliness were exacerbated by difficulties within interpersonal relationships, as emphasised in the second GET.
Interpersonal Conundrums
Stigma was commonly experienced in various forms, along with changes to roles and responsibilities within the family. Peer support groups provided a valuable opportunity to connect with others, although not experienced positively by all. Three PET were identified: stigma from all directions, a family affair and connecting with the ingroup.
Stigma for all Directions
All participants described stigma in some form. There was a focus on direct stigma from HCPs, friends/family, and the public. This mostly centred around others doubting the validity of FND, considering symptoms an active choice. Anna felt a need to convince others of the legitimacy of her FND, while Lindsay struggled to make sense of her friend’s attitude. She felt a need to explain herself rather than FND, which may suggest a perceived judgement regarding her character. “It’s affected my relationship with my children…in the beginning they didn’t believe in FND so I had to convince them this was actually a condition and something I have to live with.” (Anna) “One other friend said...“Do you talk your symptoms up?” That was really weird, it’s still something I can’t get my head around…I need to explain myself constantly.” (Lindsay)
Stigma did not only feature in personal relationships but was also encountered in public. “I've come home from a day out and I have to get on a bus. Sometimes my left leg won't move. I can't lift it up to get on…though they can lower the bus a lot of them don't, and one of them laughed at me. I was really annoyed about that. ‘Oh, come on. You can see I'm struggling’, it's the frustration.” (Russell)
Almost all participants reported stigmatising interactions with HCPs, particularly non specialists. There was the perception FND patients were considered time wasters and symptoms faked. Many reported feeling incredulous at the suggestion such a degree of disablement could be feigned. Multiple participants discussed stigmatising interactions with A&E staff. “One of their nurses said “In Africa we call snake, no one comes”. So basically saying I'm faking it. Why the hell would I want to fake having a seizure?” (Charlie) “I was sitting, shaking, going mad. “Oh look at that idiot there, he's seasick…You on a boat or something?” Just trying to be smart. I’m not bloody here because I wanna be.” (Frank)
Rhonda contrasted the attitudes of two GPs, she appeared to have internalised, the stigmatising attitude of the first, referencing it later in the interview. “He doesn't see FND as a proper thing…The younger GP seems to be more up to date with his knowledge. I’m not seen as much of a time waster. The other one just saw me like a crazy woman” “They’re not really recognizing it’s real pain…it’s going back to the fact that I’m a mental nutcase basically aren’t I?” (Rhonda)
Several other participants appeared to have internalised stigmatised self-concepts. Russell ascribed himself the identity of ‘not normal’ to make sense of losing friends. “I've lost a few friends. They won't talk to me…I think it's because you're different. You're, not normal…The normal friends seem to have disappeared.” (Russell)
For many the suggestion FND was a psychological condition prompted emotional reactions, with the assumption physical symptoms were perceived as not real. Some were also keen to distance themselves from the category of mental illness. “When your test’s come back absolutely fine. It’s like, oh God, people must think I’ve got Munchausens or something.” (Kate)
Several participants discussed stigma in relation to wider structural issues. There was a call for FND to be a higher priority within the NHS, with a desire for more specialist provision. Participants noted the false narrative that dominates society, which divides the body and mind, whilst conceptualising disability as fixed. Participants hypothesised that FND stigma may originate from it lying outside this framework of understanding. Blake discussed how FND doesn’t fit people’s existing schema of disability. Anna also experienced challenges communicating her symptoms within the context of society’s understanding of ill health. “It's confusing to people when you appear very able bodied sometimes and then other times cripplingly disabled. People still don't understand the concept of a dynamic disability and what that's really like. I think it's very strange for people to have to think outside of that box and not so black and white…It confuses people and makes them a little bit uncomfortable.” (Blake) “It's very hard to explain to people at the PIP office the difference between cognitive issues and cognitive problems...I'm intelligent, but I have cognitive problems.” (Anna).
The stigma experienced from various forums led an already disabling condition to have an even greater impact on quality of life. In addition to overt stigma FND also altered the qualities of family relationships.
A Family Affair
Participants reported FND changed the family unit, with the introduction of caring responsibilities that shifted relationship dynamics. Participants were forced to relinquish certain roles and adjust to a new identity, which could be challenging. Anna noted how her husband acting as carer, negatively impacted their relationship while Frank described how FND had forced his young children to mature. He used the term ‘bad’ to describe symptom flair-ups although this could also suggest a negative judgement about himself or his parenting abilities. “Hubby is down as my carer and that’s changed our relationship completely and not for the better. It’s killing our marriage at the moment…we now see each other in a completely different light.” (Anna) “The wains are kind of my carers. When I’m bad they know what to do with me. They’re the parents at times.” (Frank).
Participants recognised the impact of FND on others, which led many to identify as a ‘burden’. Anna described how the intensity of this experience fluctuated, while Neil had considered the concept of ‘burdensomeness’ despite not feeling it personally relevant, framing this as an advantage of his living situation. “I spend a lot of time seeing myself as a burden that waivers on different days…depending how much help I actually need or whether I'm having a good day mentally or not.” (Anna) “I live on my own. I have nobody here…I'm actually fortunate because it means I'm not inconveniencing. I'm not being a burden on anyone else.” (Neil)
Participants also felt culpable for not offering the same contribution as previously, there was a need to adjust the meaning attributed to previously assumed identities. Both Rhonda and Frank felt guilty for not participating in the socially expected activities of parents. Frank previously identified as the main financial provider and blamed himself for relinquishing this role. “You’re supposed to be able to do all these things for them and you just can’t. It has got me down in the past…I was the main…money bringer...you just feel crap. You feel like you’re letting them down.” (Frank) “I feel like I’m a rubbish Mum sometimes …she seems happy enough, so it’s more me. It’s Mum guilt.” (Rhonda)
Accepting changes to roles and relationship dynamics within the family was challenging for all participants. One strategy used to manage was connecting with others in a similar situation.
Connecting with the Ingroup
Almost all participants had experienced FND peer support groups, with mixed views regarding their benefit. Some found them a helpful forum to connect with others. The notion of togetherness encouraged a sense of safety, acceptance and collective understanding, inaccessible to outsiders. Dwain compared and contrasted his symptoms with others, although this didn’t prevent connection. Lindsay described how their shared experience provided permission to joke about painful situations. “We can get together and be ourselves...I'm the only one with jerks but there are other people far worse than me…you can go there and just think I'm home…You’re with other people that kind of get it, even though they might not have the same problem.” (Dwain) “We can kind of crack jokes about it…even if it's not necessarily similar symptoms, they can at least relate because they have the same diagnosis. So it's a very safe space and very reassuring.” (Lindsay)
However other participants distanced themselves from such forums, reporting they made them feel worse both physically and emotionally. They experienced them as negative environments, with a focus on complaining rather than problem solving. There was frustration attendees didn’t have a more proactive mindset with the assumption they ‘weren’t trying’. “I feel so depressed afterwards because all I feel people are doing is just moaning and groaning. Don’t give advice as to how to cope.” (Cindy) “Everything was really negative and I find that quite triggering actually…They were just wanting to focus on all their symptoms rather than finding ways around it. And if you did try and do that, you'd be accused of not being believed.” (Kate)
Although overall perspectives were mixed FND peer support provided a lifeline for many. Despite specifics varying all participant’s identified strategies and personal resources used to re-conceptualise their situation, inspiring hope and motivating progress. This is highlighted by the third GET.
Thriving Through Adversity
A significant theme generated was the journey towards re-establishing a meaningful life alongside FND. Individuals moved through grieving to acceptance with experiences re-conceptualised as an opportunity for learning and self-discovery, whilst seeking a new sense of purpose. Three PET were identified: moving through fear to grieving then acceptance, fostering hope and self-discovery, finding meaning and purpose.
Moving Through Fear to Grieving then Acceptance
Participants described a process of moving through fear to grieving, then acceptance of change. The onset of symptoms was a terrifying time as they often mimicked another neurological condition and were initially be misinterpreted as such, as with Anna. Fear was frequently shared by supporters, illustrated by Kate’s communication with her husband. “I came home and had no speech whatsoever...I was petrified that I’d had a stroke.” (Anna) “I can’t walk, he just looked at me and the shock on his face was horrendous…We thought I was dying. We thought there was something terminal going on and that I was going to die from it. We were terrified. So it was a really scary time.” (Kate)
Blake urged professions not to become habituated to the fear associated with the experience. “In terms of neuropsychology and neuropsychiatry…a lot of the time they're probably used to seeing severe symptoms…they don't quite appreciate how scary it can be.” (Blake) Not knowing how the illness would progress and how it would impact the future led to uncertainty and fear. This increased as participant’s read more about FND online. “There’s a lot of information that scared me…I just kept thinking, does that mean I’m going to get all of these things?” (Anna) “Researching about it was just mind boggling…I just didn’t know what my life was going to be.” (Cindy)
The potential for deterioration without an obvious precursor made making plans difficult. This uncertainty led participants to question how to continue in their current roles and whether the FND label would impact future opportunities. Kate worried about the consequences for her parenting while Rhonda voiced concern other illnesses would be missed. “How can I be a Mum with this? How can I be a wife with this?” (Kate) “What I do worry about is...if I actually had a stroke and the ambulance came out and they read ‘FND' and I get left.” (Rhonda)
The initial terror was followed by a grieving period which involved participant’s saying goodbye to certain aspects of their previous life. This incorporated tangible entities such as mobility, employment, hobbies, and financial stability as well as abstract qualities like spontaneity, independence, and self-efficiency. There was also the need to let go of previously imagined future plans and ambitions. Grieving was seen as an important and normal part of the journey towards healing and adjustment. Several had accepted the permanence of their condition and started to reconceptualise a new life acknowledging their limitations. There was no defined mourning period and the journey to acceptance was not always linear. “I’ve gone through the grief process...you have to go through that in order to get to the end which is acceptance…part of the healing process is to grieve for that old life and for the life you imagined you were going to have. You need to, reconcile with that and to acknowledge it.” (Kate) “I would say I grieved that whole year and it was grieving different things at different times…so to other people I would say give yourself time…to live with the condition and accept it.” (Anna)
Blake described a notion of radical acceptance, although they did not like the situation they had no other option. “There's had to be a lot of acceptance on the whole because you don't have a choice. There's to be acceptance in how you then move on with your life from here and your future goals.” (Blake)
Acceptance enabled participants to persevere and find peace with life despite the challenges. This was one of several strategies used to help nurture hope and resilience.
Fostering Hope and Self-Discovery
Despite the life changing impact of symptoms, participants highlighted multiple strategies that helped. Several referenced mindfulness, living in the present moment. They also stressed the individual nature of the condition. “You have to live in the here and now, you can’t afford to look too far ahead because it’s too frightening and you can end up catastrophizing.” (Neil) “At the very beginning I was kind of thinking ‘will that all happen to me?’... Don’t go down that route because everybody is so individual.” (Lindsay)
Such a mindset was part of a broader journey of learning and discovery. Many participants were able to identity something constructive from their experiences, often re-conceptualised as an opportunity to deepen self-awareness, teaching valuable life lessons. They described becoming more appreciative of smaller things and some consciously practiced gratitude. “I'm a stronger, more assertive, more balanced person now... this whole journey has taught us so much...We have time to stop and smell the roses now...Yeah, we're absolutely broke. We sometimes have to rely on the food bank. We're on benefits. We're constantly having handouts from my husband's parents. But strangely, our quality of life is better, it's a weird thing to say. We value simple things in life so much more.” (Kate). “Instead of looking for happy things, I'm now looking for glimmers and put those into my memory box...if I can find at least two things every day, I'm fine.” (Lindsay)
Although the fluctuating nature of symptoms instigated uncertainty, several participants used this as a source of hope. “Telling yourself ‘this will pass’ because everything will pass. And this is just a temporary moment.” (Lindsay) “Whatever the most severe symptom is it will always pass…even if you have to experience it again and again. It's just a moment of your brain going a little bit funny. It can be difficult to regularly remind yourself because sometimes it feels so long and horrendous.” (Blake)
The insight and reflections participants fashioned from their FND experience enabled them to identify valued entities.
Finding Meaning and Purpose
A key element that helped participants manage was engaging in meaningful pursuits. This distracted from symptoms and encouraged a sense of identity and purpose which had often been overshadowed by FND.
Many participants initially assumed they would need to abandon previous hobbies, however through adaption were able to reconnect with existing interests or discover new ones. “I'm a creative person. If I don't have creative time every day, I spiral into depression. I need to have that creative outlet. So initially I was worried that I wouldn't be able to do stuff…I just figured new ways of going around things…You can still have a good quality of life. It's just a different one, that's all.” (Kate)
There was often a watershed moment when participant's shifted from feeling powerless to taking action. Moving towards a stronger internal locus of control, participants acknowledged that despite FND they could still make behavioural decisions to influence their life. “It was either a case of ‘I'm gonna curl up in a little ball here’ and that's the way I went for a while and then I saw ‘I need to do something’.” (Trisha)
Increased mastery was particularly valuable given the unpredictability of symptoms, unknown illness trajectory, lack of professional responsiveness and reliance on carers, which contributed to feelings of passivity and helplessness. Activities which inspired competence alleviated this to some degree and increased self-belief. Blake discussed this in relation to music while Lindsay found it through returning to academia. “When you’re just freely playing it is a really good distraction. It’s just taken me a while to understand that I can carry on and I don’t have to, you know, be trapped on the sofa.” (Blake) “I'm able to actually do this. I'm able to do a group presentation…having the confidence to go back…is a massive confidence boost.” (Lindsay)
Meaningful activities also helped participants find a sense of purpose that had often been lost and encouraged an identity beyond the FND. “I find it very difficult not to have a purpose in life anymore...I started crafting and that’s something that really helped…it’s getting people knowing me as me again rather than the FND me.” (Anna) “[Photography] just keeps me going, if I didn’t have that I don’t know where I’d be…that was the turning point of my life...now I see a purpose.” (Russell)
Activities which involved contributing were particularly popular. Many participants were involved in FND research or worked as a peer mentor. This enabled them to find meaning in their suffering. “Having purpose keeps you going...I get my own worth from helping others, from contributing. Living basically not existing.” (Rhonda) “I got involved with the charity [X]…I think it makes you feel a little bit better about the stuff you're going through trying to take something from your experiences.” (Trisha)
This PET demonstrated that despite experiencing significant adversity participant’s developed resources to not only exist, but thrive.
Discussion
This study explored the lived experiences of individuals diagnosed with FND through IPA. The condition was associated with significant isolation due to minimal professional support and reduced social contact. FND caused interpersonal challenges, including stigma and changes to roles and responsibilities within relationships. Despite marked adversity, participants developed strategies to progress with life and rediscover purpose. Following diagnosis there was a shift from fear to grieving to acceptance, and experiences were re-conceptualised as an opportunity for learning and self-discovery.
A central theme in participant accounts was minimal and inconsistent professional support, leading to a sense of managing alone. Previous literature has identified FND patients frequently experience limited access to specialist intervention (O’Keeffe et al., 2021). Participants in the current study reported HCPs had minimal knowledge of FND, with this often extending to active stigma. HCPs frequently associate FND patients with malingering and less deserving of care (Barnett et al., 2020). A study by Yu et al. (2023) involving emergency care providers found 95% demonstrated minimal understanding of FND, with significant limitations in knowledge and inaccurate perceptions.
Participants found stigma particularly hurtful when perceived as an identity attack which contradicted the individual’s core beliefs about themselves. The suggestion FND was fully psychological attracted particularly strong reactions, with many equating it with being a liar. Bazydlo & Eccles. (2022) suggested functional patients are eager to distance themselves from the mentally ill due to societal stigma. Nevertheless, in the present study, many spoke openly about their co-morbid mental health conditions, suggesting this is not applicable to all.
Participants found the experience of diagnosis invalidating and dismissive, reporting feeling confused and frustrated by reassurances nothing was wrong. Humans crave comprehension, thus non-understanding provokes anxiety (Joos et al., 2024). When HCPs poorly communicate the biopsychosocial origins of FND, this leaves patients with low illness coherence, found to impact symptom management and outcomes. Diagnosis and treatment recommendations are more likely to be accepted by the patient when these discussions are had early and communicated nonjudgmentally (O’Neal et al., 2021). Literature suggests this alone is enough to improve quality of life and result in 31% cost-saving (Lagrand et al., 2023).
There was a recurrent narrative of being signposted to a website for information before being discharged with no clear treatment plan. It has been suggested that whilst online patient education is beneficial, it is inadequate as a standalone intervention (Perez et al., 2021). A previous study found when functional patients were left to self-educate, the information was perceived as confusing or impractical, resulting in the application of random or unhelpful strategies (Bazydlo & Eccles, 2022).
Treatment was often dependent on the participant’s own research and utilising this to self-advocate. This aligns with the patient empowerment approach, promoted through the increasingly dominant biopsychosocial model of health. However, the emphasis modern society places on personal responsibility over health, has led invisible conditions such as FND to be perceived as “diseases of will” leading to increased stigma (Valverde, 1998; as cited in Foley et al., 2022). Several participants appeared to have internalised this viewpoint, resulting in self-blame. Internalization of stigma shapes individuals’ internal beliefs, often resulting in feelings of worthlessness that limit recovery (Perez et al., 2021). Patient empowerment has also received criticism for alleviating HCPs of clinical responsibility (Marks et al., 2015), this appeared applicable in the current study as many believed without self-advocating no intervention would be received.
Previous research found individuals with FND report the greatest stigma from HCPs, although also describe stigma in personal relationships (Thompson et al., 2009). Stigma may originate from a lack of knowledge, dominant narratives around health (mind-body dualism) and association with historical notions of hysteria. A positive correlation has been established between experiencing previous FND stigma, anticipated stigma and reduced social functioning (Bailey et al., 2024). Furthermore, a high degree of social support has been found to protect against the harm caused by stigma in numerous health conditions (Foley et al., 2022). However, this study found isolation was a common experience for individual's with FND, with participants withdrawing from society and relationships due to physical, psychological and relational barriers. For some withdrawal was an attempt to avoid anticipated judgement and stigma. Isolation often had a negative impact on mental health.
Participants reported other people struggled to understand FND and felt obliged to offer repeated explanations, this process often became exhausting resulting in a decision to end the relationship. It is possible that dominant narratives around health and disability mean FND patients do not have access to the usual communication strategies used to explain their condition. It may be beneficial to equip individuals with strategies to facilitate these discussions.
Other interpersonal challenges voiced by participants included adjusting to changes within relationships, particularly when family members adopted caring responsibilities. Bazydlo and Eccles (2022) found functional patients experienced a battle between maintaining a self-concept which identified as independent whilst witnessing their reliance on others. This reflects the broader notion of identity change, which whilst not captured as a single theme ran across several GETs. Previous literature has found identity change is intrinsic in chronic illness with individuals splitting off their past from disabled self (Bazydlo & Eccles, 2022). In line with this, multiple participants appeared to identify with the disabled identity (DI), a self-concept incorporating the disability and feelings of unity with the disabled group (Zapata, 2021). DI has been associated with improved life satisfaction, self-efficiency and hope (Zapata, 2021). Participants described FND as part of their present and future self. Many valued the sense of belonging gained through peer support groups, although others found them extremely negative, focusing on symptoms rather than problem solving. This seemingly contradicts DI which conceptualises disability as an opportunity to develop personal strengths and take goal orientated action (Zapata, 2021). The reasoning behind the diverse perspectives was unclear. It could be attributable to specific group dynamics or facilitator competency. Equally it might be due to participants being at different points in the transtheoretical model of change (Marks et al., 2015).
A theme previously unexplored in the literature was rediscovering a sense of meaning and purpose. Through adapting, participants re-engaged with previous interests or discovered new ones, allowing them to connect with an identity beyond their FND. Participants noted the importance of not surrendering to FND but actively developing a sense of purpose, which has previously been linked with better health profiles and improved recovery from negative stimuli (Schaefer et al., 2013). Purpose incentivizes individuals to refocus on goals, re-evaluate negative events and reduces rumination. Furthermore, many participants were inclined to engage with activities that inspired a sense of mastery which has been linked with reduced helplessness and improved quality of life in chronic illness (Bazydlo & Eccles, 2022). Bailey et al. (2024) found FND patients reported minimal personal control over symptoms therefore tasks which inspired competence may lead to a sense of self efficiency that transcends across other life domains.
Clinical Implications
Participants in the current study were united in their call for action. There was a demand for parity of esteem between FND and other neurological conditions. If FND stigma is to be truly challenged this requires marked investment in research, training and specialist interventions.
In this study, gaps in provision were sometimes compensated for by private healthcare, and an association has previously been made between access to specialist FND intervention and socioeconomic status (Hingray et al., 2017). This highlights the inequalities experienced by disadvantaged groups, especially pertinent given that those with lower socioeconomic status are at greater risk of FND (Carson & Lehn, 2016). Currently national guidelines for the treatment of FND are lacking, therefore there is need to develop evidenced based treatment pathways. This would allow appropriate interventions to be offered more consistently and be less dependent on personal finances.
Many participants perceived themselves as being more knowledgeable about FND than professionals. Previous literature has established FND tends to be neglected in pre-qualification training, with HCPs learning from senior colleagues, found to hold more negative and outdated attitudes (Barnett et al., 2020). Nevertheless, change may be on the horizon, as the UK Neurology curriculum recently incorporated FND as a core topic (Ramsay et al., 2023). However, this study highlighted the need for those most likely to have contact with FND patients (GPs and A&E staff) to also receive training. This is reinforced by NICE (2019) which advocates neurological patients be supported to understand and manage their condition through standard care. Delivering specialist FND training would equip clinicians with the knowledge and confidence to offer evidence-based compassionate care and challenge the myths often igniting stigma. Nonetheless change will undoubtably take considerable time, effort and commitment.
Equipping patients with an understanding of FND at the point of diagnosis has been identified as crucial in impacting future outcomes (Stone et al., 2016). Providing good quality information in primary care (e.g. official information leaflets) may help communicate empathy and acknowledge the legitimacy of symptoms. Providing the patient with signposting information alone is not an adequate intervention however may enable clinicians to feel more confident having nonjudgmental discussions around FND.
Strengths and Limitations
There were multiple strengths to the present study. Firstly, the broad aim and semi-structured interview schedule allowed participants the freedom to discuss matters of most importance. This allowed the identification of previously unexplored themes and empowered individuals to share stories which have historically been ignored or misinterpreted (Bazydlo & Eccles, 2022). Furthermore, previous studies have failed to consider FND as a universal diagnosis, however there is value in doing so, as many patients experience more than one subtype (Hallett et al., 2022).
The interviews were conducted online, which presented both advantages and limitations. Whilst it restricted the sample to those that had access to and were competent using such technology, it fostered participation for those who would experience difficulties traveling to a face-to-face interview, a factor particularly pertinent to the study sample. Some research has criticised online interviews as a method of qualitative data collection due to limiting the richness of interaction, reducing social context cues (Lobe et al., 2022). However, this argument is disputed, with other research finding online interviews yielded greater immediacy than in person interviews (Lobe et al., 2022). In the current study the researcher’s non-verbal communication skills and small talk were used to build rapport, enabling participants to feel comfortable with sharing their experiences via the online platform.
A limitation of the study is that recruiting through the social media pages of FND charities could have led to selection bias; participant’s may have been more knowledgeable about FND, more engaged in recovery orientated action or more motivated to vocalize their experiences. Furthermore, individuals are likely to have been more accepting of their FND diagnosis, a factor known to influence treatment outcomes (Duncan et al., 2014). The variation in length of time since the FND diagnosis may also have influenced the narratives shared. Two participants failed to return the demographic questionnaire, which only took account of age ranges rather than requesting exact numbers. Whilst this eased form completion, asking for an exact age may have been helpful. These factors limit the generalizability of findings however this is not the aim of IPA; which focuses on exploring in depth the life-worlds of a small group of individuals to offer valuable insights into the wider phenomena (Smith et al., 2021). The emphasis is on transferability of meaning and theoretical generalizability across groups (Hefferon & Gil-Rodriguez, 2011).
Another factor which may have influenced the data includes the impact of FND on cognitive processes and several participants described “brain fog”. This was apparent during interviews as whilst communicating a stream of thought, some became lost and abandoned the narrative. As IPA relies on language to make sense of individual experiences this may have inhibited the transmission of important insights.
A further study limitation was the exclusion of those who had a mental health condition likely to be exacerbated through participation, which may have omitted some valuable perspectives. Due to the high comorbidly rates between FND and psychiatric conditions, such individuals were not automatically excluded but transparent communication was had beforehand around safety. This was felt to be a necessary precaution to reduce potential for harm to prospective participants whilst also being as inclusive as possible.
Finally the researcher’s predisposed views and experiences inevitably shaped the results. A central feature of the IPA is the double hermeneutic, findings are influenced by the researcher’s understanding of the participant’s interpretations of their experiences (Montague et al., 2020). Complete objectivity and full bracketing are not achievable. Nonetheless the trustworthiness of findings was increased through following guidance on high quality IPA research, including reflective journalling.
Conclusion
This study extends our understanding of FND by giving voice to the lived experiences of UK individuals through IPA. Participants described battling the condition alone, with limited interventions or support from healthcare professionals (HCPs). Following diagnosis, participants reported they were often left to self-manage FND and self-advocate for treatment, with treatment plans depending on their own research, and their ability to self-advocate. There was a shared feeling of neglect by the NHS and the perception that FND was regarded with less importance than other neurological disorders. Social isolation was commonly experienced, attributed to physical and psychological factors such as fatigue or shame. Stigma was experienced by all participants, both in personal relationships and from HCPs. This often concerned the legitimacy of FND being doubted and was identified both in direct interactions and at a structural level. Participants also found FND changed roles and responsibilities within the family unit which could be a challenging adaption. The experience of peer support groups was mixed, some valued the sense of connection and acceptance while others described them as unhelpful due to the negativity of the discussions. Participants reported various ways of managing FND despite the disabling impact of symptoms. Mainly, a process of moving through fear and grieving for their former life, to accepting the current situation. Secondly, participants mentioned discovering new skills or insights such as practicing gratitude for everyday moments. Participants benefitted from evolving their sense of self, finding fresh purpose and meaning through either adapting old pursuits or learning new ones. Participants were united in demanding change, calling for greater investment in FND and parity of esteem with other neurological conditions. This could include developing better quality guidelines, treatments pathways and investing in specialist services. The lack of understanding and knowledge amongst HCPs highlighted FND as a training need, particularly for those likely to have regular contact with patients. This article is a call to action to increase investment in FND, which despite being a costly condition for both individuals and society has been neglected in both research and practice for too long.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Ethical Statement
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author.