“This is real”, “this is hard” and “I’m not making it up”: Experience of diagnosis and living with non-epileptic attack disorder

PURPOSE
To use a qualitative research approach to explore adults' experience of living with non-epileptic attack disorder.


OBJECTIVE
The objective was to explore the experience of adults (18 years+) with a confirmed diagnosis of non-epileptic attack disorder (NEAD) across the trajectory of the disorder. The topics investigated included the onset of symptoms, the experience of non-epileptic attacks, the diagnostic process and living with NEAD.


METHOD
Twelve people diagnosed with NEAD who attended a tertiary hospital neurology department took part in semi-structured interviews. The data generated were analysed using reflexive thematic analysis.


RESULTS
Eleven women and one man with median age of 25 years took part. Three themes were developed: mind-body (dis)connect, a stigmatised diagnosis and a role for containment. Adults spoke about their experience of nonepileptic attacks, the diagnostic and management process and the impact of both nonepileptic attacks and the NEAD diagnosis on their lives.


CONCLUSIONS
Adults' experience's within the healthcare system across the trajectory of NEAD influenced their own understanding and trust in their NEAD experience, how they shared this with others in their social and work lives and how they managed their NEAD symptoms on a daily basis. The research suggests the need for a consistent, timely implementation of a rule-in diagnostic approach and multi-disciplinary management of NEAD. It is recommended that lessons be taken from theoretical models including the common-sense model and a modified version of the reattribution model to support the de-stigmatisation of this diagnosis to inform psychoeducation and professionally facilitated peer-support groups.


Introduction
People with Non-Epileptic Attack Disorder (NEAD), a subgroup of Functional Neurological Disorder (FND), experience paroxysmal events that can mimic epileptic seizures or other disorders, but are not caused by epileptogenic changes in the brain [1].Varying terminology is used to refer to non-epileptic attacks (NEA) including psychogenic nonepileptic seizures (PNES), dissociative or functional seizures, or pseudo-seizures [1], with ongoing discussions and consideration regarding best recommended terminology to consistently use [39,40,42].Diagnostic classification also varies.The DSM-IV and ICD-10/11 lists NEAD under the conversion and dissociative disorders, while the DSM-5 lists NEAD as a subgroup of the functional neurological disorders (FND) [2][3][4].A gold-standard diagnostic and management framework recommends a 'rule-in' diagnostic approach, confirming diagnosis using video-electroencephalogram (vEEG) and subsequent multi-disciplinary management for NEAD [5].NEAD can also be diagnosed by a clinical process, whereby stand-alone EEG known to capture a typical non-epileptic event is used.The latter is more typical in clinical practice due to availability of vEEG.
Progress in the theoretical, clinical and scientific understanding of NEAD is ongoing.Currently, it is hypothesised that NEAD results from heterogeneous neurocognitive dysfunction, perhaps involving the stress response and emotion processing pathways with attentional and metacognitive difficulties, as well as predictive coding and lack of agency [6,41].Risk factors for the development of NEAD have been proposed.
These include stressful life events, acute or persistent stress, relationship difficulties, illness beliefs, and psychiatric, medical and neurological comorbidities.Questions remain about the nature and direction of the relationship between these risk factors and how NEAD presents, is diagnosed and is treated [6].Most recent research concludes that for FND, the umbrella under which NEAD is diagnosed, a temporal relationship between stress or trauma and the onset or perpetuation of symptoms is not necessary for the presentation of the disorder.This is reflected by the omission of this criterion from the current diagnostic classification manuals [7,8].
Despite referenced progress in understanding [5], the diagnosis continues to be poorly understood by healthcare professionals [9] and people with NEAD [10].Timely, accurate diagnosis and associated referrals to appropriate interventions continues to be a clinical issue [11,43].People with undiagnosed NEAD are at risk of harm for unnecessary medication use, such as anti-seizure medications, investigations and procedures [5,12].Lengthy diagnostic processes also create an economic problem [13,14].
Controversial labels, clinical uncertainties and poor or confused understanding may compound the difficulties experienced by individuals presenting and living with NEAD [15].Those presenting with NEAD can experience a high comorbidity of psychological difficulties and disorders [16].These include depressive disorders (57-85 %), anxiety disorders (11-50 %), dissociative disorders (22-91 %), posttraumatic stress disorder (35-49 %), somatic symptom and related disorders (22-91 %), and personality disorders (10-86 %) [16].The presence of comorbid psychological diagnoses was correlated with more severe dysfunction and impaired quality-of-life for people diagnosed with NEAD [17].When compared to groups of neurologically-healthy people, those with epilepsy, and those with somatoform disorders, those with NEAD reported higher rates of mood, anxiety, dissociative and personality disorders [18][19][20][21].In relation to psychosocial factors, compared to those with epileptic seizures, people with NEAD report higher levels of stigma, which was negatively associated with quality-oflife [22].Given these research findings, it is an important step to understand these outcomes qualitatively from the patient perspective.
Previous qualitative research developed themes deemed important to participants' experience with NEAD at specific time points of the disorder trajectory [23][24][25][26].These include seizure events, receiving the diagnosis of NEAD, waiting for treatment and living with NEAD.It recommended interviewing patients over the course of their disorder to provide important evidence of NEAD disorder timeline and progress, and increase understanding from the patient perspective on the experience of NEAD to inform clinical practice [24].
We report findings from this qualitative study exploring adults' experience across the trajectory of NEAD.The topics investigated included the onset of symptoms, the experience of non-epileptic attacks, the diagnostic process and living with NEAD.Specifically we consider, (1) what is the experience of people with NEAD from first noticing symptoms of non-epileptic attack disorder, to (2) receiving the diagnosis and subsequently (3) living with NEAD?

Recruitment
Inclusion criteria were: (1) adults (>18 years) with a confirmed diagnosis of NEAD, (2) following video-EEG or a stand-alone EEG known to capture a typical non-epileptic event; (3) with sufficient understanding of the English language, (4) cognitive ability to provide informed consent and (5) with or without comorbid epilepsy.Those with 'tentative' or 'possible' NEAD were excluded.Purposive sampling based on a NEAD diagnosis was used.Sample size was guided by the concept of information power [27].Twelve participants meeting inclusion criteria were recruited from oneadult tertiary acute hospital neurology department outpatient clinic in Ireland from August 2021 to January 2022.
Two further participants expressed interest initially but declined participation at the interview scheduling stage.Participants engagement in this research was voluntary.They did not receive remuneration.

Data collection
Eligible patients were provided with participant information and informed of the purpose of this study during a routine clinical contact by hospital clinicians who were members of the research team.Once informed consent was provided, a mutually convenient time to conduct the semi-structured research interview virtually, using Microsoft Office (MS) Teams was agreed.The interview schedule was developed based on the existing qualitative literature [23][24][25][26].This study expands on previous literature whereby interview schedules focused on one particular experience or time point in the disorder trajectory by amalgamating these to understand people's experience across the trajectory of this diagnosis.This is available in Appendix A. Questions from the semistructured interview schedule were asked in order but used flexibly where participants naturally covered later topics.Immediately after each interview, a debrief was completed.

Data analysis
Interviews were recorded using MS Teams software and then transcribed and pseudonymised.Names, locations and other identifying features were removed during transcription.Interviews lasted between 36 and 90 min (mean duration = 59 min).Data were analysed using an inductive reflexive thematic analysis approach [28,29] by the lead investigator supported by supervisors in three supervision sessions.This iterative process involved review of the data to develop code labels and generate candidate themes.This was completed by clustering code labels that impressed as having a shared meaning.The fit of candidate themes and the variability of the overall analysis were critiqued by authors.The scope of the central organising idea of each theme, the relationship between themes and their place in clinical practice and the literature was reviewed.The lead author then returned to the data again and worked on defining, refining and naming themes.Core categories and subcategories were organized within each conceptual domain.This was an iterative process.
Data were interpreted from a critical realist epistemological standpoint.Participant experiences were considered approximations of reality, underpinned by existing social and psychological constructs [30].This approach was chosen over alternatives following reflection by the lead investigator on her own theoretical approach to research as a Psychologist in Clinical Training.She adopted an anti-authoritative role as an interviewer, with participants held in mind as experts on their own condition.This shifted to outsider role when clarifying health or medical terminology [28].
This research aimed to adhere to the following quality markers [31]: sensitivity to context, commitment and rigour, transparency and coherence, and impact and importance.

Ethics
Ethical approval was received from the hospital and university research ethics committees (reference number RS20-067 and approval ID SPREC052021-02), respectively.

Participant demographics
Eleven women and one man, ranging in ages from twenties to seventies (median age 25 years) took part.Six reported their relationship status as single, six reported they were either married, cohabiting, or in a relationship.Time from symptom onset to receiving a NEAD diagnosis ranged from one week to 60 months (median was 20 months).Four had a comorbid diagnosis of epilepsy.Demographic and clinical characteristics of the participants are presented in Table 1.

Themes
The data collected were generated into three themes: mind-body (dis) connect, a stigmatised diagnosis and a role for containment.Mind-body (dis) connect was developed with two sub-themes; the experience of nonepileptic attacks and the battle for help.The second theme is a stigmatised diagnosis.This has two subthemes named terminology and trust.The final theme developed is a role for containment.This has two sub-themes called the uncontained experience of NEAD and (un)containing healthcare system (see Table 2).Adults spoke about their experience of nonepileptic attacks, the diagnostic and management process and the impact of both non-epileptic attacks and the NEAD diagnosis on their lives.Quotes from the interviews are presented using their participant number (see Table 1).

Theme 1: Mind-body (dis)connect
A separation between mind and body was consistent across the dataset in how participants spoke about their experience of NEAD.This separation was identified across the trajectory of the disorder, in how participants experienced their symptoms, how they experienced the healthcare system and how they explained NEAD with their family, friends and in the workplace."It's all, you're slightly misunderstood…and then they're asking you direct questions, but I can't give the direct answers, because it is confusing (P7)";

Theme 1, sub-theme 1: The experience of non-epileptic attacks (NEAs)
The experience of NEAs themselves were described as a disconnect between mind and body.There was variance within this experience but altered consciousness was part of all participants' stories.

"…like walking into a cloud and it was like the brain just slows down and the body functions at a normal pace." (P4); "I can hear what's going on around me, but I can't respond and react" (P2); "it feels like I'm falling and then bang, I can't remember anything else" (P3).
Non-epileptic attacks were described as "unpredictable", "confusing" and/or "scary" to experience, whereby many participants did not identify a pattern that would help them to predict onset of a future NEA.Participants were often left feeling "vulnerable" and "not in control" trying to reorient themselves to their conscious awareness after a NEA.This sometimes required support from others around them, depending on where the NEA occurred.This impacted their decision on how to spend their time daily, should a NEA occur "You just feel really vulnerable and like stupid kind of…just cause you just, you're not in control" (P3); "my husband or daughter would bring me to sit down.My daughter would know by the expression on my face" (P4); Some participants did not describe trying to make sense of the NEA experience.

"well nothing did happen…I'm fine, I'm grand now, it's passed" (P2)
However, others argued that NEAs demanded them to reflect upon how they were living their lives.This involved considering the mind-body connection, their psychological world and their body and behaviours across the disorder trajectory.

"You can always ignore mentally but you can't ignore physically, if you're like on the floor" (P7)
The significant effect on participants daily lives from experiencing NEAs lead to the same response from all participants, to seek support through the healthcare system to help make sense of this disconnected experience.The NEA experience varied throughout the trajectory of NEAD, with participants describing that psychological intervention post-diagnosis supported them to better understand and manage the events.

Theme 1, sub-theme 2: The battle for help
The disconnect between mind and body that participants experienced during a non-epileptic event was replicated in their inter and intrapersonal interactions about NEAD.The disconnect was sometimes in their own understanding of health, the understanding of others such as friends, family and the understanding of their healthcare team.

"Okay, so I split it into two parts. The first is neurological…and then psychologically…" (P1); "my brother…he's very much like a medical model type…he doesn't really get the whole idea of functional neurological disorder…we've agreed to disagree and we just don't talk about it" (P11)
Across the trajectory from symptom onset to treatment and management, participants described a battle that mind and body connection seems central to.This manifested in seeking understanding, answers and effective symptom management.Participants engaged initially with the medical model of categorisation.Some participants experienced lack of knowledge when they attended a healthcare professional or setting for treatment.
"… paramedics literally laughed while I was in a seizure, when she [friend] told them what type of seizure I had…paramedics literally had to google the type of seizures" (P6); Some participants reported having had parts of their experience unheard or invalidated, "I felt slightly invalidated…understood this within <medical> disciplinary confines (P1); "…thought I was I was faking them.It was very traumatic and I don't need that off my professional…I need understanding and I need help" (P6); Throughout the trajectory, some participants seemed to fight a battle to be taken seriously in the assessment and management of their symptoms.This battle was harder fought where participants met an understanding that there is indeed a disconnect between the psychological and physical experience.It was as though when participants' difficulties were not organically identifiable, the validity of their experience and the presentation itself was called into question.

"there's this like, terrible idea years ago to separate the two [mind and body], when they should have never been separated. And this is case in point for non-epileptic" (P7);
Participants' experiences of this disconnect within the healthcare system translated back into their personal, social and work lives and influenced how they managed NEAD in those systems.Participants were better able to understand the diagnosis and explain it to those in their lives when NEAD was diagnosed by a multi-disciplinary team who explained the diagnosis and collaborated with participants to help them understand how the diagnosis fit their experience.Where this did not happen, doubt lingered.
"Because if a health care professional doubts me, why, why should I believe me?" (P6); or conversely; "<healthcare professional advised> that it can be something other than stress, which was good to hear…like a relief that, I can look into this now without saying, just passing it by saying no, like I don't think it's that" (P12); "Because for me it was a mental thing and the way I described it to people was that, my brain was so overloaded with everything…needed to shut off to reboot and unfortunately my reboot system with a seizure" (P6) There were examples of participants who felt listened to, diagnosed in a timely manner, and treated in line with what fit best with their experience of this heterogenous presentation within best practice guidelines.These participants seemed have fought less of a battle for help and gained helpful understanding their physical experience of NEAD and the psychological demands of dealing with it.
"I saw a <healthcare professional>…she was great.She did the best thing that she could have done for this particular patient… prescribed me a book to read.I just felt so, so validated by her." (P1);

Theme 2: A stigmatised diagnosis
A temporal relationship between stress or trauma and the onset or perpetuation of symptoms is not necessary for the presentation of NEAD.In this dataset, some participants connected life stressors with their experience of NEAD and felt this fit with their narrative.Other participants detailed life stressors and outlined that they believed they were unrelated to their NEAs.Interestingly, they felt this perspective was often dismissed in the healthcare setting during the diagnostic process.

"yeah, because I mean. I was doing fine up until then, so I kind of think that's the only trigger… I didn't deal with the <stressor> very well" (P11); "…kept putting it down to stress!… When I was depressed and I had anxiety… I've got all the help I needed like… this is not stress" (P12)
There were reports of unhelpful understanding and support within the healthcare system.
"…I was having a seizure and they just, I don't think they knew that I could hear them, I was aware of what they were saying…<healthcare professional> came in and started flicking water on my face and said to another <healthcare professional> that ehm, this isn't real, which was…absolutely horrible" (P12).
Post-diagnosis, psychological intervention is the main intervention offered and often participants reported long waiting lists.Some participants reported feeling isolated post-diagnosis, without clear understanding of the diagnosis.
"<healthcare professional> promised they wouldn't leave me out in limbo… how long more do I need to be waiting… I'm not getting treated with medication, but I'm still not getting treated on how to deal with these" (P4) Aside from psychological intervention, management for NEAD was typically neurology reviews.For some, these were experienced this as a "courtesy call (P6)" where it was felt that healthcare professionals did not take their experience seriously.Participants with comorbid epilepsy explained that their review appointments focused heavily on their epilepsy diagnosis, reflecting this led to uncertainty and self-stigmatising their NEAD experience.
"the reviews are not worth my, not worth either of our times…they don't touch on, this is the non-epileptic…it's very amalgamated, very unsure, very uncertain."(P1); non-epileptic they're telling me.I get in my head that there's nothing they can do for me here" (P7)

Theme 2, sub-theme 1: Terminology
Many participants described how terminology used by healthcare professionals contributed to their feeling of stigma about NEAD.

"called it pseudoseizures. And I was like, what, pseudo as in fake…illegitimate?…felt like frauds" (P1)
Epileptic seizures were often described as "actual" or "real" seizures compared to non-epileptic seizures.
"tonic clonic actual epileptic seizure" (P1); "mine is quiet and straightforward…in comparison to an epileptic seizure" (P2); Not fake that they're not real experience…but just in comparison <to epilepsy>, like you are not worse off.I just feel like it's measured, slightly" (P7) When discussing epileptic seizures, it impressed that participants held that the term 'epileptic' or 'epilepsy' was enough to convey the seriousness of that diagnosis.However, participants offered much further detail relating to NEAs and NEAD, as though participants were trying to convince the lead researcher of the reality and seriousness of the diagnosis.This was their experience at times in healthcare settings too; "I'm sitting here panting <imitates panting>, sitting here, trying to get my breath, and then I'm shaking and it was like it was getting worse" (P8); "I felt like I was crazy like, nobody was taking me serious…I had a broken leg, broken ankle, cuts and bruises all of my face cause I would just drop from a seizure…but because it's not epileptic, they're like, Oh well.You kinda just feel like you're pushed to the back and you just gotta get on with it like" (P10) It seemed the stigma relating to the terms used to describe NEAD had consequences in the healthcare setting across the disorder trajectory.These consequences were identified for some participants as exclusionary, othering, prejudiced and discriminatory.<on going to A&E with a NEA> "I was looking for help and they literally handed me one pill and told me to go home" (P6); "<healthcare professional said> 'well, I suspected they're non-epileptic anyways', I was quite confused by that cause I was like.Well, why?Because I've had tonic clonic seizures since I was eight.Why would you think that they're not epileptic?Is it because, like I'm a young female with mental health problems?Like, am I just being considered like, dramatic hysterical woman…?" (P1); "I remember ringing the <healthcare professional>… I was like, I think I'm gonna have a seizure and she was just like, is there anything stressful going on in your life?I said, well, I have a job interview coming up but I didn't, didn't feel nervous about it…do you think I've to change my medicine or change the dose or anything?And she said no, like I think you'll be fine.It's just you're probably just worried but I wasn't worried"(P3)

Theme 2, sub-theme 2: Trust
The overarching sense of NEAD as a stigmatised diagnosis influenced participants' trust around their disorder experience.Some participants seemed to minimise or mistrust their experience of NEAs until they had a non-epileptic event that resembled a 'typical' epileptic seizure.

"before I started having the physical kind of, seizures like, I kind of just thought I was a bit mad" (P10)
Participants' NEA experience was scrutinised and compared against epilepsy in the healthcare setting across disorder trajectory.The healthcare professionals trust in the reality of participants' reported NEA varied.

"just dismissed me and that's probably the worst thing that could have happened, because…from that moment on, I was completely in doubt of myself, and I didn't believe myself…even though it was happening… I had this whirlwind of doubt" (P6)
Where participants felt listened to and taken seriously, this supported them to trust themselves."<healthcare professional>…listened to me whereas you'll learn throughout my story, that I had a lot of people not listen to me and brush me off and tell me I'm lying" (P6) When participants felt stigma within healthcare settings, mistrust developed.This mistrust was referenced by participants when discussing healthcare professionals' belief in their reported experience, and subsequently, participants mistrusted healthcare professionals' ability to treat their symptoms and experience seriously and effectively.

"Get…the <healthcare professionals> and that, to get into their heads, what is going on in my head and try to help me. But they don't think they can help me" (P8); "it's just sort of a courtesy call rather than doing anything" (P2); "In order to be dismissive, you have to have some underlying or unconscious assumption that you know, you absolutely know what you're talking about…and I don't think they do" (P1)
This spilled into participants trusting those in personal and social lives to understand their NEAD diagnosis.

"I just totally withdrew from…life….that's why stigma persists, like deep down people think that I can control it" (P1); "friends wise, socially, uhm, relationships, yeah. Yeah, it's just, I don't tell a lot of people" (P4);
"because in a way it's kind of self-inflicted…so, not that I'd want to have epilepsy.But in a way, it'd be easier to have something like that" (P11);

"don't disclose my seizures to work which is really bad, but no one would hire me when I disclosed them! Literally, I got turned away by so many… because I was like I'm able to work and not working made them worse" (P6)
Variance in this trust subtheme was noted.There were examples of experiences where healthcare professionals informed participants regarding NEAD, what is known and unknown about the presentation and its management.For example, where healthcare professionals provided books to participants and this was positively received; where the NEAD diagnosis was communicated by multi-disciplinary team members able to answer participants' questions relevant to their own professional training; timely development of treatment plans; and healthcare professionals asking which terminology suited the participant's experience and noting this on file for future communications.These examples were identified as de-stigmatising, inclusionary and helpful.Although these participants, continued to face stigma, it was somewhat negated by the presence of validation, connection and subsequently trust.

Theme 3: A role for containment
The uncertainties participants reported along the trajectory of NEAD are numerous.There impresses a role for containment.The concept of containment being referred to is derived from the psychotherapeutic practice domain [32] which is concerned with the interplay between thoughts and feelings and particularly the significance of anxiety on peoples' behaviour and responses.Anxiety in this instance refers to participants' anxieties from managing the many uncertainties across the trajectory of NEAD.It does not refer to the unsupported temporal relationship stress or trauma and the onset or perpetuation of NEAD.Uncertainty was detailed in the experience of NEAs.

"Well, I don't know but I was gasping for breath, you know, panting and stuttering like that, and I thought I was having a heart attack!" (P8);
There was uncertainty in the diagnostic process.

"before I got diagnosis of the non-epileptic…there was a lot of to-ing and fro-ing in my head. Between excitement and anticipation and then nerves and anxiety. Kind of wanting that answer, but afraid of it at the same time." (P9); "it's an answer without being an answer. A condition without reason" (P2).
Confusion and a sense of being unsure was described by some in the management of NEAD post-diagnosis within the healthcare system.
"it is confusing…they <healthcare professional> don't touch on, this is the non-epileptic…it's very amalgamated.It's very like, they're very unsure, very uncertain…And so it <symptom management> was very on me… in terms of like a care pathway like when I got out.So it was about getting sort of, that privatised, private health" (P7)

Theme 3, sub-theme 1: The uncontained experience of non-epileptic attacks (NEAs)
The non-epileptic event itself impressed as the opposite of feeling contained, more likened to a lack of control over one's own conscious experience.For those who could not consciously recall the seizure event, they reported feeling "vulnerable", concerned for safety, that they "couldn't control it" and relied on external markers or reports from people in their environment describing their experience back to them.Those with some conscious awareness experienced reduced control over the non-epileptic event too.They "waited for it to pass" and "knew it would end".
Participants were continuously challenged by the unpredictable and uncontrollable nature of the NEAs.Their attempts to regulate themselves and manage their environment around this unpredictability impacted their daily lives pre and post-diagnosis.They were further challenged by difficulties like tiredness, low mood, anxiety.
"it stopped me going out and doing things…was breathlessly depressed" (P1); "being very tired afterwards <a NEA> and then, after,…I would get more panic sensations, hyperventilation and I kind of, you know that, dissociative kind of feeling" (P5); "my energy will run out really quickly and I'd be tired a lot of the time…it just is a struggle" (P12) The depth of energy required by participants to manage the experience of NEAD was demanding.Here, it seemed that psychoeducation, social support, helpful contact with their healthcare team and psychological therapy facilitated containment.<best friend, worked together> "she fully knows everything…she'd be like, it's okay, don't worry about work…she's like, it's fine, leave it!I'll get around to it if I can." (P5); <healthcare professional> actually got me all the information I could possibly want on them <NEAs>.So, she gave me a huge booklet.Ehm, the <healthcare> wanted to put me on anti-anxiety and anti-depression medication.And <NAME> actually told him no! Which is why I like, I, love her so much."(P6); "The frequency has changed now that I've like, got my shit together like… talk therapy basically."(P7)

Theme 3, sub-theme 2: (Un)containing healthcare system
The physical presentation of NEAD requires assessment and management within the medical model.The familiarity of this model initially returned a sense of containment to participants when they sought professional help.However, uncertainty was returned where a 'rule-out', lengthy diagnostic process occurred and this impressed as further uncontaining and disempowering for participants.

"now sometimes I thought oh god, would someone tell me what it is, rather than what it isn't…was like a pin cushion for a while" (P2); "I had to keep going back to my <healthcare professional> and it was like Groundhog Day. Every time I went back…" (P4); "<healthcare professional recommendation> I kind of felt like I had to go along with it because. Like I kind of felt like, if I don't do it, it's like a black mark against me" (P11)
This uncontained experience was compounded when there was an absence of naming NEAD as a differential diagnosis until the point of diagnosis, and furthermore where limited information was then provided post-diagnosis.Here it impressed that receiving the diagnosis was perceived by participants as unfamiliar and confusing, leaving participants living with NEAD in limbo.

"I don't think they were being like actively being malicious or, like you know, secretive or whatever, but, it was just unclear" (P1); "I still don't really understand it to be honest" (P3); "I'd never heard of it. I've never heard of anybody with this" (P11); "I did so much research and I still don't understand it like…left in the deep end a bit…like, I've no information on like what I have" (P3); "<healthcare professional> promised they wouldn't leave me out in limbo… how long more do I need to be waiting… I'm not getting treated with medication, but I'm still not getting treated on how to deal with these" (P4)
The opposite was identified when participants were made aware of NEAD as a differential diagnosis earlier and a 'rule-in' diagnostic process occurred with information provided and signposting at the point of receiving the diagnosis.
"had an answer…a name to what was happening, which is something I didn't have for nearly two years.So that was extremely important that I had a name (P6); "I think, once I got the answers and I knew where we were gonna be going from, I kind of felt that OK…we're getting this ball rolling here.This is gonna start to help me and we're gonna get somewhere now" (P12) Those who understood the varied presentation of NEAD, how the diagnosis fit to their experience and the treatment options, impressed as relatively contained post-diagnosis.This translated into a more positive experience of living with NEAD, compared to participants where these conditions for containment were not present.Some participants expressed a wish to meet others diagnosed with NEAD, to share their experiences.No participant reported having met another person with NEAD.One followed the story of a person with the diagnosis on a social media platform.
"the less we talk about it, the less real it is, and the more you talk about it, the more real it is (P6); <to meet someone else with NEAD>"…Great!I'd say I'd be good mates with him" (P8)

Discussion
This study provides an understanding of participants' experience of NEAD across the trajectory of the disorder, from symptom onset, through diagnosis and living with the disorder.Three themes were developed from a critical realist epistemological standpoint: mind-body (dis)connect, a stigmatised diagnosis, and a role for containment.
The symptom presentation of NEAs varied between and within participant experience across the trajectory of NEAD but always involved a description of some level of disconnect between mind and body.The mind-body (dis)connect continued to be part of the story of the diagnostic and management process.In some participants' experience, healthcare professionals were informed about the complex aetiology of functional disorders, and facilitated a multidisciplinary collaborated timely, rule-in diagnostic process followed by collaborative development of a management plan.This facilitated a mind and body connection for participants, validated their experience and helped them make sense of and live with, their NEAD diagnosis.Prior to this process, some felt they were "mad".For others, there were reports of lengthy, disjointed diagnostic processes during which they were repeatedly informed of results indicating there was "nothing wrong".This often occurred alongside the experience of their symptoms persisting or worsening, leading to feeling dismissed and confused.Descarte's mind-body dualism was suggested across the trajectory of NEAD.It seemed that participants, and sometimes healthcare professionals, worked from an understanding that mind and body are separate.Where there was an understanding that no identifiable organic cause for a presentation meant nothing "wrong", participants experienced a battle in seeking understanding, accurate diagnosis and management of symptoms.
Author's suggest the idea of mind-body separation may both underlie and perpetuate NEAD as a stigmatised diagnosis.The historical context of functional disorders have arguably laid the foundations for this with its historical roots as a feature of hysteria [33].From our data, it is proposed that through the prejudiced associations of functional disorders, participants experienced stigma within healthcare settings.This translated into their daily life and how they managed NEAD symptoms.Unfortunately for some, this led to self-stigmatisation.This research posits that there seems to be a residual prejudiced belief that people with NEAD have some level of control over their presentation.
Terminology has long been identified as problematic in this area of FNDs and their sub-categories [34].Language is loaded with explicit and implicit meaning, and participants described unhelpful terminology, particularly 'pseudoseizures'.The term used in this study is NEAD.
However, this itself communicates what NEAD is not, rather than being consistent with a 'rule-in' approach, reflecting what it is.Unhelpful, stigmatising terminology impacted participants' belief and trust in the reality of their experience.Participants felt they were dismissed, that their non-epileptic events were not "real", or like "actual" seizures, often comparing these to "actual epileptic seizures".Unfortunately for some participants, the experience of NEAD as a stigmatised diagnosis across the assessment and diagnostic phase impacted the treatment and management phase.Those participants often did not believe healthcare professionals were knowledgeable of NEAD and thereby questioned their professional capacity to help them manage their symptoms.There was variance noted in participants' experience, which may demonstrate some progress in clinical understanding of functional disorders in healthcare settings.For example, some participants experienced the gold standard recommended framework through a rule-in diagnostic approach and multidisciplinary collaborative management of NEAD [5].Furthermore, helpful interventions occurred for some with positive impacts on their experience living with NEAD.However, lengthy wait lists were common.
There are many uncertainties that participants managed while adjusting to life with NEAD symptoms, which varied throughout the trajectory of NEAD.Participants' experience of feeling contained or uncontained during this time varied too.As noted, the concept of containment being referred to in this study is the interplay between thoughts and feelings and particularly the significance of anxiety on peoples' behaviour and responses [32].Anxiety here does not refer to clinical comorbid presentation of anxiety.Rather we refer to managing anxieties arising from uncertainties about their NEAD experience across the disorder trajectory.Uncertainty often occurred where participants experienced an unstandardized diagnostic and management framework, which authors consider were perhaps moderated by levels of stigma.Some participants described vividly experiences of invalidation, being dismissed and not taken seriously, which maintained and sometimes perpetuated an uncontained experience of NEAD.Opportunities for participants to be contained by their healthcare professionals were identified by researchers throughout disorder trajectory.Where these opportunities were missed, it perpetuated participants' feelings of uncertainty and anxiety around their NEAD experience.Where containment occurred, participants demonstrated reduced anxieties about their NEAD experience, a clearer awareness and understanding of NEAD and how they could manage the daily impact of NEAD on their lives.
NEAs were perceived by participants as "uncontrollable" and "unpredictable".The symptoms of NEAD, the diagnostic process and postdiagnosis management were described as "challenging", "lonely", "isolating", "uncertain" and "unpredictable".Participants reported that they wanted their healthcare professionals to be honest and clear about NEAD, what their healthcare professionals know and did not know about the presentation and the prognosis.They did not ask for certainty, rather they sought the validation that their experience is real, that they are believed, and they are not alone in the difficulties that living with NEAD presents.This provided participants containment, and influenced how they related to themselves and others in their daily lives managing NEAD symptoms.We hold that these findings from this dataset support the following recommendations.
This research builds upon previous qualitative research that highlighted the importance of understanding seizure events, receiving the diagnosis of NEAD, management and living with NEAD from the patient perspective [23][24][25][26].This study adds understanding by exploring participants' experiences across the trajectory of NEAD.There are clear clinical implications suggested from the themes developed.These include recommendation that the gold-standard recommended diagnostic and management framework is consistently implemented whereby a 'rule-in' diagnostic approach, using videoelectroencephalogram (EEG) and subsequent multi-disciplinary management for NEAD is standard practice [4,5].Our results suggest education should be provided to healthcare professionals on NEAs and NEAD as standard clinical practice.Some conceptual links may be drawn from literature on medically not yet explained symptoms (MNYES).It has been summarised [35] that numerous investigations, incorrect diagnosis and fruitless attempts at treatment, with a narrow focus on somatic aspects of a complex problem can lead people with MNYES to be less satisfied with healthcare, perpetuate their presentation and cause healthcare costs to become excessive.Similar experiences have been reported by some participants in the current study relating to NEAD.Previous research [36] discuss intervening at the level of healthcare professionals by applying a modified version of an earlier reattribution model [37] to include a broader spectrum of disorders.Essential elements included making people feel understood, broadening the agenda, and negotiating an understanding of symptoms from a biopsychosocial perspective.In considering how this framework could be applied to NEAD, early clarification and information on the framework for diagnosis and treatment to support its' standardisation would be helpful.
Professional-led peer support groups are also recommended.This could build upon our previous recommendation in applying the reattribution model to NEAD.Participants in the current study experienced isolation and loneliness often in the post-diagnosis "limbo" while awaiting psychological intervention and named social support as a preference.It is reported [24] that people with NEAD found peer support helpful to their coping and understanding of NEAD.The benefits of peer support for people with related conditions has been demonstrated [38].We suggest that healthcare professionals with training and understanding in NEAD and FND could facilitate these peer-support groups so that patients could access the benefits of a peer-support group and access an informed healthcare professional which to address some of the participant's concerns including stigma, containment of uncertainty and support with living with NEAD as part of the multi-disciplinary management.

Limitations
This research aimed to explore the experience of people diagnosed with NEAD across the trajectory of the disorder.Although all participants were given clinical diagnoses of NEAD by experienced Consultant Neurologists, not all participants with diagnoses of NEAD had access to gold standard video telemetry epilepsy monitoring units, some had prolonged EEG and informal video recording.The ability to accurately distinguish between non-epileptic and epileptic seizures based on clinical signs remains challenging [44].Due to the qualitative methodological approach chosen to best address the question of participant's experience of living with NEAD, only a small sample size, without a control group were required for this analysis.Data detailing the time since diagnosis was not recorded and this may have lent nuance to the understanding to the experience of living with NEAD developed in the current research.Variance presented in the data across method of diagnosis, those with and without comorbid epilepsy, other psychiatric diagnoses and intervention history.Although this heterogeneity provided a richness to the data and reflects real world clinical experience, future research could explore these aspects to understand any potential relationships across the trajectory of experience of NEAD.Future research could focus on exploring the lived experience of those with NEAD and those with comorbid NEAD and epilepsy separately.A longitudinal qualitative design would support this.Eleven of the twelve participants were female; previous research [24] identified that males were underrepresented in the NEAD literature.Future research could focus on recruitment of male participants.

Conclusion
Twelve people diagnosed with NEAD were interviewed about their experiences across the trajectory from symptom onset through diagnosis to living with NEAD.Three themes were developed: mind-body (dis) connect, a stigmatised diagnosis, and a role for containment.A dualistic understanding of health underlined participants' experience across the disorder trajectory.This created the space for participants to experience NEAD as a stigmatised diagnosis.Participants' experience across the trajectory of NEAD within the healthcare system influenced their own understanding of and trust in their NEAD experience, how they shared this with others in their social and work lives and how the managed their NEAD symptoms on a daily basis.Participants managed many uncertainties across the trajectory of NEAD.For some, examples of timely diagnosis, clear explanation and collaborative healthcare management plans supported containment of these uncertainties.We recommend the consistent implementation of best-practice diagnostic and management framework [4], the provision of education to healthcare staff as standard clinical practice and the facilitation of professionally-led peer support groups.

Declaration of competing interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
"kind of lonely…they just said it wasn't epileptic seizures, we're not quite sure what it is… start to feel a bit kind of alone like, what's wrong with me?" (P9); "nobody was really sure… it was just all like, very murky water."(P11)