Epilepsy & Behavior 56 (2016) 5–14

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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh

Emotion and dissociative seizures: A phenomenological analysis of patients' perspectives Susannah Pick a, John D.C. Mellers b, Laura H. Goldstein a,⁎ a b

King's College London, Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience, De Crespigny Park, London SE5 8AF, UK Neuropsychiatry Department, Maudsley Hospital, South London and Maudsley NHS Foundation Trust, London SE5 8AZ, UK

a r t i c l e

i n f o

Article history: Received 6 November 2015 Revised 2 December 2015 Accepted 9 December 2015 Available online xxxx Keywords: Dissociative seizures Nonepileptic seizures Psychogenic seizures Emotion Qualitative Phenomenological

a b s t r a c t Quantitative research has indicated that patients with dissociative seizures (DS) show altered responses to emotional stimuli, in addition to considerable emotional distress and dysregulation. The present study sought to further explore emotional processes in this population, to extend previous findings, and to provide a phenomenological insight into patients' perspectives on these issues. Semistructured interviews were carried out with 15 patients with DS, and the principles of interpretative phenomenological analysis (IPA) were adopted in data analysis. Key themes elicited included: i) general emotional functioning; ii) adverse (stressful/traumatic) life experiences; iii) the role of emotions in DS; iv) relating to others; and v) resilience, protective factors, and coping mechanisms. The clinical and theoretical implications of the findings are discussed. © 2015 Elsevier Inc. All rights reserved.

1. Introduction Dissociative (nonepileptic, psychogenic) seizures (DS) are paroxysmal phenomena classified as a dissociative disorder in ICD-10 [1] and a conversion (somatic symptom) disorder in DSM-5 [2]. Dissociative seizures are superficially similar to epileptic seizures (ES) in many respects but tend not to exactly mimic the stereotypies of ES, often being of longer duration, with waxing-and-waning symptom severity and unusual configurations of symptoms [3,4]. Diagnostic investigations yielding an absence of epileptiform electrophysiological activity contiguous with seizure occurrence (i.e., video-encephalography: video-EEG) or a lack of significant neurological abnormalities characteristic of epilepsy are indicative of a DS diagnosis. Moreover, a diagnosis of DS requires the exclusion of any other potential underlying psychiatric or physical illness, such as psychosis, substance withdrawal, or transient ischemic attacks. Much of the previous psychological literature on DS has depended on quantitative data obtained through self-report measures (i.e., interviews, questionnaires) and clinical case note reviews. This literature Abbreviations: DS, dissociative seizures; ICD-10, International Classification of Diseases (10th ed); DSM-5, Diagnostic and Statistical Manual of Mental Disorders (5th ed); ES, epileptic seizures; IPA, Interpretative Phenomenological Analysis. ⁎ Corresponding author at: King's College London, Department of Psychology, PO77, Institute of Psychiatry, Psychology and Neuroscience, De Crespigny Park, London, UK. Tel.: +44 220 7848 0218. E-mail addresses: [email protected] (S. Pick), [email protected] (J.D.C. Mellers), [email protected] (L.H. Goldstein).

http://dx.doi.org/10.1016/j.yebeh.2015.12.010 1525-5050/© 2015 Elsevier Inc. All rights reserved.

has provided important insights into possible etiological factors in the disorder. Possible contributory factors include adverse life experiences (i.e., trauma, stress, relationship disturbances), dysfunctional personality profiles and coping techniques, subtle neurocognitive abnormalities, comorbid psychopathology, and frequent somatoform and psychological dissociative experiences [5–15]. However, an important limitation in the extensive use of quantitative methods is the lack of insight gained into the phenomenological experience of the patients and their important perspectives on the research questions under investigation. Qualitative techniques can be used to provide a richer understanding of the unique meanings that individuals ascribe to their experiences [16]. Increasing numbers of investigators have adopted qualitative techniques in studies of DS in the last decade. For example, several investigators have used semistructured interviews or linguistic analysis to examine patients' reactions to receiving the diagnosis [17–20]. These studies highlighted several themes in patients' responses to the diagnosis, particularly feelings of confusion about the nature of the disorder, relief, and feeling like a ‘normal’ person again (i.e., due to not having a chronic neurological condition). Issues relating to provision and patients' experiences of treatment have also been examined qualitatively [20–24]. Other authors have adopted qualitative techniques when investigating the experiences and understanding of patients with DS about their disorder. Carton et al. [17], for example, reported themes relating to patients' conceptualizations of their seizures. Some patients experienced their seizures as a release of accumulated emotion, stress, or as in some way related to previous traumatic experiences. In addition,

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many patients reported considerable negative consequences of DS on other areas of life, such as employment, self-esteem, social isolation, and anxiety. Furthermore, Dickinson et al. [25] used thematic content analysis to explore patients' perspectives on their disorder and noted that some patients linked their disorder to both early (e.g., head injury, physical assault, exposure to epilepsy) and recent (e.g., divorce, bereavement, legal proceedings) adverse life events. Others [26] noted that patients with DS tended to discuss the disorder dualistically as either organic or psychological, rather than acknowledging the possibility that psychological factors can interact with physical processes. Clearly, qualitative techniques have much to offer in enhancing our understanding of the experiences of individuals with DS and may also serve to generate hypotheses for further quantitative testing. Historically and contemporarily, abnormal emotional processes have been posited to play a crucial role in triggering or underlying DS [27–30]. Recent experimental research has yielded findings supportive of the hypothesis that patients with DS exhibit altered emotional functioning [31–34], including differences in attentional, behavioral, and subjective responses to affective stimuli. Moreover, patients with DS report altered emotional states prior to and/or during the seizures, such as autonomic arousal and/or panic symptoms [28,35,36], in addition to dissociative symptoms [35,36]. However, patients' perspectives on their emotional processing styles and responsivity have not yet been examined specifically with qualitative methods, neither have patients' reports of emotional experiences during their seizures. Qualitative investigation of emotional processes in this patient group is, therefore, an important supplement to quantitative studies in this area, as a means of providing a more detailed account of patients' experiences. This study sought to explore the following research questions, using qualitative methods: 1. How do patients with DS perceive their general emotional functioning? 2. To what extent can patients with DS reflect on and understand the possible role of emotions in the onset of the disorder and/or ongoing seizure generation? 3. How do patients with DS perceive their ability to recognize and understand the emotions of others?

2.2. Procedure The interviews lasted approximately 30 to 90 min. Fourteen interviews took place in a psychology laboratory, and one in the patient's home. The same interviewer (SP) carried out all interviews; at the time, a female postgraduate student with no personal experience of dissociative/conversion disorders but with a good knowledge of relevant empirical and theoretical literature. The interviews were recorded digitally, with patients' permission. The same interview schedule was used flexibly for all patients (Appendix 1). The questions focused on the following topics: general emotional functioning, responses to emotionally upsetting events/ situations, understanding of others' emotions, involvement of emotions at the time of initial seizure onset, involvement of emotions in ongoing seizure occurrence, peri-ictal emotions, and more general ideas about the links between DS and emotions. 2.3. Data analysis Interviews were transcribed verbatim, and the transcriptions were anonymized. In IPA, the analyst engages actively with the transcript and aims to interpret the meanings implicit in the data. The following steps were taken in analyzing the data: i) identification of themes in the first transcript, ii) theme connection within the first transcript, iii) adding additional transcripts to the analysis, and iv) developing the final classification scheme. More detail is provided in Supplementary File 1. During data analysis, notes were made when there was a possible influence of the analyst's background or characteristics on interpretation of the data; efforts were made to minimize the influence of such characteristics on the interpretations made. A second member of the research team (LG) examined a subsample of transcripts independently, blind to the themes that had been identified by the interviewer (SP). The themes identified by the second rater were very similar to those identified by the first; however, some small modifications were subsequently made to the hierarchy of themes where minor disparities had emerged. Furthermore, a preliminary summary of the main findings was sent to two patients who had participated in the study. One of the patients responded, confirming that the summary was understandable and acceptable and reflected her viewpoints on the topics discussed.

2. Materials and methods

3. Results

Semistructured interviews were conducted with a small sample of patients recently diagnosed with DS, prior to undergoing psychological therapy for the disorder. The research followed as closely as possible the recommendations made by proponents of IPA [37].

3.1. Participant characteristics

2.1. Participants

3.2. Overview of themes

Recruitment for the study took place between January 2011 and August 2012. Ethical approval was granted by the Joint South London and Maudsley and Institute of Psychiatry NHS Research Ethics Committee (reference 08/H0807/82). Eligibility criteria for inclusion in the study were: i) having received a diagnosis of DS based on video-EEG monitoring and/or consensus clinical opinion (the shared opinion of at least two consultant neuropsychiatrists, neurologists, or epileptologists), ii) being 18–65 years of age, iii) having an estimated intelligence quotient (IQ) of 70 or greater, iv) being fluent in English, and v) not having documented epilepsy, significant medical illness, current major depression, anxiety, substance dependence, or psychosis. All patients were recruited from tertiary referral neuropsychiatry services at the South London and Maudsley NHS Foundation Trust. Prior to participation, participants provided written informed consent.

Several superordinate themes emerged during the analysis, partially reflecting the topics covered in the interview schedule. These were themes relating to: i) general emotional functioning; ii) adverse (stressful/traumatic) life experiences; iii) the role of emotions in DS; iv) relating to others; and v) resilience, protective factors, and coping mechanisms. The themes and subthemes are presented with representative quotations in Tables 2 to 6.

Fifteen participants took part in the study. The demographic characteristics and duration of DS disorder for each participant are presented in Table 1.

3.3. General emotional functioning One cluster of themes was related to patients' perceptions of their general emotional functioning (Table 2). For some, the phenomena described seemed to represent long-term tendencies rooted in development. Other patients indicated that the experiences were more specific to a given time in their lives.

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Table 1 Participant characteristics. Participant number

Age

Gender (M/F)

Ethnic background

Occupational history

Educational background

Time since DS onset (months)

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

40s 40s 50s 30s 30s 50s 20s 30s 50s 30s 50s 30s 30s 20s 50s

F F F M F F F F F M M M M F F

White British White British White British White British White British Mixed Black African White British White British White British White British Mixed White British White British White British

Self-employed/homemaker Homemaker/professional Homemaker Professional Administration Professional Professional Homemaker Professional Intermediate occupation Unemployed/disability Intermediate occupation Service occupation Unemployed/disability Intermediate occupation

GCSEs/O levels Undergraduate degree None Postgraduate degree Undergraduate degree Postgraduate degree Postgraduate degree GCSEs/O levels Undergraduate degree GCSEs None Diploma None None GSCEs/O levels

48 84 120 33 192 84 84 120 44 15 276 168 192 120 30

M = male, F = female.

3.3.1. Negative affect The experience of aversive affective states was common to almost all patients. Patients often felt that this was exacerbated by, or a direct consequence of, the symptoms of DS or other somatic concerns (statement 1). Others described previous periods of depression in relation to stressful/traumatic life events or circumstances (statement 2). Some patients described a specific lack of positive affect that appeared to be relatively long-standing (statement 3).

3.3.2. Affect dysregulation Lability of mood state was also common, with patients describing extremes of emotion occurring within short periods of time (i.e., a day), labeled ‘ups and downs’ (statements 4–5). One patient felt that this tendency had worsened since the onset of DS. Discrete episodes of excessive emotional expression were also a commonality, including weeping, aggression, and destructive behaviors (statement 6–7). Some patients also recognized that they experienced difficulties in calming down once upset (statements 8–9), and that these patterns might be linked to the ongoing ‘bottling-up’ of their emotions.

voluntary control. For others, this tendency was described as being more of a controlled analysis of emotional episodes. 3.3.5. Emotions linked to physical feelings Many patients perceived strong interconnections between emotional states and physical experiences. For example, emotion was described as causing physical discomfort or pain, motor symptoms, and/ or tiredness/exhaustion (statements 19–21). Several patients also experienced sleep disturbances such as insomnia and night terrors as a result of stress or anxiety (statements 22–23), which were also linked to more general sleep problems in some cases (Section 3.4.4). Some patients were able to describe acute awareness of physiological changes (e.g., heat, shaking, heart-racing) during acute emotional arousal, particularly anger (statement 24). 3.4. Stressful/adverse life experiences or circumstances Patients reported a wide range of stressful and/or adverse events and circumstances (Table 3). 3.4.1. Relationship/interpersonal problems Some patients described current relationship problems, including conflict, intimate relationship breakdown, and difficulties in forming relationships with others (statements 25–26). Other patients referred to relationship problems that had affected them in the past (statements 27–28).

3.3.3. Inhibited experience and expression of negative affect A very common theme was the marked inhibition of the experience of negative emotion. This was referred to as ‘closing down’ or ‘shutting off’ unwanted feelings or mood states (statements 10–11). This theme was linked to another coping strategy involving behavioral/social ‘shutting down’ (see Section 3.7.3). Patients frequently talked of ‘bottling-up’ unpleasant emotions, that is, inhibiting expression of such emotions to others (statements 12–13). A related feature was that of ‘putting on a brave face’, presenting an artificially positive/confident persona to others, despite this being incongruent with internal affective states. This subtheme was connected to a belief that the expression of feelings and emotions might be a burden to others (see Section 3.6.3). Experiential or expressive emotional inhibition was often described as long-standing, and attributed to events/situations that had occurred during childhood/adolescence in some cases (statements 14–15). Some patients referred to a possible relationship between these tendencies and the occurrence of seizures, and/or indicated awareness of the maladaptive nature of these patterns (statements 16–17).

3.4.2. Abuse A recurrent theme was the experience of interpersonal abuse, often during childhood (statements 29–30). Some patients described having ‘locked away’, buried, or suppressed these experiences (statement 29). For some patients, abusive experiences had also occurred during adulthood (statements 31–32), including domestic abuse, physical assault, and workplace bullying.

3.3.4. Rumination Rumination about unpleasant emotions or upsetting experiences was commonly described (statement 18). For some, these ruminative thoughts were referred to as somewhat intrusive and not within

3.4.4. Somatic concerns and symptoms Almost all patients described additional somatic illness, symptoms, or concerns (statements 35–38). The most commonly reported were pain and sleep disturbances.

3.4.3. Generally stressful circumstances Some patients tended to describe their lives as generally stressful, and/or traumatic. For some, there was a chronic or long-term nature to the stressors, and often multiple stressors or traumas were reported (statements 33–34).

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Table 2 Themes relating to general emotional functioning. Theme

Subtheme

Typical statements

Negative affect

Current negative affect related to somatic symptoms (including DS) Previous depression related to difficult life events/circumstances Long-term lack of positive affect

Affect dysregulation

‘Ups and downs’

1. “I get…especially since all my health issues started, I get very depressed, due to all the things that are going on with me.” (P12) 2. “I used to be in huge emotional pain…my life was really hard emotionally…I went through a very difficult time, I was depressed…” (P6) 3. “I wouldn't say I've ever felt really happy…I wouldn't say, for the past like 15 or 20 years, I've been happy, I can't remember a time in my life…” (P7) 4. “My bad moods are…they're really bad…When I'm in a bad mood, I'm really unhappy. It's severe. When I'm in a good mood…nothing can go wrong.” (P14) 5. “…before my attacks, I was quite wavy anyway....as opposed to a calm sea…but since the attacks…my emotions have changed, are much more dramatic…the wavy lines are much higher and much lower, at either end of the spectrum…” (P1) 6. “I kind of, blow up at inappropriate things at home. Well not inappropriate, but really small things at home.” (P5) 7. “You know, it comes out of me…in a sense where, I'll smash a plate or a cup.” (P11) 8. “I'm not good at calming down. It takes me forever…when I hold things in, and think what I'm saying, and I have to hold back a little bit, that's when I can't calm down.” (P8) 9. “Once I cross the line, then it's avalanche…and I think that's because I bottle it all up…so, there is a line. The point of no return I suppose.” (P2) 10. “I have to accommodate certain negative influences, so I think they leave me flat, rather than down. Numb. Shutting it off. Like, blocking it.” (P2) 11. “I very much compartmentalise stuff…with very strong emotions, be it very good ones or very bad ones, I tend to close off from them…” (P4) 12. “Throughout my entire life and throughout any stresses and strains I've had, the way I've always dealt with it, is — the worse I'm actually feeling, the happier I will be to people around me. I hide my feelings very much so…I just, you know, put on this sort of happy face…” (P15) 13. “But even my best friends, you know, they've come to see me, so I don't have to be completely, you know ‘painted smile’, but there's still an element of that.” (P1) 14. “I think, one of the things about my family life, and my upbringing, was that very strong emotions are not ok, and they're not shown. Which I guess ties into the seizures in some way.” (P4) 15. “I feel myself, it's about how I was emotionally as a child…because I was very sensitive and the problems that I faced, I suppressed that. I forget about that for many many years. You know, it went out of my mind completely.” (P6) 16. “Sometimes…I want to hold things back…but I know, because of the seizures and everything, I know that's the worst thing you can do, to keep it all in to yourself. You've got to speak to someone about it.” (P8) 17. “So it was all about carrying on, covering up, not being able to say anything. Particularly in some very stressful situations…I know that was internalising the emotions, and…I know how it affected me too.” (P2) 18. “I have to keep processing it. I keep processing it, over and over and over…it's like a little nag, and it won't go away, no matter what I try to do, it won't go away. It's like I have to keep thinking about it…” (P9) 19. “I'm always getting the pain…it's just like all of the time, even for small things, if I get angry or something like that....it's just like very quick, and then I feel very tense....it can take days before the pain goes....” (P7) 20. “I get these jerks, you know, and I recognise if I'm feeling a bit anxious, it's like a build-up, and my body will jerk, and then the anxiety goes.” (P9) 21. “…if something's upset me…perhaps the day after, or the day after that, I will feel very exhausted… and you know, if I allow myself time enough, then it will make me feel physically not well…” (P15) 22. “If I'm upset I won't sleep…and then when I do sleep I have really strange weird dreams that are sort of connected to what I'm upset about…” (P5) 23. “I mean night-times, there's the night traumas, the nightmares, night sweats…there is a connection with the nightmares with the bullying.” (P13) 24. “Sometimes I get hot, and I tend to, it's sometimes like the anger is boiling up inside me, and my heart races a bit, if it's something really bad…If I get really angry, I shake, which is quite embarrassing.” (P5)

Episodic excessive emotional expression Difficulties calming down

Inhibited experience/expression of negative emotions

Shutting off difficult emotions

Bottling-up emotions and putting on a ‘brave face’

Inhibition of emotions rooted in development

Insights into links with seizures/negative consequences Rumination/intrusive thoughts Emotions and physical symptoms (non-DS)

Pain

Motor symptoms Exhaustion Sleep disturbance

Physiological responses to affective arousal P = participant number.

3.5. The role of emotions in DS Themes relating to the role of emotion in DS (Table 4) included the linkage of DS occurrence to life stressors/traumatic events, viewing DS as a release of emotion, and an inconsistent temporal relationship between emotional triggers and DS. Several patients described emotions/experiences that commonly occurred postictally.

3.5.1. DS onset linked to stress/trauma Stressful circumstances or elevated stress levels were often described as having occurred at onset of the disorder, or immediately preceding this (statements 39–48). Such experiences included medical/ somatic crises or procedures, traumatic life events (i.e., physical/sexual assault), and relationship breakdown or crises. Other stressors included moving home, occupational stress, bereavement, and physical/mental

exhaustion. Some patients described multiple life stressors occurring prior to DS onset. 3.5.2. DS as emotional ‘relief’ after a ‘build up’ Dissociative seizures were associated with switching off from emotional distress or strong emotions by several patients (statement 49). Some patients felt that their seizures had originally been triggered by a build-up of emotional distress (statement 50). Feelings of well-being or relief following a seizure were also described (statement 51). 3.5.3. Inconsistent emotional triggers for DS The relationship between DS occurrence and emotional states was perceived as unpredictable by the majority of patients (statement 52). One patient mentioned that her DS used to be preceded by fear consistently, but that now they seemed to be triggered by the experience of any strong emotion (statement 53).

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Table 3 Themes relating to adverse life experiences. Themes

Subtheme

Typical statements

Relationship/ interpersonal problems

Relationship dysfunction/ interpersonal problems (current) Relationship dysfunction (previous)

Abuse

Childhood abuse

25. “I know for example that there is an ongoing situation with me, where conversations are being misrepresented…and it feels terribly unjust and terribly unfair…and this has gone on for several years.” (P2) 26. “I find it hard to actually make friendships. I mean I try and get out there, around people, and I just can't do it.” (P13) 27. “…when my parents got divorced…it's quite a wounding thing…you know, I was very cross and very bitter, and I carried that for a long time.” (P1) 28. “…for the first five or maybe six years of my marriage, I cried constantly because it was so awful…it just destroyed me….” (P15) 29. “I think…when I was a child, I went through quite a bit of child abuse…and I think I locked that away, and I know because I just got on with it…my way was to kind of get on with it…I don't think on it at all, sometimes I'm kind of, not angry, I'll be upset that I had to suffer that, and now it's still affecting my adult life.” (P10) 30. “So, when she, when I was beaten, I hate her, I hate the pain, and I hate not being able to express my pain, my physical pain, my emotional pain, I hate not being able to cry, I thought that was, you know, pure cruelty.” (P6) 31. “…he'll shout and he'll scream, and throw things…last week I was making a drink and I'd got the boiling kettle in my hand…and he just walked up behind me and pushed me.” (P5) 32. “…and then the intimidation started and the mental bullying started…and that was it.” (P13) 33. “…currently my situation at the moment is quite stressful…” (P2) 34. “I've had so many things happen, to me, during my life…” (P1) 35. “Most days, I end up with a bad headache throughout the day…I've been to the neurologists and I've told them about it, and I've had brain scans, and they're just not finding anything.” (P13) 36. “I have pain all the time. Like in my leg, it's just like, all the time. Nobody can do anything about that…” (P7) 37. “I don't go more than probably three, three and a half hours a night…the mind's constantly active.” (P10) 38. “Sleep, that's the main thing at the moment....I keep waking up constantly, for no reason, and sometimes you think it's time to get up…and then I can't get back to sleep again.” (P8)

Adulthood abuse

Generally stressful circumstances Somatic symptoms and concerns

Pain

Sleep disturbance

P = participant number.

3.5.4. Postictal emotions/experiences A total lack of emotion was most often described during DS, during which patients reported not feeling anything at all. On the other hand,

emotional reactions and experiences after DS were more common (statements 54–56), including frustration, tiredness, and weeping, but also relief in some cases (see Section 3.5.2).

Table 4 Themes relating to the role of emotions in DS. Theme

Subtheme

Typical statements

DS onset linked to stressful/ traumatic life events

Medical/somatic crises

39. “…they followed a long period of intense physical pain. The pain came first, the attacks came after.” (P2) 40. “I had to go into hospital for minor surgery, I had general anaesthetic, I came out of the anaesthetic, and ended up staying in for a week…they hadn't a clue what it was, and it kind of all went from there…” (P1) 41. “I got sick, and I was told I had meningitis…and so, they started around then....” (P5) 42. “In 2004 I had a major physical failure. I had the seizures, I had the stomach, I had to have surgery, I had breast cysts, I had cysts on my uterus….” (P6) 43. “I'd been attacked, shortly before that…” (P5) 44. “I was ok-ish then. I just went out for that walk…got beaten up…it all stemmed from there…” (P11) 45. “Prior to all that, I lost my wife, my daughter, er, I gave up the alcohol…yeah so I was sort of, I'd had a few sad moments, bereavements, before the actual…erm, the first seizure.” (P11) 46. “I had a lot going on…moving home, getting married, and all that sort of thing, so…it was stressful, at that time.” (P8) 47. “For me, they came at a time when my body was under a huge amount of strain from stress, and also I ran the marathon…my relationship broke down in the March, I ran the (marathon) in the April, and I was scheduled for the surgery in June…physically, there was a lot of stuff going on…”(P4) 48. “I can remember my first day, my first seizure started…the problem I was facing at home had just got to a point where I just couldn't deal with it any more…I got to my limit…something had to give, and for me, it obviously manifested in a seizure.” (P15) 49. “So it would seem like to have a seizure would take me out of my surrounding problems…Switched off, emotionally switched off, I don't feel anything…I don't feel unhappy or I don't feel happy, I just feel as though somebody has literally switched me off and I'm not worried about anything.” (P15) 50. “…if you don't get things off your chest, and you're holding certain things back, that keeps running round in your mind, then that is like stressing you out, then it's building up and making you more and more agitated, and I think that's possibly one of the causes that triggered it off.” (P8) 51. “I used to feel exhausted (after a seizure), but it was almost like all that fear had gone, almost like a relief feeling, funnily enough, that it had gone.” (P9) 52. “At times when I'm stressed and fairly anxious I can have lots of seizures, but then at the same time I can have none at all…” (P12) 53. “…before, I'd always feel like fear. I was just like really scared…now, I just feel like every kind of big emotion, just triggers it, that's the thing.” (P7) 54. “So…they bring on a completely different emotion of ‘Oh god, it's happened again’ and ‘I haven't done this and I haven't done that’…there can be a feeling of that, after one, which is ‘Oh god, here we go, another day lost, another day wasted.’” (P2) 55. “I feel very very tired, and sort of like, more worn out, then I was before…” (P11) 56. “When I come out of it, all I want to do is cry, and that's it…I'm always crying after them, I'm just not myself, if you know what I mean?” (P14)

Physical/sexual assault Multiple stressors

Relationship crises

DS as emotional ‘relief’ or ‘shut-down’

DS related to switching off from emotions DS originally triggered by a build-up of emotion/stress Relief after DS

Inconsistent relationship between emotional triggers and DS occurrence Postictal emotions/experiences

Frustration

Tiredness/exhaustion Weeping P = participant number.

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Table 5 Themes about relating to others. Theme

Subthemes

Typical statements

Interpersonal sensitivity

Interpersonal sensitivity as positive Interpersonal sensitivity as negative

57. “I'm very sensitive to other people's feelings, and I have a lot of empathy.” (P6)

Caring for and supporting others Fear of burdening others

58. “I'm going back to what I said about being sensitive to people, I just wish I didn't do that, I just wish I didn't understand it so well. Because sometimes, you just don't want to know…” (P2) 59. “I remember when I was younger…I was very susceptible to other people's emotions…I think having a fairly volatile home-life makes you that way. You're consciously looking out for stuff.” (P4) 60. “I've never had no-one look after me, I've always looked after other people….but it's not like that now.” (P3) 61. “I think I have this thing where…in work…most people will come to me…I'm like an agony aunt. Which is ironic…” (P7) 62. “I don't want to burden anybody else with it…I don't want to burden anybody else with what I've been feeling.” (P3) 63. “I tend to refuse people's help, I tend to not want to take anything.” (P2)

P = participant number.

3.6. Relating to others Relationships with others were discussed frequently by patients (Table 5).

3.6.1. Interpersonal sensitivity Most patients reported being sensitive to other people's mental states. Some viewed this as a positive trait (statement 57). However, some suggested that it could, at times, lead to misinterpreting social signals, or that it might be better not to be so aware of others' mental states/emotions (statement 58). Some patients linked their interpersonal sensitivity to developmental experiences (statement 59).

3.6.2. Caring for and supporting others Patients described being caring and supportive of other people. Several patients reported being the person that ‘people come to with their problems’, despite rarely sharing their own concerns and issues (statements 60–61).

3.6.3. Being a burden to others Several patients described their emotions or seizures as a possible burden on others, and clearly avoided disclosing their difficulties (e.g., statements 62–63). This was also connected to a need for independence and control, and viewing themselves as strong and resilient (see Section 3.7). 3.7. Resilience, protective factors, and coping strategies A range of factors were discussed that were perceived as being positive in patients' functioning or that facilitated coping with their difficulties (Table 6). 3.7.1. Resilience Several patients described themselves as being emotionally ‘strong’, a ‘fighter’, tough, and able to cope with adversity (statements 64–65). Moreover, some perceived themselves as positive/optimistic, with a ‘glass half full’ outlook on life (statements 66–67). Several patients referred to a high need for control and independence, and found that

Table 6 Themes relating to resilience, protective factors, and coping. Theme

Subtheme

Typical statements

Resilience

Emotional strength

64. “I had to toughen up, to be strong…so I was a fighter, I fight for things that I want…” (P6) 65. “I've always been able to cope with everything… because if you don't help yourself, nobody will help you…” (P3) 66. “I think I'm quite a positive person. I always look, I look positively on anything, I try to be optimistic, no matter what comes my way…” (P15) 67. “I've always been more of a glass half full than glass half empty person....” (P9) 68. “…I was, I did everything. I was in charge and that was it, full stop. But now, I've lost it, I just haven't got the confidence I had…With the seizures, since I've been having these turns…I was always independent, always. But I've lost it…I can't cope with this, because it's not me, I'm not in control, and I don't like that.” (P3) 69. “I know, even on my worst days, that fundamentally I am actually really lucky, and I'm actually very happy…I know that I'm lucky with my lot, and everything I've got in my world, my family, my friends, and everything…” (P1) 70. “I did excellently at school, I made sure I did excellently at college, I did excellently in jobs…” (P2) 71. “…sometimes I just think ok yeah, stop complaining…you can have a job, some people don't have jobs, they don't have qualifications, or they are very sick and things like that.” (P7) 72. “…it's the one place that I always feel that I can be myself, but even if I don't feel well, if I go into (work), then I immediately feel well, because it's like a feel-good factor.” (P15) 73. “I've had to sort of force myself to get out of the depressions and try to find things to do to take my mind off it.…anything to take my mind off it.” (P12) 74. “I might go over the beach for a while…that's nice, it helps, it don't get me completely calm, but it's a nice relaxing atmosphere and that's what I try and do, I try and put myself in a situation where I go and do something relaxing, and try and calm down.” (P13) 75. “…when I was young I did a lot of martial arts, so I learned how to do meditation and breathing exercises and things, and I use them now.” (P12) 76. “So I kind of withdraw, I don't phone call, I don't pick up my phone, I don't go out, I just stay in my room…it can go on for days…I tend to…shut down.” (P7) 77. “…sometimes I have a tendency to shut down. You know, erm, switch off….you know, me mobile phone, and not answer the door…. I mean, shut off from society, you know, where I won't come out, you know I'll I stay in…this is how I find my way of dealing with it.” (P11)

Positivity

Control

Protective factors

Supportive relationships Educational/occupational achievements Work

Coping strategies

Distraction and relaxation

Behavioral/social avoidance (‘shutting down’)

P = participant number.

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the occurrence of DS had significantly reduced their experience of confidence and autonomy in this regard (statement 68). 3.7.2. Protective factors A range of protective factors were mentioned. Spouses, family members, and friends were often discussed in positive terms, as sources of support and encouragement (statement 69). Additionally, some patients described academic and occupational success (statements 70–71). For some patients, work provided a relief from difficult life circumstances or emotions (statement 72). 3.7.3. Coping strategies The use of coping strategies was evident in most of the sample. These strategies most commonly involved attentional and behavioral distraction techniques, in addition to relaxation strategies such as meditation, martial arts, and enjoyment of music or nature (statements 73–75). A common, but less adaptive, strategy was self-isolation and behavioral avoidance of social situations during times of acute emotional distress (statements 76–77), labeled ‘shutting down’ by several patients. 4. Discussion The aim of the study was to gain further insight into the emotional experiences of patients with DS, and how patients perceive their emotions relate to the onset and recurrence of their seizures. It was hoped that examining these issues qualitatively would enrich and extend previous quantitative findings suggestive of aberrant emotional processing in this population. It is known that patients with DS often present with significant emotional distress (e.g., depression, anxiety) and emotional dysregulation [9,38]. The current study suggests that the frequent experience of negative affect and mood state oscillation are a cause of distress and reduced quality of life in this group. This finding concurs with quantitative studies [39,40]. In the present study, several patients directly attributed their emotional difficulties to the occurrence of DS, or felt that DS at least exacerbated these problems. Furthermore, the described episodes of excessive emotional expression seemed to occur when patients' perceived ability to cope with their emotions had reached a limit (i.e., when ‘things had gotten too much’). It may be informative to consider whether DS serve a similar function to these episodic losses in emotional control, as another response to stress or negative affect reaching a threshold, as proposed by some authors [29]. It is particularly interesting that the above emotional difficulties were described alongside a general tendency to exert excessive control over the experience and/or expression of negative emotion. Phenomena described within this theme can accurately be summed up by the two phrases ‘shutting down’ negative emotions and ‘putting on a brave face’. The reported tendency towards inhibited experience of negative emotion could be conceptualized as a dissociative mechanism (e.g., emotional constriction, depersonalization), particularly in those patients who experienced this as relatively automatic and involuntary. For these patients, this type of detachment response seemed to have developed into a habitual tendency, similar to that seen in depersonalization disorder, for example. The observed pattern has also been reported quantitatively [40]. These tendencies could possibly have developed in the context of early life stressors such as traumatic experiences, family dysfunction, and/or parental modeling of excessive emotional control and inhibition, as suggested by patients' reflections. Some patients also avoided expressing genuine emotions to others, and/or referred to displaying an overtly positive façade even when this was incongruent with their internal emotional state. For some, this was a voluntary coping strategy, and seemed to represent intentional cognitive avoidance of some emotions, linked to beliefs regarding the necessity for complete independence, autonomy, personal control, and ‘emotional strength’. These general patterns accord with the quantitative findings [41], where patients with DS reported exerting greater

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control over emotional expression and more negative beliefs about emotions (e.g., shameful, irrational, useless), relative to healthy controls. Novakova et al. [40] also observed significantly higher scores for selfreported emotion suppression and avoidance in their sample of patients with DS, compared with nonclinical controls. Together, the findings indicate the presence of maladaptive beliefs about emotional functioning, alongside a tendency to avoid, inhibit, or ‘mask’ the experience/ expression of negative affect. Cognitive therapies for DS might seek to focus on such beliefs, and associated schemas. The strong links between emotions and bodily experiences described by many patients also suggested that negative affect was associated with an exaggerated focus on somatic symptoms and experiences, in this sample. This is in line with the previous findings that have shown high levels of somatic symptoms and somatoform dissociation in patients with DS [12,42–45]. It seems, then, that difficult emotions may manifest as a variety of somatic symptoms in individuals with this diagnosis. The specific mechanisms by which emotion may give rise to somatoform symptoms is a fascinating and important area for further neurobiological studies [46,47], but the currently available literature indicates possible abnormalities in functioning and connectivity between neural regions involved in emotion, agency, motor control, and attention/awareness [48–51]. The themes pertaining to stressful and traumatic life events, once again, generally reflected and extended the findings of previous studies [52,53]. The qualitative findings described here confirm that patients with DS experience a wide range of adverse life events. Abuse (physical, emotional, sexual) was disclosed by several patients, further suggesting the etiological importance of these types of experiences in DS. Several patients described ‘locking these experiences away’ or suppressing them, which indicates that the trauma and psychological consequences may not have been fully processed. Again, this shows considerable insight into mechanisms that can be conceptualized as dissociative (i.e., fractionation of autobiographical memories and emotions relating to traumatic life events). These findings are suggestive of a complex and unresolved response to traumatic experiences that may contribute significantly to the development of DS, and corresponds with observations of high rates of posttraumatic stress disorder and associated symptoms in this patient group [52]. These findings are also indicative of the potential importance of identifying and addressing traumatic experiences in clinical interventions for some patients with DS, perhaps utilizing techniques aimed at emotional processing of the index trauma. However, the currently available literature indicates that while trauma/abuse are significant risk factors for the later development of DS, these experiences are reported by only a proportion of patients with the diagnosis and so seem to represent just one of many life events that might predispose towards the condition in individuals with possible additional cognitive and emotional vulnerabilities. Relationship disturbances were also clearly present for many patients, particularly involving problems with significant others that appeared longstanding and difficult to resolve. Family and relationship dysfunction has been reported in this group in studies utilizing other methodologies [8,15,53–55]. Several patients described dysfunctional family dynamics in childhood, and relationship crises occurred immediately prior to DS onset in several cases. Therefore, significant relationship difficulties may act as predisposing, precipitating, or perpetuating factors for DS, and are suggestive of the possible benefits of including significant others within psychological interventions for the disorder. Addressing current relationship dysfunction might either take place within CBT protocols or other approaches such as systemic family interventions or interpersonal psychotherapy. However, it should be noted that there is currently a paucity of controlled studies investigating the efficacy of the latter two approaches in this population, so this is a potentially valuable avenue for further research. While many patients found it difficult to understand the processes by which stressors might have brought about the initial onset of DS,

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some patients seemed to have a better understanding of how emotional states might contribute to the ongoing occurrence of DS. The theme of DS being a form of emotional release or ‘shut-down’ following a build-up of emotion was reminiscent of those previously reported in other qualitative studies [17,20]. Together, this lends support to the proposal that DS are dissociative phenomena. Hendrickson et al. [35,36] have also reported elevated dissociative experiences during seizures in patients with DS. Moreover, Stone and Carson [56] report a series of cases with DS who described ‘wilful submission’ to seizure onset, akin to voluntarily dissociating from the present situation or mental state. The inconsistency with which DS were associated with particular emotional states indicates that, if triggered by emotion, the relationship is not specific to any one emotional state. A recent study [35], nevertheless, reported that peri-ictal emotions were more commonly reported in patients with DS than in those with ES. As many patients presently described DS occurring during times of relative happiness or relaxation, it might be that the emotional ‘shut-down’ or ‘release’ does not necessarily occur in direct response to one emotional episode, but might well occur after a gradual build-up, when the individual is in a ‘safer’ situation for the seizure to occur. It is also possible that seizures might be triggered by emotions taking place at a preconscious level, triggered by previously neutral cues that have been associated with trauma-related affect [28]. The lack of consistency between conscious emotion and seizure occurrence most likely underlies the perceived unpredictability of the seizures and may make attempts at control or prevention more difficult. Identifying possible preconscious triggers and/or patterns in accumulating distress may well be beneficial in increasing patients' ability to predict and/or control the occurrence of their seizures. Patients who identify stress as a precipitant for their seizures, for example, report being better able to predict their seizures, relative to patients who do not report stress as a precipitant [57]. The finding that patients generally described sensitivity to others' emotional states was noteworthy, in light of previous research. Patients reported being very much aware of and responsive to others' emotions and some described this as having a negative impact on their functioning. This accords well with findings [31] that patients with DS show exaggerated preconscious vigilance for outward signs of others' emotional states (i.e., from facial expressions). Moreover, other studies have indicated that experimentally presented facial emotional expressions lead to higher levels of cognitive interference in patients with DS compared with controls [33,58]. The findings described here suggest that at least some patients are aware of this tendency and so it may not be operating entirely outside conscious awareness. Patients often referred to their resilient personality traits, which suggested that they perceived themselves as proficient in coping with adversity. This seemed to be closely associated with the high levels of control and independence preferred by these patients, and the ability to exert high levels of regulation over their emotions. It is possible that an exaggerated emphasis on being resilient in the face of adversity and maintaining a relatively positive perspective may be crucially linked with the tendency to not tolerate the experience or expression of negative affect. Therefore, these beliefs and expectations could be an important mediator of the relationship between traumatic/stressful life events and the development of somatoform/dissociative symptoms, including DS. Put simply, patients' psychological resistance to processing and expressing trauma- or stress-related negative affect (i.e., the belief that acknowledging negative affect or accepting support is a weakness) could directly increase the tendency towards dissociation (psychological/ somatoform) and thus, the development of DS or other medically unexplained symptoms/functional neurological symptoms. The common reports of behavioral/social avoidance as a coping strategy indicated that some patients manage their difficulties in ways that could be detrimental to their general functioning. The excessive use of behavioral avoidance reported presently, for some, included prolonged periods of self-imposed isolation, which would necessarily

lead to reduced socialization and physical exercise, among other consequences. Once again, though, these reports are in accordance with previous literature which has indicated a tendency towards avoidant coping in this group [7,10,14,59]. These findings suggest that this is an important area for clinical intervention, perhaps as one element within cognitive behavioral approaches to treating the disorder [60]. Finally, the presence of protective factors (e.g., supportive relationships, education, employment) seemed to limit the impact of DS for some patients. Indeed, findings have previously shown that outcomes tend to be better for patients with DS who are in employment [61], those with more years of education [62], and those who are accompanied by a supportive other to their first clinic appointment [63]. It is possible that for patients out of employment or with less education or fewer positive social contacts, social interventions aimed at the development of occupational, educational, and interpersonal skills might provide considerable benefits. 4.1. Limitations It is possible that some of the phenomena described here may not be specific to individuals with DS and might be present in other clinical disorders. The current study aimed to provide an in-depth phenomenological exploration of emotional processes in patients with DS only; however, future studies may seek to explore differences and similarities between patients with DS and other functional neurological disorders, for example. Another comparison group might include those diagnosed with epilepsy, to examine whether such individuals understand the role of emotions in their seizures differently to those with a diagnosis of DS. Furthermore, the current study aimed to identify themes that were common to most/all patients in the sample, thereby representing patients with DS more generally. Additional studies might provide comparisons of the perspectives of subgroups of patients with DS, such as those with higher and lower educational achievements, varying levels of social support, an absence versus presence of psychological trauma (e.g., abuse), and/or those with chronic versus recent-onset DS. As previously discussed, the key goal of this study was to explore patients' understandings of their emotional functioning, rather than to specifically assess causal relationships or disorder-specific phenomena. The current study, therefore, utilized a narrative phenomenological approach to exploring the role of emotions in DS, with the central objective being to better understand patients' unique subjective emotional experiences. While the study identified several factors that patients viewed as important sources of distress and/or of possible relevance to the onset/occurrence of their seizures, the study did not include manipulation of variables under controlled conditions, so it is important to note that causal relationships between specific etiological factors (e.g., somatoform symptoms, trauma/abuse) and DS occurrence/ diagnosis are not supported by the current study. Instead, the findings here provide an indication as to which symptoms and life experiences are perceived as most important from the patients' perspective only. Quantitative studies including experimental and/or between-group designs are better suited to the elucidation of causal relationships. Another possible limitation is that this study aimed to examine patients' subjective experiences of the links between emotions and DS. According to most theoretical models of the disorder, the mechanism underlying this relationship is likely to occur below the level of conscious awareness. Therefore, it could be argued that an attempt to examine patients' conscious access to these processes is unlikely to be informative. However, the study has shown that this sample of patients with DS were able to reflect on their general emotional functioning and processing styles, which in itself provides important insights into possible etiological processes. Moreover, several patients were able to formulate a possible mechanism by which their emotions might be linked to their DS, in the form of an emotional release or shutdown. Therefore, it seems that at least some patients with DS are able to demonstrate insight into a possible emotional mechanism underlying their seizures.

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It should be noted, however, that an important possible influence on patients' responses in this study was any formulation provided by the participants' clinicians. All patients included in the sample had received a diagnosis of DS, and are likely to have received verbal and/or written explanations as to how the seizures might be related to psychological factors. In addition, some patients may have been directed towards internet-based resources for individuals with functional neurological symptoms. It is not possible to conclude, therefore, that the views expressed by patients in this study had not been in some way influenced by a clinician's or other experts' theoretical viewpoints. Nevertheless, one of the exclusion criteria for the study was having completed psychological interventions for DS. Therefore, it can be assumed that none of the patients had experienced extensive therapeutic input that focused on seizure- or emotion-related beliefs or processes. It is also important to note that within IPA, the investigator actively interprets the data provided by participants and as such, this interpretation may be, in some ways, biased by the sociocultural and professional background of that investigator. Indeed, while efforts were made to ‘bracket’ such influences when interpreting patients' responses, bias cannot be excluded. Nevertheless, every effort was made to ‘stay close to the data’ and avoid making significant theoretical assumptions that were not consistently supported by patients' statements. 5. Conclusions Patients with DS appeared to have considerable insight into their emotional functioning and how their life events and emotional responses might relate to ongoing seizure occurrence. Almost all patients taking part in this study could identify life events that may have contributed towards the initial onset of DS, although understanding of the processes underlying this relationship was limited. The findings indicated that the experience of considerable emotional distress and dysregulation was often long-standing, as well as exacerbated by the development of DS. Despite these difficulties, patients were generally aware of others' emotions and needs, and invested effort in caring for and supporting others. However, there was a clear tendency for patients to place high value on emotional resilience, control, and independence, and to exert excessive levels of control over the experience and expression of negative emotions. This excessive emotional control can be conceptualized as dissociation (involuntary, automatic) or cognitive avoidance (intentional, controlled) of negative affect, and it could contribute to intermittent episodes of excessive emotional dysregulation. Indeed, DS may represent a consequence of this unprocessed and ‘bottled up’ negative affect, allowing the individual to release or ‘shut-off’ from the resultant emotional experience. Future research might seek to explore further some of these hypotheses with experimental or self-report measures. The findings of the study have a number of clinical implications, which if applied in practice, could allow interventions to target specific emotionrelated processes in this group (e.g., emotion regulation, maladaptive emotion-related beliefs), in addition to seizure-related cognitions. Supplementary data to this article can be found online at http://dx. doi.org/10.1016/j.yebeh.2015.12.010. Acknowledgments We wish to thank all patients who completed the study. The research was funded by a postgraduate studentship awarded to SP from the Department of Psychology, Institute of Psychiatry, Psychology and Neuroscience (King's College London), and a grant from the Central Research Fund (University of London). This paper also represents independent research part-funded (LHG) by the National Institute for Health Research (NIHR) Dementia Biomedical Research Unit at South London and Maudsley NHS Foundation Trust and King's College London. LHG and JDCM are in receipt of further funding from the NIHR. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

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Conflict of interest The authors have no conflict of interest to declare. Appendix 1. Semistructured interview schedule • Can you describe to me, in general terms, what sort of a person you are emotionally? Prompts: – Do your emotions/feelings change much over time? – Do you ever try to change your feelings? – Would you say that you generally experience more positive or negative emotions, or roughly the same amount of each? – Do your emotions ever affect aspects of your life? (e.g., your relationships, work/college) – Do you find it easy to name or label what you are currently feeling? • How do you tend to respond when you are faced with an emotionally upsetting event or situation? Prompts: – For example, if somebody does something to upset or anger you? – Do you always know straight away when something has upset you? – Do you experience any physical changes when you are upset emotionally? – Do you tend to express your feelings? – Do you find it easy to calm down, once you are upset? • How easy do you find it to understand other people's emotional responses to things (feelings)? Prompts: – Can you usually tell if somebody is upset, happy, sad, angry, etc? – If someone is upset or angry, can you generally understand why they may feel that way? – Do you ever feel confused by other people's reactions to things? • Do you feel that your emotions/feelings were involved when your seizures/attacks started? Prompts: – If yes, can you give me any ideas about what sort of events or experiences were most important in this? – If no, what are your views on the reasons for why you started to have your seizures? • In your view, are emotions/stress involved in the fact that you are having your seizures? Prompts: – If so, can you describe how you think this may be happening? – Do you feel that you have any control over this? – If emotions and stress are not reasons why you have seizures, why do you think that you are having seizures? • During, just before, or straight after your seizures, can you tell me if you regularly experience any specific emotions (have any particular feelings)? Prompts: – E.g., joy, anger, or fear – Do you experience a sudden shift in the strength of your feelings/ emotions? • Do you think that Dissociative Seizures are related to emotions/stress in general? Prompts: – E.g., in other people • Is there anything else that you would like to tell me about your emotions and feelings? Particularly in relation to your diagnosis and experience of DS.

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