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REVISION
Final version published online: 19-JAN-2016 Full bibliographic
details: Epilepsy & Behavior (2016), pp. 5-14 DOI information:
10.1016/j.yebeh.2015.12.010
Emotion and dissociative seizures: a phenomenological analysis
of patients’ perspectives
Susannah Pick a , John D.C. Mellers b , & Laura H. Goldstein a,*
a. King’s College London, Department of Psychology, Institute of
Psychiatry, Psychology and Neuroscience, De Crespigny Park, London SE5
8AF, United Kingdom. (emails: [email protected];
b. Neuropsychiatry Department, Maudsley Hospital, South London and
Maudsley NHS Foundation Trust, London SE5 8AZ, United Kingdom. (email
*Correspondence to: Prof Laura H Goldstein. King’s College London,
Department of Psychology, PO77, Institute of Psychiatry, Psychology and
Neuroscience, De Crespigny Park London, UK, tel ++44 220 7848 0218.
Email: [email protected]
Abstract
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 provide a phenomenological insight into
patients’ perspectives on these issues. Semi-structured 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.
Key words: dissociative seizures, non-epileptic seizures, psychogenic
seizures, emotion, qualitative, phenomenological
1. Introduction
Dissociative (non-epileptic, 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]. DS 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 ischaemic 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 has
provided important insights into possible aetiological 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 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
the phenomenological experience of the patients, and their important
perspectives on the research questions under investigation.
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
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 semi-structured 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 DS
patients’ experiences and understanding of their disorder. Carton et al.
[17] , for example, reported themes relating to patients’
conceptualisations 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, many of the
sample reported considerable negative consequences of DS on other
areas of life, such as employment, self-esteem, social isolation and
anxiety. Furthermore, Dickinson and colleagues [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
6
that DS patients 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, behavioural 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:
7
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 recognise and
understand the emotions of others?
2. Materials and methods
Semi-structured 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].
2.1. Participants
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
8
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.
2.2. Procedure
The interviews lasted approximately 30 to 90 minutes. 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
anonymised. In IPA, the analyst engages actively with the transcript and
9
aims to interpret the meanings implicit in the data. The following steps
were taken in analysing 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 minimise 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, acceptable
and reflected her viewpoints on the topics discussed.
3. Results
3.1. Participant characteristics
10
Fifteen participants took part in the study. The demographic
characteristics and duration of DS disorder for each participant are
presented in Table 1.
Table 1 near here
3.2. Overview of themes
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.
3.3. General emotional functioning
One cluster of themes 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.
Table 2 near here
3.3.1. Negative affect
11
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),
labelled ‘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 behaviours (statement 6-7). Some
patients also recognised 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.
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 behavioural/social ‘shutting
down’ (see section 3.7.3). Patients frequently talked of “bottling-up”
12
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 sub-
theme 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).
3.3.4. 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 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
13
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).
Table 3 near here
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).
3.4.2. 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
14
adulthood (statements 31-32), including domestic abuse, physical assault,
and workplace bullying.
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).
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.
3.5. 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 post-ictally.
Table 4 near here
3.5.1. DS onset linked to stress / trauma
15
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’
DS 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).
3.5.4. Post-ictal emotions / experiences
16
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, weeping, but also
relief in some cases (see section 3.5.2).
3.6. Relating to others
Relationships with others were discussed frequently by patients (Table 5).
Table 5 near here
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).
17
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).
Table 6 near here
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 in, and found that the occurrence
of DS had significantly reduced their experience of confidence and
autonomy in this regard (statement 68).
3.7.2. Protective factors
18
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 behavioural
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
behavioural avoidance of social situations during times of acute emotional
distress (statements 76-77), labelled ‘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
to 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.
19
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 may 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 conceptualised as a dissociative mechanism (e.g. emotional
constriction, depersonalisation), 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
20
tendency, similar to that seen in depersonalisation 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 modelling 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 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 self-reported emotion
suppression and avoidance in their sample of patients with DS, compared
to non-clinical 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.
21
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 aetiological importance of these types of experience 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 conceptualised as dissociative (i.e. fractionation
22
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
post-traumatic 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 utilising techniques
aimed at emotional processing of the index trauma. However, the
currently available literature indicates that whilst 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 utilising 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
23
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 of the efficacy of the latter two approaches in
this population, so this is a potentially valuable avenue for further
research.
Whilst many patients found it difficult to understand the processes by
which stressors might have brought about the initial onset of DS, 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 DS cases 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
24
not specific to any one emotional state. A recent study [35], nevertheless,
reported that peri-ictal emotions were more commonly reported in DS
patients 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 also 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.
25
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 to
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 to 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
26
development of DS or other medically unexplained symptoms / functional
neurological symptoms.
The common reports of behavioural/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
behavioural avoidance reported presently, for some, included prolonged
periods of self-imposed isolation, which would necessarily lead to reduced
socialisation, 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 behavioural
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, with less education or fewer positive social
contacts, social interventions aimed at the development of occupational,
educational and interpersonal skills might provide considerable benefits.
27
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 achievement, 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, utilised a narrative phenomenological
approach to exploring the role of emotions in DS, with the central
28
objective being to better understand patients’ unique subjective
emotional experiences. Whilst 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 aetiological
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 aetiological
processes. Moreover, several patients were able to formulate a possible
mechanism by which their emotions might be linked to their DS, in the
29
form of an emotional release or shut-down. Therefore, it seems that at
least some patients with DS are able to demonstrate insight into a
possible emotional mechanism underlying their seizures.
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 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, whilst efforts were
made to ‘bracket’ such influences when interpreting patients’ responses,
bias cannot be excluded. Nevertheless, every effort was made to ‘stay
30
close to the data’ and avoid making significant theoretical assumptions
that were not consistently supported by patients’ statements.
5. Conclusions
Patients with DS appear 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 the experience of
considerable emotional distress and dysregulation that was often long-
standing, but also 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 conceptualised 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
31
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 emotion-related processes in
this group (e.g. emotion regulation, maladaptive emotion-related beliefs),
in addition to seizure-related cognitions.
32
Appendix 1 – Semi-structured interview schedule
33
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?
Acknowledgements
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.
Conflict of interest: The authors have no conflict of interest to declare.
Supplementary information
Supplementary file 1 – Further details on data analysis
34
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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 40s
F White British
Self-employed/homemaker
GCSEs / O levels
48
2 40s
F White British
Homemaker/professional
Undergraduate degree
84
3 50s
F White British
Homemaker None 120
4 30s
M White British
Professional Postgraduate degree
33
5 30s
F White British
Administration Undergraduate degree
192
6 50s
F Mixed Professional Postgraduate degree
84
7 20s
F Black African
Professional Postgraduate degree
84
8 30s
F White British
Homemaker GCSEs / O levels
120
9 50s
F White British
Professional Undergraduate degree
44
10 30s
M White British
Intermediate occupation
GCSEs 15
11 50s
M White British
Unemployed/disability
None 276
12 30s
M Mixed Intermediate occupation
Diploma 168
13 30 M White Service None 192
41
s British occupation14 20
sF White
BritishUnemployed/disability
None 120
15 50s
F White British
Intermediate occupation
GSCEs / O levels
30
M = male; F = female
42
Table 2. Themes relating to general emotional functioning
Theme Sub-theme Typical statementsNegative affect Current negative
affect related to somatic symptoms (including DS)
Previous depression related to difficult life events / circumstances
Long-term lack of positive affect
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)
Affect dysregulation ‘Ups and downs’ 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)
43
Episodic excessive emotional expression
Difficulties calming down
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)
Inhibited experience / expression of negative emotions
Shutting off difficult emotions
Bottling-up emotions and putting on a ‘brave face’
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)
44
Inhibition of emotions rooted in development
Insights into links with seizures / negative consequences
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)
Rumination / intrusive thoughts
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)
Emotions and Pain 19. “I’m always getting the pain…it’s just like all of the time, even
45
physical symptoms (non-DS)
Motor symptoms
Exhaustion
Sleep disturbance
Physiological responses to affective arousal
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)
P = participant number
46
47
Table 3. Themes relating to adverse life experiences
Themes Sub-theme Typical statementsRelationship / interpersonal problems
Relationship dysfunction / interpersonal problems (current)
Relationship dysfunction (previous)
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)
Abuse Childhood abuse 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
48
Adulthood abuse 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)
Generally stressful circumstances
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)
Somatic symptoms and concerns
Pain
Sleep disturbance
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)
P = participant number
Table 4. Themes relating to the role of emotions in DS
Theme Sub-theme Typical statements
49
DS onset linked to stressful / traumatic life events
Medical/somatic crises
Physical/sexual assault
Multiple stressors
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
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Relationship crises
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)
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
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)
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Inconsistent relationship between emotional triggers and DS occurrence
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)
Post-seizure emotions / experiences
Frustration
Tiredness / exhaustion
Weeping
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)
P = participant number
Table 5. Themes about relating to others
Theme Sub-themes Typical statementsInterpersonal Interpersonal sensitivity 57. “I’m very sensitive to other people’s feelings, and I have a
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sensitivity as positive
Interpersonal sensitivity as negative
lot of empathy.” (P6)
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)
Caring for and supporting others
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)
Fear of burdening others
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
Table 6. Themes relating to resilience, protective factors and coping
Theme Sub-theme Typical statements
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Resilience Emotional strength
Positivity
Control
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)
Protective factors Supportive relationships
Educational/occupational achievements
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
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Work
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)
Coping strategies Distraction and relaxation
Behavioural / social avoidance (‘shutting down’)
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)
P = participant number
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