The demographics of the participants are displayed in Table 1. While Table 1. presents the traumatic event to which the ITQ was anchored, it is important to note that all participants reported complex and repeated trauma histories. On the TALE, participants reported having experienced an average of thirteen different traumatic events. Most of these events were repeated experiences of interpersonal abuse both in childhood and adulthood, including bullying, discrimination, aggression, or insults by a close person, or feeling unsafe and unloved during childhood. More than half of the participants had experienced childhood sexual abuse and two participants reported having experienced sexual abuse as adults. Almost all participants reported feeling scared or threatened by psychosis-related symptoms or by contact with mental health services. As observed in Table 1., most of the sample had ITQ scores suggestive of a PTSD or CPTSD diagnosis.
Table 1. Demographic and clinical characteristics of the sample
|
Name
|
Age
|
Gender
|
Ethnicity
|
Diagnosis
|
ITQ group
|
Traumatic event
|
Deborah
|
18-24
|
F
|
White
|
Schizophrenia
|
CPTSD
|
Childhood sexual abuse
|
Tom
|
25-29
|
M
|
Mixed-race
|
Schizophrenia
|
PTSD
|
Psychosis-related trauma
|
Walter
|
30-34
|
M
|
White
|
Schizophrenia
|
CPTSD
|
Childhood neglect
|
Daniel
|
45-49
|
M
|
White
|
Schizophrenia
|
no diagnosis
|
Multiple traumas
|
Luca
|
60-64
|
M
|
Mixed-race
|
Schizophrenia
|
CPTSD
|
Childhood neglect
|
Steven
|
40-44
|
M
|
White
|
Schizophrenia
|
CPTSD
|
Childhood neglect
|
Mary
|
40-44
|
F
|
White
|
Schizophrenia
|
DSO
|
Betrayal trauma
|
Vanessa
|
60-64
|
F
|
White
|
Schizophrenia
|
CPTSD
|
Bullied at work
|
Sylvia
|
40-44
|
F
|
White
|
Schizophrenia
|
CPTSD
|
Sexual abuse
|
Symon
|
40-44
|
M
|
Mixed-race
|
Affective psychosis
|
no diagnosis
|
Physical Assault
|
Aisha
|
55-59
|
F
|
White
|
Schizophrenia
|
DSO
|
Psychosis-related
|
Notes: The table and paper used pseudonyms rather than actual participants names; ITQ: International Trauma Questionnaire; CPTSD: Complex Post-Traumatic Stress Disorder; PTSD: Post-Traumatic Stress Disorder; DSO: Disturbances of Self-Organisation
|
After conducting thematic analysis, three major themes were identified: 1. Factors that facilitate or hinder talking about trauma; 2. Consequences of talking or not; and 3. Relationship between trauma and psychosis. The following themes describe participants’ experiences and their perspectives on what has facilitated or hindered trauma disclosure in the past and what could help to create the right environment in the future for discussing traumatic experiences. This is followed by a description of the most common consequences both in relation to talking and not talking about trauma, where discussion normally resulted in positive outcomes and failure to disclose led to isolation and the development of negative feelings towards the self. The last theme describes the relationship between trauma and psychosis as identified by the participants, in that participants recognised that not having the chance to share their traumatic stories aggravated their overall mental health and described how the content of their psychotic symptoms related to past traumas.
Factors that facilitate or hinder talking about trauma
Of the many factors that played a role in participants’ willingness to talk about trauma, having people in their life that were trusted and considered willing to listen, played the most important role in terms of disclosure. Participants who had the opportunity to discuss trauma usually confided in family and support groups or tried to approach a professional. Disclosure to family and support groups was facilitated by perceiving a safe environment and being around someone trustworthy or who had been through similar events. Discussing trauma was also facilitated by having a supportive professional, who participants described as a person who is kind, patient and interested, who asks questions without being perceived as judgemental. Sylvia describes which characteristics in a professional facilitate trauma disclosure:
“I think the good ones are kind. I think they take the time to understand what you are saying, and they don’t rush you and they just try and- personally I like when people ask me questions because I can go on- so I feel like when they ask you questions they are trying to understand, they are trying to make the effort. My new CPN is lovely, because she doesn’t make it feel like I am a burden.”
Most participants revealed that on many occasions they wished somebody had asked them about their difficult life events, as this was often the only push they needed to be able to share their stories and feeling less alone. However, when they felt ready to talk about trauma, they often did not have the opportunity to do so, or other people seemed distracted and not interested. Disclosure to family was often met by negative reactions including anger, disbelief and dismissal, while disclosure to support groups was sometimes regarded as disappointing or insufficient. Daniel describes his mother violent reaction to his attempt at disclosing a sexual abuse:
“I think I said to you, when I was trying to tell me mum about the sexual assault I said, I told her about the worst bit, and she came down and kicked the Jesus out of us.”
During hospital admissions, participants felt that they had no opportunity to disclose because of a range of negative views of professionals (perceived as too busy or as “the enemy”). Similarly, two participants reported not having the opportunity to talk when they were on probation following a prison sentence, as people around them already had a negative opinion of them and were not interested in listening. Sylvia describes how she felt when she got sectioned and realised that staff in the hospital was not interested in investigating deeper causes for her behaviour:
“it’s just weird cause you think you are getting into the hospital to be helped, but when you get there the only thing they are doing is just keeping you alive. They don’t talk to you about… they give you the medication and otherwise they sit in their office and do- whatever they do.”
Among those patients who did not experience rejection, the fear that people would not believe them or would not understand the trauma or the participants’ ways of coping with it, was enough to prevent them from discussing the event. At other times participants were simply not ready to talk about trauma as they had not processed it themselves, either because they were unable to recall the traumatic events or because they had spent too much time denying what happened. Another common hindering factor consisted in being too scared of possible consequences of talking about trauma. Participants often believed that bad things would happen if they spoke about the traumatic event (e.g., threat to them or family members), either because the voices (i.e. auditory verbal hallucinations) or the perpetrator of the abuse told them so. Vanessa explains she never spoke about trauma as she feared negative repercussions on her parents:
“He said if I ever told mum and dad, he’d make sure the police found out about their illegal poker game. They’d lose the house; they’d go to jail, and I’d end up in the orphanage. That is what he threatened. Well, when you’re nine years old you’d believe it.”
Consequences of talking or not
Participants identified many outcomes related to talking or not about trauma. Those who had the opportunity to discuss trauma reported experiencing positive consequences both for themselves and others. Many participants said that although talking about trauma is hard, when they were able to do so they felt as if a weight had been lifted off their chest. Similarly, some people remarked that discussing past experiences offers a chance of releasing negative emotions that would normally bottle up and become ‘negative energy’. Walter acknowledges the difficulties of discussing trauma, but appreciates the benefits that might come from it:
“I think it’s helpful... like, it’s not nice reliving past pain, but when you talk through it, when you can talk through it and work your way through it maybe, it’s better than just remembering stuff and going through it every time.”
Participants also found value in sharing their stories to help others feeling less lonely and desperate, and reported experiencing positive feelings when they thought they had been useful to someone else. In this respect, participants noted that knowing that someone else went through similar events, experienced similar feelings and survived, could be inspirational. For example, a participant said that the reason why they agreed to participate in this research, was that they hoped that their story would reach more people in similar situations. Luca explains his motivation for sharing his story:
“But see… me, when I do this in here, in me own tinpot way, it’s my way of tryna give something back to somebody else’s. If from what I say, somebody else can make sense of it, and they go, ‘oh my god, that’s the way I think, that’s what I’ve heard’. It might just be one life or two lives or whatever, but it’s not just me. Because I’ve been through it, you know, like I’ve lost my daughter, I’ve lost my – you know – lost my best friend.”
Some participants who had not yet had the chance to talk about trauma, said that they would welcome the possibility to do so as it could potentially help them changing perspective on what happened and fully understand the consequences trauma had on their lives. Participants reported that not having the opportunity to discuss trauma mostly impacted the way they made sense of it. Not having anyone to talk to influenced their understanding of the reasons behind their maltreatment, which meant that for a long time they felt like they were to blame. Self-blame and guilt added to the wide range of negative emotions that they were already experiencing in relationship to trauma. For example, not being able to discuss trauma also led to feelings of shame, as participants considered themselves weak for feeling scared, angry or lonely, especially if they thought that abuse was ‘normal’ or deserved and they had no reason to be feeling that way. It was proposed that this way of thinking about trauma and themselves might have eventually led to the inability to cope with the traumatic event. Vanessa describes how she felt when she was blaming herself for her mother’s death, and the relief she experienced when she could finally forgive herself:
“It was anger, more than anything. I blamed myself when my mother died, I didn’t know her heart had burst. I just thought she died of a heart attack. I blamed myself for not calling the doctor, I blamed myself for not staying up all night later. But when I found out five years later that her heart had burst and there was nothing I could have done, I finally forgave myself. If they only had been honest, I wouldn’t have gone through all that grief.”
Participants reported that not being able to discuss trauma had long-lasting consequences on their lives. They reported not feeling in control, because they often had to give up work and education, as trauma and its consequences affected their motivation and their ability to cope with daily tasks and be among other people. The idea of not having accomplished anything in life led to feelings of sadness and depression. Vanessa describes how the consequences of trauma made it impossible for her to hold on to a job:
“I couldn’t work, because I’ll tell you why- I never know when I wake up what mood I’m going to be in, or when I’m going to wake up. Yesterday I had twelve hours sleep, the day before I had fifteen hours sleep! How can you go to work when you are like that? And if somebody looked at me the wrong way when I was upset, I’d burst into tears, and I couldn’t cope.”
Interpersonal trauma was more frequently associated with avoidance of social contact, as participants considered their loneliness a result of their past life events. Not being able to discuss traumas resulted in being cautious around other people and keeping distance for fear of being hurt or losing someone they cared about, leading to increasing isolation. Participants said they suffered because of their social withdrawal, and even when they wanted to connect with others, they reported not knowing how to do it, as interpersonal traumas resulted in difficulty expressing and feeling emotions, and confusion around the meaning of love and affection. Mary explains that she realises that she is the one keeping people distant, but she does not know how to stop doing that:
“And I can tell myself, I understand that I am- I’m doing it, I don’t let people inside in my heart. It’s because I feel like they’re gonna hurt me. I have got that and my head saying “They’re gonna hurt ya, they’re gonna hurt ya” or something. That is how I feel. Like I do not know how to not do that […] and I have no friends now, not a friend, and it’s pretty sad that – it makes me really lonely when I think about it.”
Relationship between Trauma and Psychosis
While almost all participants agreed that trauma impacted their whole life and that they were largely still affected by it, they had different thoughts around how it influenced their current mental health. While a few participants were unsure, many believed that trauma was the cause of their psychotic symptoms and psychosis-related diagnosis, and that if they had had the chance to discuss trauma earlier this could have prevented their current condition. One participant thought that professionals diagnosed them with psychosis only because they did not believe their trauma disclosure, and they were convinced that their life would have been much better if only they had received help when they were looking for it. Participants’ mental health slowly or suddenly deteriorated as a direct consequence of trauma, or as a result of ignoring the event and its effects for too long. Symon explains how having the chance to discuss trauma when it first happened, could have prevented their current mental health status:
“I think the best time was in 1992 when it first happened. If I would’ve had someone to speak to then, perhaps I wouldn’t have the- I wouldn’t have the psychological damage.”
Even when the trauma did not cause traumatic or psychotic symptoms, it shattered the participants’ confidence, coping abilities and mood, until they could not deal with daily tasks anymore and felt useless and hopeless. Feeling constantly scared as a consequence of trauma, as well as feeling continuously on the edge of a mental breakdown, wore participants down until something else traumatic happened and they could not cope anymore. Mary offers an example of how her everyday activities eventually became unmanageable:
“Every tiny little thing that I did I- I’d phone my husband when he was at work like- I’d spill, do you know the tipp-ex, that white thing that you take the pen off… and I’d start panicking.”
Participants recognised specific links between trauma and the content and characteristics of psychotic symptoms. For example, memories of the trauma faded into visual hallucinations, and voices that screamed and cried often sounded like the participants at the time the trauma happened. They sometimes recognised that feelings of suspiciousness and ‘paranoia’ were also linked to their trauma, and so were some voices warning them off every time they left the house. Deborah explains her understanding of the relationship between her past traumatic experiences and current mental health:
“I think that’s why I hear voices, it’s because I was sexually abused […] and I can see how these different mental health experiences are really clearly linked to what happened to me, through like the content of my voices.”
However, the voices were not always perceived negatively. Despite being daunting, some participants recognised that the voices were probably just trying to keep them safe and to avoid new traumas. The voices would get anxious when the participants tried to talk about trauma, or they would directly order the participants to not talk about the traumatic events. On the other hand, a participant reported appeasing the voices to be able to cope with trauma, and that once they started dealing with the traumatic memories the voices also got better. Walter described the protective role played by his voices:
“I think they try to keep me safe. They’re not very nice, they tell me to hurt people or cars... how are you supposed to hurt a car I don’t know, but... psychosis could very well be linked to my troubled history... they’re just… the things I hear are trying to keep me safe from what... going through the pain again, I guess.”