Background
Aims
Methods
Study design
Framework
Setting
Sampling and recruitment
Data collection and analyses
Results
NAME | Gender | Age | Occupation | Trauma experience |
---|---|---|---|---|
Mary | f | 40 | former nurse | 1, 2, 3, 6 |
Celia | f | 60 | former teacher | 1, 2, 3, 6 |
Paula | f | 22 | former teacher | 1, 2, 3, 6 |
Max | m | 34 | former military | 1, 2, 3 |
Susanne | f | 58 | former nurse | 1, 2, 6 |
Peter | m | 30 | economics student | 1, 2, 5 |
Marta | f | 48 | former smith | 1, 2, 6 |
Sonja | f | 48 | former airport employee | 1, 3, 4 |
Paul | m | 46 | no diploma or apprenticeship | 1, 2, 6 |
Yuki | f | 47 | no diploma or apprenticeship | 1, 2, 4 |
Laura | f | 38 | bank employee | 1, 2, 3, 4 |
Tim | m | 58 | former manager | 1,3,5,6 |
Clara | f | 19 | retail sales person | 1,2,3 |
Laura | f | 33 | former hairdresser | 1,3 |
Nicole | f | 45 | self employed | 1,2,4 |
Astrid | f | 26 | student natural science | 1,3,4 |
Jana | f | 62 | former branch manager | 1,2 |
Trauma experience
“I got the information about soldiers’ illness from the American media… But I didn’t know that it can also develop after physical or sexual abuse” Max, 34
“It started in my childhood and then many terrible things happened in my life. I don’t know why I still have to suffer.” Paul, 46
Emotional ignorance
Further, the results elaborate the struggle of those trying to suppress and control the unknown and, for them, latent dangerous feelings.“I thought it was my personality and I was just weak and useless. Now I know my symptoms were the cause of so many reactions” Sonja, 48“It's like being a ping pong ball blown by a hair dryer. It does with me what it wants; it shoots me to the right, to the left or up or down and I can’t do anything to stop it.” Mary, 40
The Context identifies critical issues such as frequency of symptoms, intensity of symptoms, duration, and social situation. Participants retrospectively experienced a high frequency of symptoms, e.g. every day since their childhood, while the intensity varies. For instance, dissociation had a high impact and intensity in their daily life, while their feeling of worthlessness was described as latent and an almost omnipresent symptom, which eventually was identified as part of their very self. Another important category was the social situation. Participants with an income described a lower level of uncertainty and stress regarding their future. They could also afford to spend money on activities, e.g. movies or inviting their children for lunch in a restaurant, which distracted them, improved their social interactions and helped to release the inner tension. Contrastingly, participants with no secure income or financial support described the feeling of not being a part of society. This situation was described as a context factor that made it difficult for them to cope with their daily life, to manage bills, to manage their administrative tasks, and as a factor that increased symptoms such as rumination and inner tension.“Sometimes it was so intense, I was really desperate. I knew there was something else … Something that makes me react differently from others. I do my best to ignore it.” Celia, 60
The Intervening Conditions describe facilitators and barriers of the patients for symptom management in everyday life, for instance, supportive and caring relatives, with participants describing in diverse ways how relatives play a key role in their life. Individuals related by blood or not were described as a life anchor. Highly important was being able to learn to trust again. Participants who shared some of their traumatic experience with their relatives described talking for the first time: they felt ashamed, unsure, and feared their relatives’ reactions. Experiencing comprehension and compassion helped them afterwards to trust a person and improved their level of symptom burden.“ I’ve had symptoms almost every day since childhood. In school, the others thought I was mad, and I must admit I thought so too. Four years ago, I finally realized that I’m not crazy.” Max, 34
Otherwise, not sharing the cause of their condition with their relatives also generated feelings of shame and guilt.“But I think it’s nice to have such a good friend. It makes it easier… Just to know there is someone around makes me feel less lonely.” Paula 22
For the participants, support in activities of daily life through their relatives was of great importance. They learned to accept their lower level of performance and to realize they were not alone. Further, during that time, participants could re-vitalize.“I can’t… I just can’t. I am too ashamed to tell him (husband). He doesn’t understand many things; I think he might if I told him. Then, I feel guilty about our situation.” Celia 60
For some, medication was an important facilitator. With the help of different substances, the participants were able to manage their daily life. Where medication was not prescribed, some of the participants tried unknowingly to suppress their symptoms and emotions with substance abuse such as with alcohol, cocaine, or cannabis. This reaction resulted in a barrier, making it more difficult for them to understand and handle their situation. Experiencing multiple abuses during their life was described as a major barrier, due to not being able to give a meaning to the pain and suffering provoked by the traumatic experience.“I couldn’t even get up and do the dishes, but he was there. He also helped a lot in raising the children. He really is a good husband. I wouldn’t be here without him” Marta, 48
Being able to make use of the right therapy and avoid unnecessary medical interventions was a major facilitator. Then again, being treated for another condition, for instance depression or schizophrenia, instead of for PTSD was a major barrier.“Not only in my childhood, even afterwards many things happened. I always asked myself, why me? I still don’t know why me. Vodka and my joint often helped me to forget.” Clara, 19
Several participants described somatic symptoms such as back pain, headache, stomach ache as being a barrier, which also meant it was not easy for medical professionals to handle and identify the symptoms as possible consequences of trauma.“I’m angry and sad. I took medication because they thought I had schizophrenia. For many years. Mmm I guess 16 years later I know I have a PTSD and that fits.” Yuki, 47
Adherence to diagnosis was also described as a major facilitator in diverse ways. For example, being able to identify the diagnosis and accept it improved the feeling of having a kind of control over the disorder and decreased the feeling of stigma.“The body sensations are awful. Suddenly my hands are sweaty, or the soles of my feet are wet, bah! The tension in my back is also a nuisance. These body things make it more difficult to deal with” Sonja, 48
“I now accept the diagnosis, I no longer feel ashamed, because it was not my fault.” Jana, 62
Overcompensation
An important sub-category was described as function mode. Mostly participants had a very high level of functioning. They had mostly a higher level of education and, while working, performed efficiently. The reasons for that mode were as follows: The legitimation to be alive based on their school or work performance, the justification as a member of society based on their performance, not having any uncomfortable feelings based on the overcompensation through their workload and seeking confirmation from their professional environment through their performance and qualifications.“I didn’t know what it was at the time… that tension. I was just not here… often… I didn’t feel my body at all” Mary, 40
Other categories such as “caring relatives” were mostly considered important. Sufferers described that having a helpful and supportive relative ameliorated their symptom burden. Hereby different subcategories could be identified, for instance, managing the activities of daily living, such as cooking, doing the dishes or the laundry, shopping, administrative issues, or support with occurring symptoms, such as providing help after being instructed how to deal with dissociation. Another subcategory was emotional support, for example being there for the affected person when needed, being available when the affected person needed someone to talk to. This subcategory also included not questioning whether the experiences of the affected person were real or not, motivating the affected person to keep in contact with others by taking them out for dinner, a walk, or on vacation.“Distraction I think, and later at 18 sort of functioning. At 16 I started to work in a hospital. Shift work was a great distraction. For many years I had just two days a month off. Yeah…” Susanne, 58
Managing the lack of control characterized further participant strategies, mostly based on feelings of anxiety and fear.“Don’t give up and again and again two or three days without sleep and then work again. My wife had to take over many things. That was helpful” Peter, 30
When the described strategies no longer functioned, the affected people often struggled with social avoidance and substance abuse to reduce their psychological tension. Being mostly at home for years, just going out when necessary and having no social interactions was one method of feeling in control over their situation.“I just scratched myself to the bone, just to calm me down. My parents… They thought it was a skin disease, they thought I had chronic eczema.” Marta, 48
“But yeah, but yeah somehow, I had nothing, so I went through addiction, I started with alcohol and other drugs. I also preferred to be alone, to make the whole thing better.” Sonja, 48
Paroxysm
“I was totally incapable of working and couldn’t manage my life” Peter, 30
“For a long time, I did not think I was ill. For me it was as though I could still do everything. Until I noticed nothing worked anymore, because it’s all so exhausting.” Paula, 22
Perspectives
The subcategory social disclosure is a possible result of experiencing different recurrent situations of collapsing and not being able to perform as before. The feeling of disappointment in themselves was also described in this subcategory. Furthermore, feelings of shame and disclosure based on not being able to handle social interactions could be identified. If the affected person was aware of the possibility and had access to a health care provider, a possible result was also inpatient treatment. If there was a lack of support either from the social environment or the health care system, those affected also developed suicidal thoughts.“Because yeaah it’s difficult to describe. In a way it’s liberating. Because yeah, I now know where the problems lie, and I can work on them.” Yuki, 47
“From the age of 22 to 33 it just didn’t exist. It worked unconsciously through nightmares, I suspect. When I was 33 it broke out again and I had a nervous break-down and nearly killed myself.” Susanne, 58