This chapter describes the experiences of a number of PTSD sufferers and also those involved as family members or carers of PTSD sufferers. The testimonies set out below, which present both positive and negative experiences of services and treatment, were chosen because they illustrate a range of experience of sufferers and carers, and because they encompass both the initial trauma and the subsequent impact it had on people’s lives. Sufferers’ (and carers’) struggles to obtain appropriate treatment and the benefit derived from such treatments are also described.
These testimonies and the subsequent commentaries are a central element of this guideline, as they provide an important context in which the effective treatment and management of PTSD can be understood. Many of the recommendations in Chapter 2 and in other parts of the guideline were developed in response to or shaped by the concerns and experiences of the sufferers represented here.
3.1. Personal testimonies from PTSD sufferers
3.1.1. Testimony one
I am a survivor of an industrial disaster that took place over 30 years ago, in which 144 people died, most of them children. I was 8 years old at the time. The disaster happened on the last day of school before the half-term holiday. During the first lesson of the morning there was a rumbling sound, which got progressively louder. The teacher assured us that there was nothing to worry about – it was only thunder. The next thing I remember was waking up covered in material. I could see a small aperture of light above me and I could hear screams for help, but could not move. Those screams got less and less as time went on. I was pinned down with my desk against my stomach. My right leg was caught in the radiator and hot water was coming out of it. On my left shoulder was a fellow pupil’s head – she was dead and as time went on her eyes became more sunken into her head and her face became puffy.
The rescuers saw me through the aperture above me. As the firemen pulled me out I was passed in a human chain out into the schoolyard, where I was seen by medics before being sent to hospital. The rescue operation itself was somewhat of a chaotic affair, with miners from the local colliery, emergency services and voluntary bodies all coming to help. Debris was moved from one part to another with no indication as to whether anyone was under it. I was the last to come out of the school alive. Only four out of the 34 pupils in the class survived.
I had to grow up very quickly – one minute I was a young boy with no cares in the world. The next minute I had death on my shoulder; I couldn’t play because the majority of my friends were gone, and I had recurrent nightmares. I sustained physical injuries to my head and stomach but these would heal with time – it was the psychological injuries that would go on for much longer and still have an impact over 30 years later.
At first, I could not go to school, as I feared that the disaster would happen again. In addition, my ability to concentrate was extremely poor. It was not until my O levels some 6 years later that I really settled down into education, eventually getting my degree. The attitude of the education authority at the time was not to push individuals back into education but to let them find their way back into the system.
After the disaster, psychological and psychiatric services – in their infancy at that time – were offered to the survivors. I always remember visiting a child psychologist and being told by her that whenever I had bad thoughts I should think of nice things like birthday parties and balloons. As an 8-year-old at the time, I wondered who needed the help. In fact much of the burden for the aftermath of the disaster fell on the local general practitioners and they really had to pick up the pieces and are to be praised for the role they played in the community.
I had nightmares for many years, flashbacks of what happened on that day (the girl’s face on my shoulder), a fear of noise (particularly thunder), a fear of crowds, and a sense of guilt as to why I survived and others had died. The absolute torment of these issues engulfed my whole person, sending me into the depths of despair and depression.
Events (such as the earthquakes in Turkey) can trigger off flashbacks and deep depression. The depression totally immobilises me. I can’t even pick up a razor to shave, unable to look in the mirror; I question my existence. It becomes so intense that I have to go to bed for a couple of days and wait for it to pass.
How have I overcome or come to terms with these issues? The answer is that I haven’t – I have learnt to live with them. The effect of the disaster will be with me until I die. Some survivors have been able to manage it and come to terms with it better than others. I have found that over the years I have been able to talk about it more easily without getting upset. Indeed, talking about it has helped me to come to terms with it and it’s surprising how often new facts come out, having been released from my subconscious. My advice to any one involved in a traumatic event is to speak about it and to release the anger and frustration that inevitably builds up within you.
3.1.2. Testimony two
After my final tour of duty in the military, I came home in 1993 feeling like my whole life had changed and that my attitude to my friends and life in general had changed. I had flashbacks, problems sleeping, was absolutely terrified of bangs and fireworks, and felt guilty and ashamed that I was the only one who seemed to be affected. My self-confidence had gone, I struggled with mood swings and had difficulty socialising.
I had my first breakdown in 1995, which resulted in my GP [general practitioner] prescribing Seroxat [paroxetine] that made me act in a frenzied and uncontrollable way when I had either forgotten to take it or tried to come off it. I was not offered any counselling or a referral to a psychiatrist and no investigations were conducted to find the cause of my problems.
I had a second major breakdown in 1999. I could no longer cope with my job because I couldn’t deal with any confrontational issues, and was desperate to commit suicide. My life consisted of these spiralling periods of self-doubt, self-hate and worthlessness. I had no idea what was wrong, only that I felt I was going mad. I had many other problems, including anxiety, hyperventilating, sweating and social phobia, to name just a few. There were no clinics I could go to and no support groups. All I wanted to do was talk to someone and tell them how I felt and what I was going through, and how I could not cope. I went to my GP after I admitted to my wife that I wanted to kill myself.
In the end I saw a critical incident debriefer for 10 sessions (funded by my employer on the recommendation of SSAFA [Soldiers, Sailors, Airmen and Families Association] Forces Help) who eventually diagnosed PTSD in 1999. I cried for hours because for the first time in 6 years someone had told me I was ill. When PTSD was explained to me, I fitted every criterion. I knew then that I was not going mad, that I was not the only one who felt this way, and that my problems were normal responses to abnormal occurrences. I was prescribed more drugs (dothiepin [dosulepin]) that were steadily increased until I reached the maximum limit, but they turned me into a zombie. Again no psychological intervention was offered.
When I was first referred to a CMHT [community mental health team] in 1999, the CPN [community psychiatric nurse] would stare at the ceiling and fidget while I tried to explain to him what happened and how I felt. I didn’t feel that I could build up any trust with him and he admitted that he did not have the skills or understanding to help me. On one occasion I explained that I had had a problem with Seroxat and as a result was scared to go back to the GP who had prescribed it. It seemed that the CPN did not at first believe me when I said that I found Seroxat to be addictive because he had to ask his colleague to confirm what I had told him. Imagine how I felt when he said this, implying that he did not believe a thing I said? I refused to go back after that and was sent a letter saying that because I had not attended my last appointment they considered me fully recovered and were not going to send me any more appointments. Maybe a questionnaire or a visit to ascertain why I had stopped going might have been better?
It was about a year before I saw anyone again, but I never once got to see a consultant psychiatrist, only the junior doctors who rotated every 6 months. Every time they changed, the new one never read my notes; it was always, ‘OK, let’s start by you telling me about yourself’. I could never build up any relationship of mutual trust and understanding. Once my wife came with me to see a junior psychiatrist because she was very concerned about my high dose of medication (250 mg of dothiepin [dosulepin]), which made me sleep extremely heavily and for long periods. The psychiatrist agreed to reduce my medication to 225 mg, but I was dumbfounded when on my next visit she asked me if our sex life was now better as she felt that my wife’s concerns were due to her being sexually frustrated.
By now I had been to Combat Stress (a charity that helps ex-service personnel who are suffering from mental health problems) for a 1-week residential stay. This helped but initially was only a week at a time with a 6-month gap of nothing. I needed more help.
One psychiatrist had written to my GP and told him that they could no longer provide help for me because they had done everything they could and did not have the skills or resources in this area to help me further and recommended that I visit Combat Stress again, as they were the specialists who could really help me. My GP unfortunately did not agree and as a result I was denied my right to treatment. My GP also denied that he had even received letters from the CMHT when I questioned his decisions. After making a complaint to the senior partner I changed my doctor because I could no longer trust him.
When I needed help the most, I was let down. I was taken off the psychiatrist’s books but was not told that I was no longer going to be getting any appointments. When I phoned 4 weeks later needing to see a psychiatrist I was told that I had to be re-referred via my GP. I went to him and was re-referred only to a CPN, not to a psychiatrist, who had clearly not read my notes. I refused to go over what I had been through again and told the CPN to read my notes because it was all in there. I was then informed that this was an initial appointment and that because his books were full they could not see me for another 2 to 3 months. I never did get an appointment from him. This was when I lost all hope in the NHS.
After this I reduced my own medication and using some of my war pension I set up a website about PTSD which explained about the different ways people can help themselves with techniques I had been taught and learnt myself. I wrote everything in a language that anybody could understand and included links to other groups around the world that could help PTSD sufferers wherever they came from. It revived very painful and upsetting memories but my whole motive was to provide information and support to fellow PTSD sufferers so that they did not have to go through the hell that I had to endure. I thought that if I could save just one life, prevent one person from committing suicide, then it was all worth while. My website is now the number one PTSD self-help/information (non-medical) website in the world and I have had many hundreds of thousands of visits to its pages and hundreds of messages of thanks and support.
After another year of being unemployable, I slowly managed to begin a new, ‘drug free’, life, and with the support of my family I started a new job. Now I have been taken on full-time at work and although I still have to deal with the anxiety, stress, shakings, avoidance and sweating on a daily basis, I am slowly rebuilding a life that just 3 years ago I thought was impossible.
There is hope for people who suffer from PTSD: you can rebuild a life again with the support of your family and friends. I have proven this, but it is not easy and there will be many times when you want to give in. Just accept that you will never be the person who you were before your problems started and accept the new you, warts and all (that’s hard, I know, but it is possible).
I feel that healthcare professionals need training and education to understand PTSD (that it can arise as a result of military action) and that it can and should be treated. It is their responsibility to provide treatment in a sensitive, caring and understanding way and not to put PTSD sufferers on medication without adequate review or to reject us as the Ministry of Defence and our communities have done.
3.1.3. Testimony three
The death of my brother in a mass disaster catapulted me out of normality into another world for which I was totally unprepared. Visiting the scene a few days later was one surreal experience of many. Seeing the debris, being at what was basically an enormous gravesite, was something I needed to do. But it had an effect on me that even now, so many years later, remains almost impossible to put into words. What I needed was information, as well as practical help and support to get me through the hideous first days. What I mostly got instead, sometimes from well-intentioned people, ranged from insensitivity to overprotection. They seemed to have expectations of the ‘right’ way for people in my position to behave – and I didn’t fulfil those expectations.
I first went to see my GP several weeks later. I used the excuse of not feeling well to see her and during the appointment I told her what had happened. She said that anger was an inappropriate emotion – she wasn’t uncaring, but she seemed to have no understanding of what I might need. I didn’t even know this myself, but I left the surgery feeling even angrier than when I had gone to see her – she was the professional and I expected that she would have some clue about what to suggest to make me feel better.
I tried to get on with my life while becoming very involved in trying to find out why the disaster had happened. I got to know other people whose relatives were killed in the disaster and we formed a support group of our own. We once invited a therapist from a trauma clinic to come and talk to us about post-traumatic stress disorder. While she was describing how we might be feeling I felt I couldn’t stand it and left the room. Others did the same or put their heads down on the table and cried. Some of it was relief at the recognition that maybe someone understood and was acknowledging what we felt. Some of it was dread – how could we survive feeling this way?
At social events with friends and people from work, I couldn’t relate to the ordinary things that were supposed to be amusing and meaningful any more. My experience put me in another category – I felt like I was never going to be the same again.
The next crunch time came for me when I was sitting on the tube [the London Underground] 8 months after the disaster. I was reading a newspaper article that was describing what might have happened to the bodies of those who had been killed – what they could have felt, how they would have been conscious before they died. As I looked around at the other people on the train I felt desperately trapped and wanted to scream at them.
I went to see a therapist at the trauma clinic I had found out about at the support group. I had to fill in a lengthy questionnaire about how I was feeling, without any explanation as to why I was doing it. I felt like screaming all over again – couldn’t someone just help me? In the session with the therapist I didn’t feel capable of saying what I wanted because I had no rapport with him. The gap between my experience and him seemed to me unbridgeable. I felt as if I was of more use to him than he was to me and so I didn’t go back.
I felt more and more incapable of relating to people who didn’t share my experience. The constant effort of behaving ‘normally’ put a huge strain on my life – I was always on edge, bad-tempered and intolerant, highly apprehensive about something happening to my children or my husband. Getting a decent night’s sleep seemed impossible. Words beginning with ‘d’ always became ‘death’ and ‘destruction’. The rest of the world seemed to want me to ‘put it behind me’, to ‘get over it’. I veered between avoiding things that reminded me of what had happened and thinking obsessively about it.
The fifth anniversary brought another crisis. How could I carry on a normal life feeling as I did? I decided to seek help again – six sessions with a local counsellor who listened to what I had to say and tried to help me find ways of calming down. I saw this as a good way to spend the waiting time while I got an appointment at the trauma clinic to see another therapist. The sessions I had with him were definitely of benefit and much more productive than my first attempt. We had a rapport and he was completely non-judgemental of me in a way that I found really helpful.
I can see now that it was terribly frustrating not to have it sufficiently acknowledged by the first doctors and therapists I saw that there was something badly wrong. It seemed to be a real struggle – I felt like I had to jump through a number of hoops to ‘prove’ that something was wrong with me. At the same time, I resented the idea that the rest of the world was somehow ‘normal’ and I was not! How much did my brother’s death contribute to how I felt? How much was it to do with the fact that so many others had been killed at the same time? How much was it to do with the way people had responded to me afterwards? I still can’t be sure, but I do know that most of what happened in the aftermath made it worse. Those to whom I will always be grateful, however, are the people who offered not sympathy but practical help. What would also have been of benefit to me was straightforward, objective, non-judgemental medical information and advice.
Sixteen years on, life remains stressful but mostly manageable. I have joy in my family and find the work that I do to help others in similar circumstances very rewarding. I was right in thinking that I would never be the same again. I still have extremely strong feelings about what happened and sometimes wonder if I should – with the information I have now about trauma and PTSD –try some form of therapy again. I am sure it is never too late to try.
3.1.4. Testimony four
Other than two paramedics I was the first medic (I am a nurse) on the scene of a mass disaster. I had good reason to believe that members of my immediate family were involved. I was involved in resuscitation, had a person die in my arms and witnessed trauma and death, while looking for my loved ones among the carnage. I prepared equipment, stretchered casualties, and moved and helped to identify dead bodies. I later found out that my loved ones were not directly involved.
My feelings about what I had witnessed and experienced changed over time – through disbelief, numbness and a sinking feeling, reactions common after something so traumatic. The impact increased as time moved on – the reality, enormity and the closeness of losing loved ones are almost indescribable. I have gone through many phases of this condition and my PTSD has been determined by psychiatrists as being moderate to severe, and chronic (it is 8 years since it happened). PTSD has affected every aspect of my life and my family.
In the immediate aftermath of the disaster I could not find any help. There were no counsellors at the scene or available afterwards, and my local health centre kept usual hours. I went there the next day at 6.30 a.m. in a drunken state to seek assistance, but there was no one to talk to. I later returned to the health centre, demanding to see a doctor. A young locum advised me to ‘see it through’ and did not offer help, counselling or sedation.
The next day a local GP came to see me, but she spent more time telling me about her own experiences of the disaster. This was frustrating because I desperately wanted to let off steam. In the end I spoke to the police on the third day to ‘let it out’. I also rang my employers, who at first were empathetic; they suggested occupational health, but I didn’t see the point, as all they would do would be to refer me to a psychiatrist, nurse or a therapist. When they rang back the next day I was told that two professionals were vying for my case, although I had to wait to see them.
The next day I rang and said that if I didn’t get help I was either going to go ballistic or knock someone’s door down. The following day I met a therapist who was nice, empathetic, but ineffectual. She told me that she had not dealt with PTSD before but would like to try desensitising treatment that she had ‘read about’. Her attempts to try and get me to relive the event while waving hands and lights in my face caused nothing but anguish.
I saw this therapist for months, but after making no progress I saw the other therapist who had previously been interested. When her interventions also failed, she wrote in my notes ‘Mr — is not responding, or is unwilling to respond to treatment’! I also felt that the GPs were also clearly out of their depth. They were not willing in many cases to refer on to others as they believed that no treatment should be offered for PTSD for at least 3 months as most people would get better with no intervention. However, I felt that I desperately needed help in the days following the disaster.
I feel I irritated all the professionals that I contacted because I openly admitted the problem, cried for help, admitted that I was sleepless and drinking too much. But I had no help of any kind from them. Months later I saw a psychiatrist, who told me that he had read things on the internet! The only useful thing he did was to prescribe Prozac [fluoxetine] (although I found this hard to understand as I was suffering from PTSD not depression). The dose was ineffectual at first but he doubled the dose, which flattened my emotions and helped me to sleep. At the time that was useful, although perhaps inappropriate. Nothing else happened with this man.
At first my employers pledged their support, but were soon eager to have me back at work. Fourteen months after the event I was sacked on the grounds of ill health (I had hardly attended work during this time). Years later I sought another referral – I had to wait 10 months to be seen. Again this person was nice, but repeated visits proved fruitless. This therapist referred me to another psychiatrist. This man was the most sensible of all; he said ‘given [my] history of unsuccessful interventions, there was little else that could be done, save chemical intervention’. Now, this wasn’t good news, but he was realistic, with no rubbish, so I appreciated this. I was prescribed Cipramil [citalopram] in varying doses, until I settled on 20 mg twice daily. The troublesome side-effects are lowering of libido and increasingly vivid nightmares, but on balance my quality of life is at its best since the event. I feel this is down to the medication, the passage of time and being able to work again part time.
I also meet with a few other people who were closely involved in the disaster. This ‘self-help’ group is perhaps the best ‘intervention’ I have had because it is with people who have had the same experience, really understand and do not patronise me.
3.1.5. Testimony five
In 2000 I was arrested for being part of a group fighting for democracy in my home country. I was held in prison for 2 months, during which time the police raped me. They beat me around the head so badly that my eardrum was perforated. I was released, but later they arrested my husband and took him away in the middle of the night. I don’t know if he is alive or not. Officials kept coming to my house to interrogate me. They threatened to imprison me again, so in 2002 I fled the country, leaving my daughter with my mother.
On arrival in the UK I was interviewed by immigration officials. My English is not good, so an interpreter, who was a man from my community, was present. But I couldn’t tell them what had happened because we can’t talk about rape in my community – it is so shameful. I couldn’t even tell my solicitor what had happened – he was also a man and I felt uncomfortable speaking to him. I was refused asylum.
I couldn’t understand why I was being treated so badly and found that I was always crying. At my appeal hearing I still couldn’t speak about the rape, but I told them I had been in prison and tortured. They didn’t ask me any questions about where I had come from or what I had been through. I was really upset during the hearing and I cried. My appeal was refused some months later. My solicitor didn’t do anything more to help me.
I had a friend who came with me to the appeal hearing. She saw that I was crying all the time and suggested I should go to Women Against Rape (WAR) and tell them what happened. So I did and it was the first time I had been able to talk about it and it helped me a lot. The Home Office wanted to send me out of London but I was referred to the Medical Foundation who took me on for counselling, so I was allowed to stay in London. And WAR found me a new solicitor who made a fresh appeal on my behalf. But after about 6 months the Home Office closed my file, and I had to leave the flat where I was living and lost my money.
My solicitor arranged some emergency accommodation through social services, but I was only allowed to stay for 2 weeks. I had a specialist report about my ear and a psychological report, which diagnosed that I was suffering from post-traumatic stress disorder. But although some people in social services wanted to house me, others decided my medical evidence was not enough. After the two weeks, I was homeless again. It was awful – it was just before Christmas and the weather was freezing.
When I was homeless I had many problems. I was sleeping in a park and my bag was stolen by two boys. I went to the police for help, but they arrested me! I went to many charities that are meant to help asylum seekers but no one would help me. The Refugee Arrivals Project let me stay a few nights but then told me to leave, saying I could sleep at the airport. When I asked the Medical Foundation for help they said I was not an emergency. What is the point of trying to make someone feel better with counselling if you know they have nowhere to sleep that night? I slept at the airport, on the street, in a church corridor. I just wanted to die. Fortunately after a while some nuns took me in to their hostel.
Because of the torture I suffered I have physical and mental health problems.
I suffer from repeated ear infections and terrible headaches. When my ear is infected it is so painful I can’t see (I am awaiting a third operation). I am also nervous, angry and want to be alone. I can’t watch TV or speak to anyone. I tried to get help from a GP because I was crying all the time and I couldn’t sleep. I keep seeing what happened back home, reliving the rape over and over. I have bad memories and I can’t get these things from my mind. And I really miss my husband and my daughter. But the GP was not good or sympathetic. I told him that I am upset, and that I have other problems like constipation. He just told me that I have depression, and gave me sleeping pills and told me to eat vegetables. I then saw another GP, who was more understanding. He changed my pills. He recognised that I have flashbacks and that I need help. I still see a psychologist every 2 weeks and she makes practical suggestions about my health. She told me to come off the tablets gradually.
WAR contacted my MP and then eventually I won the right to stay in the UK. They helped me get housing and income support. I see them often and it helps me a lot to meet with other women who have suffered like me, and to work out how to improve our situation.
Winning my immigration case was the most important thing. Everything else depended on that. It made me feel so much better, especially now that I am hoping my daughter will be able to join me here. Now I am like a human being – before I didn’t feel human.
3.1.6. Testimony six
In 1989 I was raped by a man I met in a disco while backpacking in Australia. I was 19 and alone. I didn’t handle it very well, not least because I had contracted an STD through the attack. I didn’t report the attack because for the first 2 weeks afterwards I felt it was my fault; I also felt I could not face having to go through a trial. On returning to the UK I told no one except my best friend; but because it upset her so much, I decided there was no point in telling anyone else. Also at the same time there was a family crisis brewing and the last thing I wanted to do was add fuel to the fire. I did a year at college, where I began to drink heavily, got a boyfriend, with whom I had sex five times in 3 years, and got a job in the Midlands. After about a year of starting the job, I began behaving very strangely (e.g. sitting on the edge of my bed and rocking backwards and forwards) and my boyfriend sent me to the doctors, who sent me to Relate, which was the only service in the area that even vaguely came near to addressing problems such as mine. While well meaning, the person I saw at Relate was not qualified in any way to deal with my problems, though at least it gave me an outlet to talk.
Soon I got a new job, left the area and split up with my boyfriend. Six months later I went back to Australia to live in Sydney for a year. I felt fine about being back in Australia but on my return I continued to drink heavily and while out in clubs would, to my shame, tell people what had happened to me in 1989. I sought a counsellor, one of whom offered ‘to re-enact the attack’, but I declined and, despite her protestations, stopped seeing her.
In 2000 I started a new relationship with a man who was a big socialiser. My drinking and drug taking escalated and while I was doing very well in work, the pressure was growing and cracks were appearing. My partner told me I had to seek help, so I went to see a few more counsellors privately but none seemed able to help me. I stopped seeing them as they seemed to increase my despair at ever being able to find the right sort of help. While I was aware that my behaviour was destructive, I seemed unable to get out of the circle of depression and self-medication.
In May 2002, I was attacked at the top of my street. A man ran up behind me and brought me down to the floor. He threatened to rape me but eventually walked away leaving me physically unharmed. I reported the attack and the police were very good but they never caught the man. I had a leaflet from Victim Support but had no actual support to speak of. I took a week off sick and then returned to work, but a few weeks later my partner and my manager advised me to take more time off. During this two-month period, I visited my sister, where I broke down and became hysterical. My sister – a community psychiatric nurse – was very concerned and insisted that I visit my GP. My GP referred me to the local Traumatic Stress Clinic, where I saw a therapist who told me I was clinically depressed and had post-traumatic stress disorder and that it was likely that the latter was chronic, dating back to the first attack in Australia. He recommended antidepressants and for the first time in years, I felt I had hope.
While on a waiting list for psychological treatment I had my first alcohol-related blackout, during which I started a physical fight with my partner’s family. I then stopped drinking for a month because I was afraid of what I might do. I was offered a choice of two treatments and chose exposure therapy, which started in January 2003. It was very hard work but my therapist was excellent – I could tell her everything about my habits, feelings and failures without feeling judged. The treatment sessions were an hour long and once we had gone through my thoughts and feelings about pretty much everything, we wrote out a narrative of the attack and then fine-tuned it. We also recorded it and I would read it through a number of times and we would note down the most stressful points and rate then in terms of anxiety. For ‘homework’ this would be repeated and there would be various other bits of relevant reading. I had one more alcohol-related blackout during this time.
The treatment ended successfully in June, but my relationship finished a month later (it had been breaking down since my first blackout). I moved out and stayed with a friend, while focusing on work as a way of avoiding the miserable reality of my life. When work stopped for a period, my drinking and blackouts increased. I felt anxious a lot of the time, and in November I took too many antidepressants (five as opposed to two) and talked openly about suicide. My housemate and mother took me to my GP and the following day I saw my psychiatrist at the Traumatic Stress Clinic. He increased my antidepressant dose and suggested I start a course of cognitive–behavioural therapy with my original therapist.
In January 2004 I started the treatment and it was a revelation to me. The literature I received plus the homework proved to be extremely illuminating; discovering what my ‘trigger points’ are, what core beliefs I hold, and where they come from, has been very helpful. I now understand why I behave the way I do. I believe it was a very important part of my recovery, as I have been given the tools to help myself and put them to use as soon as I could. I have learnt to recognise certain feelings, which I’ve discovered are triggers, and stop any negative behaviour. Throughout the treatment, I kept records of my thoughts and how much alcohol I had had, both of which were very useful as I could see my thoughts and actions written down in black and white, which made it easier to understand the thread that held them all together. I am now better than I have been for years, more confident, calmer, my anxiety has stopped and I can at last see a realistic future ahead of me – one I am looking forward to.
In the last year, I bought a house, stopped smoking, joined Weight Watchers and started to exercise regularly. Things are also going very well for me professionally. I feel incredibly lucky to have received effective treatment that helped me to break out of a miserable, vicious circle of depression, excessive drinking and anxiety that would only have got worse. I am in no doubt that the help of the staff and the treatment I received saved my life, or at least gave me back a life I think is worth living.
3.1.7. Testimony seven
I never told anyone what had happened to me until I was in my mid-40s. Until that point my partner and friends had no inkling of the secret that I had carried with me all my life. I had a successful career, a happy marriage and was, on the surface, outgoing and assertive. But on the inside I felt very differently. I was waiting, constantly on alert for my secret to be found out. I found it difficult to trust people and had sleep problems and other physical ailments now readily identified as being stress induced. My body, for decades, had lived on a knife-edge, on high alert.
I am one of five children, and was sexually abused by my father from the age of 10 until I was 15½ when I managed to leave home. In September 1994 I was devastated to discover that I was not the only family member to have been sexually abused. Even though our abuser was dead by that time, the impact on me was massive.
The enormity of what had happened to me overwhelmed me. I was swallowed up by a continuous stream of flashbacks replaying the ugliness of my childhood: the theft of innocence through escalating abuses with rapes on a daily basis towards the end; the physicality of the onslaught on my small, defenceless, body; the inevitability of pregnancy and, following a suicide attempt, the nightmare of the miscarriage (trying to ram the small foetus down the bath plughole before finally flushing it down the toilet).
I had panic attacks that felt like heart attacks, but I was unable to speak about the evilness that was my childhood. Saying it would make it real, and I had struggled all my life to not think about it.
I had always known that I had been sexually abused. That knowledge had never left me. But the enormity of that knowledge and the constant pressure of having to maintain my silence had created a legacy within my body. Headaches, irritable bowel, back pain, gynaecological problems, an irrational fear of thunderstorms, startle reaction, and sleeplessness were all clear indicators that something was wrong. But not one doctor ever asked me if I had ever been subjected to sexual abuse as a child. My body was crying out, saying that something was wrong. But because no one asked me the question, I knew, as the child had known, that it was not OK to talk about it.
Suicidal thoughts intruded once again and it felt like the only recourse I had – to escape the constant barrage of flashbacks. My life was a mess. I was off work sick. My husband could only look on, helplessly, as I shrivelled up before him, into the posture of a small child. I remember his hands hanging by his sides, unable to reach out to me because I recoiled at the mere thought of a man’s hand touching my body. My father, though dead, was there. I could see him, smell him, taste him. I gagged on the memory it was so real. It was real. I was in a parallel universe, twinned with the past and present.
Eventually I gained the courage I needed to disclose my secret to my GP, which was a painful and shocking experience. She sat motionless, and months later told me that she had felt helpless, aware that her knowledge about such abuse and the long-term impact was inadequate. Notwithstanding her lack of experience, we made our way together down a pathway that could, so easily, have been the wrong one for me.
Given the state I was in, my GP could have had me admitted to hospital – and it is likely that I would have gone down that downward spiral of madness and the likelihood of misdiagnosis. But, she had enough about her to realise that I might be suffering something more readily identifiable as PTSD – and in doing so, she started me on the pathway that saved my life.
In 1994–95 I was able to gain immediate access to trauma counselling through my employer. During 16 sessions I worked in partnership with the counsellor to explore the memories that had so carefully been hidden (not all of them, though, for I am amnesic about large periods of my life prior to the age of 10). My counsellor worked gently with me and together we slowly unpeeled the onionskin of memories. She tried several approaches with me before she found the one that worked best for me. The approach was eclectic and focused on the trauma but in a way that was humane and minimised triggering further trauma. My counsellor used different techniques as the need arose and was able to hear what I needed rather than imposing theoretical models that would have been unworkable for me. It was a partnership, and was important because it meant that an early foundation of trust was laid. Gradually I came to understand the link between my fear of thunderstorms with my childhood experiences. I understood why I had avoided certain environments and why intimacy of any kind (including friendship) was so difficult.
My sexual relationship with my partner had taken a massive downward spiral – any touch evoked painful and intrusive memories. Initially I submitted to his sexual desires, because I felt guilty about saying ‘no’. But in saying ‘yes’, it only made it worse. The flashbacks intensified and I felt that life was no longer worth living. It had been impossible to believe that I could ever escape from the world that my life had become.
I was able to find the will to live and my counsellor was instrumental in that, because she gave me the time to reflect on my experience and the feelings associated with it. But for me, sanity came through meeting others who had endured a similar childhood (I met these survivors through the group CISters). It gave me an insight that my counsellor had never achieved into the full impact on my life that the abuse had made. I was a workaholic, obese, with no real friends –and the only good thing I had going for me was that I had a determination in my heart that my abuser was NOT going to win.
Slowly I gained ground and as each new insight came I was able to see my symptoms diminish. The panic attacks tapered off, the intensity of the flashbacks dwindled, and my irritable bowel began to loosen some its hold on me. I was able to breathe again.
PTSD still walks beside me – the chronic impact of the abuse is not easily shaken off. At times of stress some of the symptoms return (such as startle reaction and insomnia) – but it is extremely rare for me to have flashbacks, which have only occurred twice in 7 years. I saw my counsellor again in 2001 for six sessions after a car accident and in 2003 for another six sessions after I was diagnosed with fibromyalgia. It was helpful to see the same person because she knew my history and was able to connect the feelings of helplessness I felt on both of these occasions to my feelings about my childhood. But life is easier and simpler, and my returning good health brought with it a return to work and the opportunity for a new way of living: finally being able to relax after years of living on the edge of my nerves and looking over my shoulder.
Anger was not an emotion I allowed myself as a child or as an adult. But anger is what I feel at times, and it is a powerful motivator and lifesaver. At times I wonder how my life would have been if someone had asked me decades ago whether I had ever been abused in my life. That question would have given me an opportunity to disclose my secret, and perhaps I would have gained a new quality of life, years earlier, rather than having to wait until I was nearly 50.
3.1.8. Testimony eight
It was November 2003 and I was on duty as a firefighter in South Wales, when I received notification that my wife and son had been involved in a car accident. I drove immediately to the scene of the accident not knowing how badly injured they were or even if they had been killed. When I arrived I saw several emergency vehicles on the scene and what looked like a bad accident from the amount of 999 personnel rushing around.
I remember seeing a paramedic carrying out resuscitation on a casualty, which I immediately thought was my wife. I felt tremendous anxiety and rushed over to see. However, it was not my wife but one of the young men in the other car. My wife did not require resuscitation, but had suffered multiple fractures and injuries and was trapped in her car. When she saw me she became very upset and begged me not to leave her while they cut her out. She looked in a bad way – I feared she might not be able to walk.
My son was also badly injured with a large head wound. I went to comfort him for a few minutes while the fire service cut my wife out. I helped put my son into an ambulance. In addition to the nasty laceration to his head my son was emotionally distraught, which caused tension between the ambulance staff and myself, as I believed he should go with his mother to the same hospital. I soon learnt that three of the four boys in the other car involved in the accident were killed instantly. I was sad for their parents but more concerned that my family would be OK and survive.
After their injuries were dealt with in the A&E units there was then the start of various out-patient appointments to attend. We have four children and the practical demands of coping with every day and family life, and the logistics of ensuring my wife’s and son’s attendance at the various hospital appointments, was therefore very demanding. After the crash I had mixed feelings; I would feel angry at the way the crash happened and that there was nothing I could do to stop it or help. I was physically exhausted, but was finding it hard to sleep. As soon as the bedroom light went out at night a light would come on in my head and all I could do was lie there and think. When I would eventually fall asleep, I would wake up with nightmares of the crash. I could not get away from it. It was all I could think about in the day and all I would dream about at night.
I had to try and be strong for the kids, but when I would get a moment to myself, I would just break down and cry. I didn’t like feeling like this so I would just keep busy. Keeping on the move was stopping me getting upset, but was making me more run down. I wanted things back to normal; seeing my wife and son in pain every day was driving me mad – I just wanted to explode. I found myself getting even more angry and short-tempered. I was looking for confrontation, I wanted to take it out on someone, but I knew I couldn’t as it would look as if I could not cope, so I kept it bottled up inside.
I was finding this a great strain and visited the brigade’s medical adviser where we agreed that I should be referred to the local NHS traumatic stress service, with which South Wales Fire and Rescue have a partnership. I went to meet a cognitive–behavioural therapist with a special interest in post-traumatic stress disorder. After a few meetings with this therapist he diagnosed me as suffering from PTSD and depression. I was prescribed various antidepressants on his recommendation by my GP. My therapist then started my CBT treatment, which included breathing retraining to help control my anxiety symptoms when I had an intrusive image of the accident, and grounding techniques to help me with flashbacks of trauma and feelings of anger and frustration.
We then made an audiotape of what had happened that night in great detail, including what I saw, heard, smelt, touched, tasted and so on while at the scene of the accident, including all my thoughts and feelings, as though I were reliving it again. I took this tape home and listened to it for an hour a day, marking on a chart my anxiety feelings at the start, during and after approximately an hour. I also incorporated the breathing and grounding techniques to help me cope with the reliving with the tape. After a few weeks of this treatment the tape started to get boring, apart from a few incidents that my therapist referred to as ‘hot spots’. We made a new tape with just these hot spots and added new information after them to emphasise what actually happened. For example to ‘I thought my wife was dead’ we added ‘she is not dead but is still recovering from her injuries’. Once again, after a few weeks of listening to it every day it got boring as well and I was then able to think of events of that night and not get upset, angry or frustrated.
Before I met with my therapist for CBT I didn’t think I needed help or that I was depressed, but after just a few meetings with him I could see that I did. I found my therapist very easy to talk to, understanding, a good listener and very helpful. The treatment he provided definitely helped me get over this traumatic time in my life. I am now back at work attending road traffic accidents as normal with no fear or reliving of my wife’s accident. She is now seeing my therapist for CBT as she is suffering with PTSD. We are both hopeful that she can also recover with this therapy and that time heals her physical injuries.
3.1.9. Testimony nine
Working for the London Ambulance Service as an A&E paramedic, I expected a certain amount of trauma, but my experience with handling stress had been good and I believed nothing could affect me. For 4 years on the front line I was faced with many traumatic jobs, which I handled well. Although there was a counsellor on site, I usually talked to my fellow crewmates if something was troubling me. So I was not really expecting that I would ever feel traumatised by my job.
It all started in July 2001 without my really being aware of it, through a build-up of stressful situations. I was called to a job where we were verbally abused and physically threatened. I went home feeling upset but that it was nothing I couldn’t handle – it was just an ordinary day. One week later a very similar situation occurred, but this time I felt slightly more anxious than the week before, vulnerable and what I can only describe as ‘stressed out’. One week after that, while on the nightshift with a crewmate we were threatened again and this time I feared for my life. As we were running away from the man who had threatened us, I felt that I was running for my life: I seemed to float down the stairs from his flat, and the heavy medical response box that I was carrying felt weightless. When we were finally in a safe place we realised that the man did not actually leave the floor of his flat – we were both shaken up by this and went home. I went straight to bed when I got in, but was awoken suddenly by a major flashback from the night before. I was convinced that the man who I thought was going to kill me was in my bedroom – I could not breathe, my chest felt so tight, and my heart was racing. I was having a panic attack.
The next morning I called work. I was hysterical, but the station officer was very understanding; he told me to go my GP, take some time off from work, and offered me the opportunity to see the counsellor at work. I said I would probably like to see the counsellor but that I could not face it at that moment. I went to my GP, who was sympathetic and prescribed diazepam. I don’t think this really made me feel much better, but it helped me to relax and made sleeping much easier. I did not stay on the tablets for very long.
In the following few weeks I felt hypervigilant (that is, highly aware of my surroundings and any slightest noise). It seemed like someone had turned up the volume in my head. I could not face going out of the house at first, and the thought of going to London, where I worked, seemed almost impossible. I was very tearful, anxious and could not sleep very well. I was scared most of the time and paranoid. I felt like a little person in a very big world. I had no confidence and my self-esteem was very low. What was hard for me to comprehend at the time was why was I feeling like this because my crewmate, who had also feared for her life, was not affected by this. I wondered how she was able to go back to work when my whole life was turned upside down. Other colleagues asked me why I was off work with stress when my crewmate was all right. This made me feel really low and totally worthless.
After about 4 weeks I contacted work to make an appointment with the counsellor because I knew that I needed help. Work arranged for someone to come and collect me and take me to London to see the counsellor as I could not manage this on my own. Over a period of 2 months I started to see the counsellor regularly. It was a task just getting into London for the meetings, but I could tell her how I was feeling and I knew she would not judge me or make me feel bad in any way – she was a tower of strength. She told me that I had symptoms consistent with PTSD (my GP, who was not so experienced in PTSD, agreed with this). I was aware of what other people thought of me, but after time I didn’t really care about this. I knew that I had PTSD, that I had had a common reaction to very stressful events, and that I was not going mad.
My counsellor explained everything to me about PTSD and we worked together to set tasks: my goal was to go back to the place where I had feared for my life. But I was also given other tasks to perform, such as taking a walk, going shopping or visiting a friend, which don’t even feel like tasks now, but at the time just thinking about going out would make my heart race and my chest tighten. Some of the tasks at the time made me feel really bad, bringing on feelings of fear and failure. I knew I had to be strong and not to give up – some days I was proud of myself for going shopping when the shops were full of people! In the end, though, the treatment I received from my counsellor was a great success.
Although at first I had wanted to resign from work because I felt that I would never be able to continue with the job that I loved so much, after about 6 months I started to cope with many tasks that I had been set, such as driving to London alone. I returned to work gradually and returned to full duties in February 2002. I was lucky to have a good station officer who realised that my returning to work slowly would be less stressful and manageable. Had it not been for him and my counsellor I feel that I would never have been able to get on with my life.
At first the fact that I had PTSD affected my whole family, especially my boyfriend, who I live with. I found it very difficult to socialise and we did not have a holiday for over a year. I was very dependent on my boyfriend to take me out, but he was very supportive and patient. I have got some really good friends who were also very understanding and supportive.
I am a very confident and outgoing person and feel that I am stronger now than I have been in my whole life. It is really strange how a bad situation, which almost destroyed you, can make you grow in character. I am on maternity leave at the moment after having a beautiful baby girl – I am still a paramedic and hopefully will be back on the road next year.
3.2. Understanding PTSD from the sufferer’s perspective
The testimonies illustrate some of the traumatic events that can lead to the development of PTSD: being a survivor of a major disaster; combat (multiple trauma); sudden loss of a relative or friend; losing or fearing that one has lost relatives or friends in a major disaster; rape and childhood sexual abuse; and exposure to trauma in people who work for the emergency services. However, it should be emphasised that these testimonies do not represent all of the traumatic events that may culminate in PTSD.
3.2.1. Recognising and diagnosing PTSD
People with PTSD usually recognise all too painfully that there is something drastically wrong, but may not be able to put a name to their feelings and symptoms. Without a diagnosis, sufferers can feel as if they are losing their grip on the world around them, and even on a sense of who they are.
Sufferers can languish for years without a diagnosis. Disclosure may be a problem, particularly in cases of rape or sexual abuse both in the indigenous and refugee population, which can lead to significant delays in diagnosis. What is clear from many of the testimonies is that if the condition is unrecognised, left untreated or is poorly managed, then the symptoms can be prolonged or can worsen significantly over time. Sufferers may withdraw into themselves and be unable to communicate with their families.
The effect of a traumatic event on children not recognised or treated for PTSD can last a lifetime. The sufferer in the first testimony, who received no systematic treatment for PTSD, speaks of the ‘psychological injuries’ lasting for over 30 years. The sufferer in the seventh testimony who had been abused as a child felt that she could not speak about what happened to her because she was never encouraged to do so by healthcare professionals despite presenting with many physical complaints. She remained silent until she was middle-aged.
Once a diagnosis is made, the relief for some sufferers can be immense: professional recognition of a named and identifiable condition can make sufferers feel that someone understands and acknowledges how they might be feeling; as the sufferer in the second testimony puts it, he now knew that his problems ‘were normal responses to abnormal occurrences’. However, the relief or emotional release can precipitate extreme distress. As the person in the third testimony puts it, it can make the sufferer refocus on what might be the reality of the situation: ‘how could we survive feeling this way?’
3.2.2. Effect of PTSD on personal relationships and working life
For some people, PTSD can alter every aspect of their lives. The emotions generated by PTSD and the physical symptoms associated with it can have a profound effect on the sufferer’s relationship with family and friends. Some sufferers might withdraw from people close to them, and coping strategies, such as drinking alcohol, can further distance sufferers from their social and familial circles, as can the symptoms themselves (mood swings, irritability, etc.). It is not uncommon for people with PTSD to feel that they can no longer relate to the world around them or to other people who have not experienced trauma. Ordinary events seem meaningless. The inability to share the traumatic experience with many people can, as the sufferer in the third testimony phrases it, put one ‘into another category’. Other people’s reactions to the events may seem invalid or untrustworthy. The sense of difference that PTSD might produce in the sufferer can further isolate these individuals. Protracted isolation can lead to a loss of self-confidence and self-esteem, culminating in periods of severe depression. Isolation was certainly experienced by the narrators of testimonies five and six, who felt that they could not talk to close family or other members of their community about being raped.
Some sufferers who have lost relatives in a disaster or other traumatic event can have overwhelming feelings of apprehension about losing other members of their family. This might result in overprotectiveness.
Post-traumatic stress disorder can also have a detrimental effect on employment. For some people the symptoms are so severe that they are unable to function properly in the workplace, although it can also be the case that some PTSD sufferers can perform very highly. Some sufferers attest to a lack of understanding from employers, even if the event or events have been job or service-related: for instance in combat or in the medical profession or emergency services.
For children, the memories of the event can have a significant impact on schooling and emotional development. Concentration might be poor, and educational performance affected as a result, although as in adults, it may also be that children can ‘lose themselves’ in schoolwork.
3.2.3. Sufferers’ experience of services and treatment
The experiences described in this chapter cover a period of over 30 years. In the 1960s and 1970s there was often very limited knowledge on the part of many mental healthcare professionals of the nature and treatment of trauma-related psychological problems. However, as described in Chapter 2 and borne out by a number of the testimonies, there have been considerable improvements in the understanding of PTSD and in the provision of services in the UK. Nevertheless, the availability of effective services still varies considerably. It is a central aim of this guideline to address these variations in practice.
In the immediate aftermath of a traumatic event, people may want to talk to someone in a professional capacity (as did the authors of the second and fourth testimonies), which may mean nothing more than being listened to, shown understanding, and given some practical information about health issues and contact details for services and voluntary organisations.
In the first few months following a traumatic event, finding someone to work with who has appropriate training in the treatment of PTSD, with whom the sufferer can build up a relationship of trust and understanding, is crucial. It is important that these individuals are listened to and their symptoms taken seriously. Furthermore, the sufferer can be badly affected if doctors or therapists attempt treatments for which they have no competency or administer treatments that have no evidence for effectiveness. Such a situation could lead to a complete breakdown in the therapeutic relationship, especially if a lack of knowledge is coupled with an absence of trust.
It can also be detrimental if sufferers feel that they have to prove that ‘there was something badly wrong’, as was the case with the narrator of the third testimony. This struggle to prove the gravity of the condition may exacerbate the symptoms over time. It is also important that sufferers maintain sustained contact with one professional if this is required, otherwise they could feel that they are being passed from one professional to another.
If treatment is not working, this is not necessarily because the sufferer is a ‘poor responder’ or is ‘resistant’ to treatment, just that the right treatment, or the right combination of treatments, has not yet been found.
What is implicit in testimonies two and three is that the sufferers in general felt psychological therapy would have been the right form of treatment, had it been delivered by an appropriately trained professional. For the sufferer in the fourth testimony medication was prescribed to help manage sleep problems and to act as a sedative, but for the sufferer in the second testimony medication had a deleterious effect. The latter individual expressed some surprise that counselling or psychological therapy was not offered at the same time.
In contrast, in testimonies six, seven and eight, where the sufferers had received treatment more recently, there is a marked difference in the experience of services and provision of treatment (this includes the person with chronic PTSD). The sufferers in these testimonies praised a trusting and sympathetic relationship with healthcare professionals, well-delivered, effective psychological treatment and continuity of care.
3.2.4. Sufferers’ perspective on coping and recovery
Although PTSD sufferers can recover naturally in the first few weeks or months – and even years –after a traumatic event without treatment, all of the sufferers above expressed a need for some form of support and treatment, and made the connection between lack of support and treatment and a worsening of their symptoms.
Some of the sufferers found a way through the disorder by founding support groups with other people affected by the traumatic event. The person in the fourth testimony accredits this with being the ‘best intervention of all’. The person in the second testimony reduced and stopped his medication himself and started up a successful website dedicated to ex-service men and women suffering from PTSD. The person in the third testimony found her work helping others who had lost relatives in disasters enriching. The person in the first testimony speaks publicly about what happened to him, and finds that talking is the best means of coming to terms with the disorder. These strategies can be an important means of providing people with the self-confidence to return to work if they have lost their job as a result of PTSD.
These means of coping are also important milestones on the road to recovery. Testimonies six, seven and eight are stories of recovery, although some people will never completely come to terms with the trauma. They will learn to cope with it on a day-to-day basis, knowing that its effects will be with them for the rest of their life; others may find that with the passage of time and the right treatment they may be able to find some kind of equilibrium and quality of life returning; yet others may find that taking control of their own treatment and finding support from friends and family members will allow them to put some structure and meaning back into their life even if they still experience PTSD symptoms daily; others might be coping with the disorder but consider trying a different form of therapy.
As has already been suggested, PTSD can change a person irreversibly; and as the narrator of the second testimony understood it, recovery is a process, part of that process being learning to live with this change, moving to acceptance if that is possible.
