An example of a broken system

According to Sedgwick (1994, p.10) and his interpretation of the words of Carl Jung, the analyst is “just as responsible for the cleanliness of his hands as the surgeon”, and a psychoanalyst could potentially contaminate the patient in treatment.

From my experience as a survivor of psychiatry this contamination, which I would say has personally resulted in iatrogenic harm, is just as likely to come from psychiatrists. I believe that all disciplines working in psychiatry should be aware of the impact they have on those who seek their help, so that we can prevent the harm that so many people experience under their control and power. 

My story of 26 years entrenched in a system that robbed me of my identity, personhood, autonomy, and dignity. The day after my 20th birthday I was admitted to a psychiatric hospital against my will (my first admission was not against my will) after expressing my existential despair. Within days I was taking ‘antipsychotic’ drugs having given no information whatsoever about them.  This was the beginning of my journey as a guinea pig in the hands of psychiatry; however no one told me this then, or that psychiatry is not based on science but on mere opinion. Even the Chair of the DSM IV Committee, Dr Allen Frances, has described the manual as deeply flawed and scientifically unsound (Johnstone, 2014.)   

This is a list of all the psychiatric drugs that I can remember being prescribed in the 26 years I was a patient within psychiatric services: Thioridazine, Chlorpromazine, Quetiapine, Lithium, Sodium Valproate, Risperidone, Droperidol, Clozapine, Depixol, Clopixol, Haloperidol, Lorazepam, Diazepam, Temazepam, Fluoxetine, Clomipramine, Venlafaxine, Escitalopram, Dothiepin, Prothiaden, Amisulpride, Carbamazepine, Topiramate, Olanzapine, Mirtazapine, Trazodone, Zopiclone and Prozac. 28 medications in 26 years, and at times many of these in combination with each other. 

I was sectioned under the mental health act more times than I can recall but I do remember that the longest compulsory measures in the form of hospital and Community Treatment Orders lasted for 6 ½ years when I was in my 20s. During this time, I was persuaded into having ECT with no information about any potential consequences. I agreed to ECT because it meant after treatment, I was allowed to stay in my room for a few hours to sleep and as I was so low in mood, a few hours to shut myself away from the world seemed like a luxury.   

While in the psychiatric system I was restrained often, with extreme aggression, mostly by male staff who could not deal with any emotional distress, as was evident by their violent words. Extreme physical force was enacted on me while they dragged my trousers down to inject me with drugs. This was extremely degrading and retraumatizing and I still experience distress from the haunting memories.  

I was never and have never been a risk to others in any way that might have justified restraint (although no human being deserves to be treated in the manner that these restraints are carried out). If the restraint had been used to prevent someone else being harmed, I might be able to accept this now, but this was never part of my presentation. These actions were a response to my self harm and attempts to leave the hospital. The staff could not see this was a response to trauma and therefore their interventions just added to my distress. Many of these individuals were the ones who exhibited aggressive and hostile outbursts, despite me being the one who was given a label attributing these characteristics to my personality.  

They gave me many diagnoses over the years. Depression, Schizoaffective Disorder, Eating disorders, PTSD, Obsessive-Compulsive Disorder, Borderline Personality Disorder/Emotionally Unstable Personality Disorder, and Complex Trauma. The worst and most destructive one, due to the response others had towards it, was BPD/EUPD.

From being given a variety of labels, I have experienced different approaches to me depending on what the chosen diagnosis was at the time. This has proven to me that diagnostic overshadowing is clearly evident in practice. Thus, whatever ‘box’ I happened to be in determined how the staff related to me. Many clinicians had different opinions on what my diagnosis was. This shows that diagnoses are purely subjective opinion of a clinician. Even for those people who believe that giving a person a diagnosis can explain their style of relating or the difficulties they experience, I would argue that this leads to people making assumptions about a person based solely on their label. But if someone has been given many labels, what information does that really give to others? I would suggest that the use of a list of difficulties/symptoms that the person is experiencing could be truly individual and person-centred, and would allow people to hold onto their identity and autonomy. 

The inconsistencies in treatment confused the hell out of me! Here are a few examples:

‘You will always need medication and the hospital’ versus ‘Medication won’t help you and neither will hospital’. 

‘You have the capacity to make decisions – however, you are sectioned so you do not have capacity to make the decision to leave hospital’. 

‘You have insight’ versus ‘You do not have insight’. 

‘You know what works best for you, you know yourself better than I do, so what will help?’ – I tell them what helps and then they say: ‘No that won’t help you’. 

Would anyone not be confused by these contradictions? 

“When severely ill we tend to regress emotionally to earlier, more childlike levels of functioning and react to doctors or nurses as if they were parent figures from the past” (Bateman, Brown, and Pedder, 2000, P. 52). Now, I can see that I was often unconsciously seeking from this system. When a psychiatrist offered me psychiatric drugs or admission to hospital, I saw that as them acknowledging my pain, and I believed that I mattered as a human being and that they cared about me and were trying to help me. This led me to want more drugs at times, because it meant my pain was being recognised and attended to as a parent would with their child. As I was not conscious that I was seeking this attachment and nurturing from them, it could have been helpful if attachment theory had been explained to me. Furthermore, I was not told that these drugs would sedate my brain to the point I could not learn how to process what had happened to me in terms of attachment and sexual abuse. Instead, I became institutionalised, believing I needed them, and that they were helping. The weight gain from some of these drugs was extreme, particularly with Clozapine. I gained 10 stone in weight when I first began on this and lost it within 11 months of stopping. The stress this has put on my body, and any long-term damage is unknown, but I can imagine the potential effects. 

Another flaw in this system was their assumption that I have relationship difficulties. I would argue that most people would have relationship difficulties when someone in a position of authority exerts their power over them and leaves no room for choice or even negotiation. Perhaps it is more to do with how the professionals relate to and treat people that results in difficult relationships. Their assumptions also conflict with the fact that I have very healthy relationships away from their system, and have formed long-standing friendships and met supportive professionals from other backgrounds to the biomedical model. These relationships are based on honesty, compassion, and mutual respect. These people encouraged me to believe in myself and always reminded me of my strengths and potential. If only I had allowed myself to trust that these relationships were more beneficial in my recovery earlier than I did.  

When I finally did realise that psychiatry was doing more harm than I could endure, I drew on these healthy relationships which allowed me to realise that I was not the bad person that psychiatry and the ‘labels’ led me to believe. With this realisation I began to ask myself why I was going to them for help when all they did was hurt me and retraumatize me. Those healthy relationships enabled me to get to a point where I began to like things about myself, and I began telling myself that I was not going to allow psychiatry to they can hurt me more than they already had. I now knew I was worth more than that. Despite the number of times, I told them I only wanted to get well, which to me meant to be happy/contented and find meaning in my existence, and understanding why I felt the way I did, they never believed this. I knew from before I even entered psychiatric services that my attachment needs were and trauma rooted in my childhood, and I asked on multiple occasions for therapy to explore this which I was consistently denied. Again, after realising they were doing more harm than good and that they were not going to offer me the therapy I asked for when I entered their system, I started to wonder where else I could get the answers to these questions.  

The first thing I had to do was come off the drugs. At this point I had been on clozapine for many years and experienced extreme reactions when I stopped this on previous occasions. As I was on a low dose at this point, the reactions were not as severe, and it helped that the past experiences of withdrawal had let me know what to expect. I was ambivalent about psychiatric drugs for many years because of being unable to cope with the amount of activity in my thoughts when I discontinued them, which was frightening to me. This activity is likely no more than any other person experiences; however the contrast from being sedated for all those years to not being sedated was like night and day. Although this mind activity was frightening, I decided I must use it in a way that was going to benefit me, and I began to make art (I had abandoned my art when I entered the system, just as I had achieved my BA degree in Fine Art). The sedation of the medication also inhibited my creativity which up until that point had shown so much promise. 

Alongside my art, I did some research into attachment and trauma and started seeing a therapist outside of the NHS. I slowly began to understand these understandable normal reactions to multiple adverse abnormal childhood experiences, and my exploration of information and knowledge grew. My brain was working for the first time in years, and I felt like a child who had been let loose in a sweet shop. My thirst for knowledge and new alternative positions on prior epistemological positions was exhilarating. 

I was introduced to the book ‘The Body Keeps the Score’ (van der Kolk, 2015) by my therapist. This book was very difficult to read at times but very enlightening. I became aware of the book ‘A Straight Talking Introduction to the Power Threat Meaning Framework’ Boyle and Johnstone, 2020) and subsequently the group set up by Jo Watson, ‘A Disorder 4 Everyone’ and the associated Facebook site ‘Drop the Disorder!’ These have been extremely beneficial in helping me understand my experiences. The work of many other people has also been influential in my recovery such as Dr Joanna Moncrieff, Dr James Davies, Dr Gabor Mate, Dr RD Laing, the philosopher Michael Foucault, Dr Bruce Perry, Dr Karen Treisman, and many many others.  

I have been inspired by other survivors of psychiatry, some of whom I have had the wonderful opportunity of hearing at the poetry events organised by ‘A Disorder 4 Everyone’. I have also been moved by the presentations of family members of people who suffered at the hands of psychiatry and have made astonishing creative contributions, especially Ruth E Dixon in her wonderful poem ‘Madness Meds’. With all this learning I allowed myself to feel compassion for the little girl inside me and knew I was the one who could protect her now. In doing so I allowed myself to be angry at the injustices done to me in psychiatry and the contributing childhood factors to my emotional distress.   

I believe most of my childhood issues are rooted in inequalities related to social justice. Particularly for me, the implications that come from being from a so-called ‘lower’ socio-economic status involved bullying and othering by peers as well as by educational and health systems. My experience of intergenerational trauma which consisted of sexual abuse, attachment needs being unmet, and poverty, is more prevalent in those from a working-class background. I believe our current capitalist, patriarchal, dominant system does not support healthy growth and development for families that are less privileged. It has been shown that the strongest correlations found for ‘mental illness’ prevalence rates are not genetic inheritance, but inequality in societies (Wilkinson & Pickett, 2009.)  

All this new learning led to me feel that psychiatry had performed an act of epistemic injustice whereby I was led to believe I had an untreatable, flawed personality. Many others have and are still led to feel this way.  

How I challenged my most damaging diagnosis. 15 months ago, I took the step of writing to the head consultant psychiatrist of my health board requesting a review of my diagnosis. I sent a 17-page report on myself where I used the ICD 10 diagnostic criteria for EUPD and provided evidence from my life outside of the psychiatric system that contradicts this diagnosis. 

Nine months later this review had still not been carried out despite me reminding my consultant on the three occasions that I saw her. On each occasion she informed me that 15 volumes of notes take a long time to go through. So, 12 months later after my original letter, I wrote to her again requesting that she inform me of her findings at our next appointment and that I would be looking to be discharged at this time from their services. as any involvement with them was causing me too much distress and that I had a future to get on with. Last appointment – The Decision: ‘A historical diagnosis of EUPD of the Borderline type which is now in remission. The working diagnosis is now Complex Trauma’.

I had mixed feelings about my consultant’s conclusion (above), and I first asked what her justification was for a personality disorder when the ICD states that these patterns must be maladaptive and exist across personal and social situations, whereas as I had shown, I function very effectively in my personal and social situations, which involve responsible and effective ways of relating to people. She agreed that I have functioned throughout my emotional distress on a high level when away from services, but argued that when in hospital for long periods I was not interacting socially or personally with others and that was why she could justify a personality disorder. This seems a bit ridiculous to me, because would that not imply anyone who is in hospital for lengthy periods of time has a personality disorder?  

The psychiatrist acknowledged, when I challenged her about diagnostic overshadowing, that as psychiatrists they are aware that what they write in notes is only what they ‘think’ is happening. I responded with: ‘This is my point – you have 26 years of notes about me which are nothing to do with fact and only mere subjective opinion’. 

The other matter I could have contested was that she agreed there was no evidence of impulsivity in my notes. According to the ICD 10 you must demonstrate three of the impulsive traits of the EUPD diagnosis before you can then consider the borderline element. At this point however, I said to myself: ‘Don’t bother, let it go, if they can’t see, far less admit the flaws in their own profession, then that is their problem, not mine and I have wasted enough of my life on them.’ The consultant then referred to the Borderline part of the label as what she saw most consistently in my notes and said it was the most severe case she had seen and that it was quite unbelievable that I am who I am today. I had mixed feelings about her comment, and I responded by saying that these severe aspects you are referring to, many would say are also consistent with the complex trauma label. Although being referred to as the most severe she has seen could have been taken negatively, on the other hand it also gives me an opportunity to show that even those in the most extreme distress can and do find a way to flourish in their life. So: do not give up on people!

For me, having my trauma recognised meant a lot despite the professionals still pathologizing it. I guess in some ways this affirms Eleanor Longden’s (2013) words: ‘It shouldn’t be what’s wrong with you, it’s what happened to you’. This change in diagnosis brought a huge sense of letting go for me, and the doctor agreed to confirm her findings on discharge by means of a letter. I eagerly waited for the mail each day until I received it 3 weeks later, when my illusions were completely shattered. I have no idea how I expected anything different after the many years I had endured from this service. Yes, the letter stated I had a historical diagnosis of ‘Emotionally Unstable Personality Disorder of the Borderline Type’, and my diagnosis is now ‘Complex Trauma’. However, an additional factor had been added – it was ‘Emotionally Unstable Personality Traits!’, and apparently, we had both agreed on this at the final appointment. To say I was furious is an understatement, particularly as no part of our conversation involved ‘traits’ in any way whatsoever. I proceeded with a formal complaint which took all the strength I had at this stage. I was tired and drained with this ongoing dilemma; however, I knew I had to continue with this to offer some compassion for that little girl inside of me.  

More than 2 months on, I received an apology for the doctor’s ‘misunderstanding’ of me and not making herself understood. The ‘Emotionally Unstable Personality Traits’ has been removed and it was explained that this was meant in the way that we all have personality traits; there was no intention to pathologize me; and she does not see my personality traits as ‘disordered’.  It still seems unclear as to why she put this in the letter in the first place. However for me I now feel like it is final. To be rid of a label that has caused me so much harm and internalised stigma means I can begin to look ahead and begin to let go of the past. 

As a society we need to stop pathologizing people’s distress and start listening to their stories and I hope to be someone who will do a more humane and compassionate job of this as I am now training as a psychotherapist myself. I can imagine that not in a million years did anyone in that system think I would ever be able to get to a point where I was accepted onto a professional training course and do as well as I am.  

Bearing in mind David Sedgewick’s and Carl’s Jung’s words quoted at the beginning of this story, I will work on exploring my own experiences from my whole existence and always ensure that I am self-aware and do my very best not have a negative impact on anyone as so many did to me. If through my journey as a professional I make a mistake, I will own it and make efforts to repair and learn from it, rather than pathologize those who make us aware of our wrongdoings. I hope to work alongside the people who choose to engage in therapy with me, not seeing myself as an expert on another’s experience and always coming from a position of not knowing and curiosity, rather than one filled with assumptions from flawed diagnostic manuals. 

For those professionals who lose hope or belief in someone’s potential so that you view them as a ‘lost cause’, I urge you to revise your position. I believe my story to be one that highlights a need for change in approach towards not pathologizing emotional distress. I have managed to progress in my life despite being seen as ‘one of the most severe cases of borderline’ because I reached outside psychiatry for support to people who seen the whole of me and did not blame me for my distress. Surely this is example of a broken system that needs to change.  

There is certainly one thing I can thank psychiatry for and that it is for showing me ‘How not to treat people!’ 

References 

Boyle, M and Johnstone, L (2020) A straight talking introduction to the Power Threat Meaning Framework. PCCS Books 

Johnstone, L (2014) A straight-talking introduction to psychiatric diagnosis. PCCS Books. 

Sedgewick, D. (1994) The wounded healer: countertransference from a Jungian perspective.  Routledge. 

Bateman, A,. Brown, D. and Pedder, J. (2000) Introduction to psychotherapy: An outline of psychodynamic principles and practice. 3rd edn. Routledge. 

Longden, E. (2013) The voice in my head. Available at: https://www.youtube.com/watch?v=syjEN3peCJw&t=29s (Accessed: 5 September 2021). 

Van der Kolk, B (2015) The body keeps the score. Viking. 

Wilkinson, R and Pickett, K (2008). The spirit level. Allen Lane.