Justice and Hope Part 3
You can watch the video of this blog at https://youtu.be/axEFg6rPR2c
Watch the BBC NI Interview at https://www.bbc.co.uk/news/av/uk-northern-ireland-58800716 and https://www.bbc.co.uk/news/uk-northern-ireland-58800710 Please note: Although my therapist worked as a Psychiatrist, she now works as an EMDR Consultant
The following 3-part blog arose after agreeing to be interviewed about my experiences of receiving Electroconvulsive Therapy (ECT) by the BBC NI. The purpose is to share my views, experiences and questions arising from facing the reality that I had received ECT on far more occasions than I remembered. I have also since, received some of my records which had been requested because of my sketchy memory. These validated issues I have raised through my work but were quite challenging and at times distressing to read. This is a bog-standard reflection of my thoughts on ECT and the system in which it was delivered as I try to make sense of my own journey through mental health services. It has helped me take what felt overwhelming and ‘too big’ and translate it into a narrative which I hope will contribute to positive change. I have not tried to give all perspectives or reference multiple research papers. This is just my story. I intentionally refer to ‘the system’ and not individuals as I believe, in the most part, people wanted to help.
Part 3: Justice and Hope
Women, ECT and the Mental Health System
Trigger warning: suicide, self-harm, rape
Why are approximately 70% of people who get ECT women? One reason I assume is that more women than men suffer with major depression. Why is this? I’m sure there is research out there but, in this blog, I am just thinking out loud. The devastating prevalence of domestic violence, rape and murder and the unimaginable treatment of women in countries like Afghanistan has flooded the news this year and there is a palpable increase in outrage about violence against women and girls. Many organisations established in a patriarchy and based on misogynistic attitudes still hold some of these deeply entrenched beliefs. Male entitlement and privilege are still very real. Conviction rates for rape are lower than any other crime and we know that an overwhelming majority are committed by men.
The mental health system is no different. In the late nineteenth early twentieth century some of the reasons women were committed to asylums were not fulfilling wifely duties, reading novels, imaginary female troubles and studying. We’ve been labelled with hysteria and being demon possessed, burnt at the stake and sectioned, locked away and tortured for years in asylums. I am not a scholar in this area but there is plenty of literature which verifies this.
Despite the seemingly enlightened nature of the age we live in, I fear the current psychiatric system continues to silence and blame women in a more insidious but equally harmful way. Why do so many abused and traumatised women get the diagnosis of Borderline Personality Disorder (BPD)/Emotionally Unstable Personality Disorder (EUPD)? The symptoms and diagnostic criteria could apply to anyone with those experiences. This is a highly contentious diagnosis and sometimes referred to as a diagnosis of exclusion because of some very poor attitudes towards and treatment of people with this label. I talk about my many diagnoses in Part 2 of this 3-part blog and discuss how Complex Post Traumatic Stress and Dissociative Disorder were diagnosed. My question remains, why did it take so long for this to happen for me?
When I first saw a psychiatrist, was prescribed medication and diagnosed with major depression at age 14, we (and I mean the world over) were told that depression was caused by a chemical imbalance in the brain. Very convenient for the multibillion-dollar pharmaceutical industry. Some people still believe this to be true (*see reference at end). We do now know that trauma has a broad range of effects on brain structure and function and equally neuroplasticity means that there can be repair. Dr Bruce Perry, M.D., Ph.D states ‘Relationships are the agents of change and the most powerful therapy is human love’. He also says ‘Relationships matter: the currency for systemic change was trust, and trust comes through forming healthy working relationships. People, not programs, change people’. Separating mind and body, physical and emotional and ignoring the environments and conditions in which people live and work is absurd. I am simplifying a complex area but feel it is important to reference here.
I am going to share with you just one incident of many which I feel illustrates some of the issues and questions I’ve raised over all 3 blogs. In doing this my focus broadens. In March 2014, on a Sunday, I was raped and badly beaten. The day after I told my Community Psychiatric Nurse (CPN) who took me to The Rowan, a pioneering Sexual Assault Referral Centre for Northern Ireland. On the Tuesday I was interviewed by the police and after this I took a taxi, alone, to the psychiatric inpatient unit. I held a great deal of shame and self-blame. During my 7 weeks stay I went through two police video interviews, had to revisit the scene of the crime and had my injuries photographed at the police station. My marriage had broken up the year before, my family were all in South Africa and I had been dismissed from my job (understandably) due to years of poor mental health. My psychiatrist had written in 2013 in the report to the Occupational Health Doctor “limited prognosis for recovery”.
There were also the past untreated traumas, some of which services knew about, understandably triggered. Yet in my notes any self-harm or heightened distress was put down to my then diagnosis of EUPD. It was no wonder that I attempted suicide again and ended up in ICU on life support. I was readmitted to the inpatient unit for a week each between July and August during which time I had numerous visits to the Emergency Department (ED). Article 3 of the Human Rights Act 1998 is: Freedom from torture and inhumane or degrading treatment or punishment. I had mixed experiences in the ED but lack of privacy and dignity when getting stitched on my stomach and inner thigh alongside ignorant attitudes about self-harm, were re-traumatising. A doctor refused to give anaesthetic and I felt too ashamed and undeserving to ask. Needing internal and external stitching after waiting 6, 8, 10 hours to be seen, means the initial endorphins have well-worn off. Consequences like not being allowed out to see my son on his birthday because I had self-harmed the day before were enforced.
I was readmitted in September 2014 for nearly 10 weeks. My notes report I was apparently happy to get ECT again. Why wouldn’t I be? Anaesthetic provided momentary but desperately needed relief from what felt like unbearable madness in my head and deep despair and hopelessness in the core of me. There was little else being offered. I had been cycling in and out of hospital since 2009. Writing this I feel a mixture of disbelief, sorrow and anger. Trauma for me was about total powerlessness. A fear that I can’t begin to describe and a shame that permeated every cell in my being. What was so badly wrong with me that I had visited all these things upon myself? The mental health system reinforced how ‘wrong’ I was and took away my power with a doing to, medicalised approach. Yet I couldn’t survive without them. I was alone and confused. Desperate. I wanted to die but I also didn’t. The quantity and variety of drugs can only be described as a chemical lobotomy. It was hard to function. The ignorance in telling those on high doses of psychiatric medications to just eat healthily, exercise, take more ‘responsibility’ and get motivated … perhaps you should try functioning on the high doses I and many others have been on!
What troubles and saddens me is that staff were mostly kind to me. I know people who get their notes and are further damaged by the language used to describe them. I am fortunate that this was not the case in mine. I had the most committed and reliable CPN who I knew really cared. The shock in reading some of my notes was the very clear signs (which I’ve since learnt about) that I was traumatised and dissociated and it was not recognised. Year in and year out the same conversations were had, the medications changed and increased, and I drifted further and further away from life. I was slowly dying and no pill was going to fix that.
A man raped me. I pleaded for him to stop at one point. I thought he was going to murder me. By the end I wished he would. Another layer of trauma on top of many. It never got to Court but if it had, Article 10 of the MH (NI) Order 1986 would mean that I had a legal duty to declare that I had been detained (on a number of occasions). How would this have further discredited me as a witness to a crime with notoriously low conviction rates where myths abound? Where does my Human Right not to be discriminated against sit with this? As a woman and as someone who would be seen as having a disability?
Did I need an electric current penetrating my brain? For the fourth time in 4 years? Rendered powerless? Told to engage in some ‘positive thinking’?
I needed wrapped in a soft blanket with a warm mug of milk and reassured that I was safe and everything would be ok. I needed someone to teach me how to regulate. To calm my overloaded nervous system. To explain that my responses were completely normal in the light of what had happened. That although it didn’t feel like it, with the right support it wouldn’t always feel like this. To be reassured that it was normal for past traumas to be triggered but I wouldn’t be walking alone on this journey. These things can only happen IN relationship where people understand the impact of trauma and aren’t afraid to show up with their own humanity. I was “relatively well” when I began seeing my therapist last year. But I needed, and continue to need, her and others teaching and reminding me of how to return my nervous system to safe and connected. It takes time, practice and consistent support and repetition. We all need this to varying degrees. Our organisations need to be trauma informed and responsive for everyone. How do we expect dysregulated staff to support dysregulated, distressed people? (see appendix 1 below)
The challenge is that unless people can afford private therapy the number of therapy sessions (where they are even offered) are usually hopelessly inadequate. This can cause further harm. And too often there are no options or choices for what that therapy will be. What I needed could be different for the next person. Yet we offer people a ‘therapy’ for a limited time and when they inconveniently don’t ‘get better’, the blame and shame is reinforced and the problem once more located within the individual. The individual is only one cog in a larger wheel. Person-centred care? Yes, I needed to take ownership of my healing and put in the work. But what were the options and choices at the time and what were my social circumstances and history? Building trust takes time, especially when at the centre of traumatic events is betrayal of the most devastating kind. Recognising and believing in the inherent strengths within each person is so important. Holding hope. When nurtured and gently tended to it can grow and flourish. A quality and meaningful life needs defined by the individual. It doesn’t necessarily mean the absence of challenges or ‘symptoms’ but what are the standards we set? A report at the end of that horrific year stated that ‘I had a history of poor coping skills’. What I had a history of was abuses perpetrated against me. I wasn’t ‘disordered’, what happened to me was. We need to stop blaming, shaming and labelling people.
Getting access to the right help in a timely manner is only one part of the puzzle. Therapy isn’t for everyone and some people find peer groups amongst other things most helpful. What I do believe is there needs to be a focus on building more connected, cohesive communities. Communities (in all their forms) who have autonomy to collectively decide what they need and how best to make it accessible. Government needs held to account for funding without all the conditions, legalities, fear of relinquishing power and mistrust which create such barriers. Where do we hope to be in ten, twenty years? The current system is unsustainable. Relationships heal and change lives. Building our tribes in such a way that we can feel safe and a true sense of belonging, accepted and connected as we are, is so needed.
Healing is a journey. Quite extraordinary in many ways. Also painful and really hard work. I have been learning to see the world through a new lens and as I grow, so too does my curiosity. I share my experiences and thoughts but there are many and varied views and perspectives. Imagine if we could meet respectfully to really hear and learn from each other? My husband and I were reunited three years ago. He is my solid place. We laugh like those newly in love because we know how precious and fragile life is. I can hold my beautiful children close and feel and hear their hearts beating. They have learnt a kindness through these years and I am just so proud of the young adults they are growing into. I have a therapist who understands how the body remembers and the role and function of dissociation. She is teaching me, in a very human way, to find new ways of making sense of and telling my story. I am seen, heard and accepted in my totality. My friend walks alongside offering a space of grace and love where I can rest and laugh with abandon. I am slowly growing my business doing my hearts work.
I have been given another chance at life and for this I am so very grateful. It isn’t perfect. Who’s is? But I was lucky to get to the treatment centre in South Africa. My family chipping together so I could afford to go. Coming back and having the opportunity through the Recovery College to go back to the work I was always good at. To finally get the therapy which was right for me and good friends and colleagues in my life. Everybody deserves another chance at life. Everybody needs seen as the unique individual they are, not simply a diagnosis to be treated. I too can get stuck in all that is wrong. But when my focus changes to just the next step, it all seems more doable. Every encounter is an opportunity to make a difference, however small. What kind of difference will you make today?
*Reference: “The truth about antidepressants – What you need to know?” https://www.madintheuk.com/2021/10/open-letter-to-this-morning/
Bruce D. Perry, M.D., Ph.D https://www.bdperry.com
Appendix 1: What do I mean by trauma informed and responsive?
I refer to trauma informed and trauma responsive in these blogs but believe that this is a word we can bandy about with little context. When thinking about this I often refer to the work of Dr Karen Treisman, Clinical Psychologist, Trainer and Author who teaches about trauma informed organisational culture with the following principles and values in her book “A Treasure Box for Creating Trauma- Informed Organisations” Volume 1, 2021: “Safety and Trust; Relationships, Connections and Humanising Services; Curiosity, Reflectiveness, Empathy, Compassion, and Understanding; Strengths, Hope, and Resilience; Cultural Humility and Responsiveness; Agency, Mastery, Choice, and Voice; Communication, Collaboration, and Transparency.” Dr Treisman also covers the very broad spectrum of what is meant by trauma. Visit her website at https://www.safehandsthinkingminds.co.uk
These are the values and principles I refer to when using those terms. They were very much modelled in my relationship with the BBC NI journalist Niall McCracken. Given how much poor practice I have experienced when bringing my lived experience to various platforms, I felt it was a good opportunity to highlight what I believe to be good practice.
Appendix 2: Good practice: Trauma informed values and principles in action
I want to thank Niall for the way I felt he honoured trauma informed principles and values in many ways. At all points over the months that we spoke I remained in charge of what I chose to share and had the power to decide at any point if I no longer wanted to participate. I was given background information about the content of the piece and was kept updated on any progress regularly. Everything was clearly explained including the stages and way these pieces are progressed. Safety protocols were excellent in terms of ensuring I understood the extent that my information would be shared and the impact that this could have.
I felt my wellbeing, not ‘my story’ was the priority and valid enquiries were made for me to consider the impact on my family. This was not done in a paternalistic manner and Niall saw beyond what would be considered my complex history. This could have been seen as a risk and affected whether or not someone was willing to trust I was well and able enough to do this. Niall showed great humility in never presuming to know or understand in depth about some of the issues I raised. He was open to learning and really listened. He did not shy away from difficult conversations but asked questions with sensitivity. I knew he really cared about the issue and the people affected. I felt heard and that my perspectives and what was important to me mattered. Whatever BBC NI legal responsibilities are, it was the way in which Niall conducted himself and his genuine concern and interest that made me feel safe and able to trust him with something so deeply personal to me. How we are with people speaks volumes.