Recently, I have had the opportunity as a volunteer with lived experience to work alongside staff in a number of co-production projects. Along with the positive I have also had a glimpse at some of the more negative assumptions made about people with a diagnosis of Emotionally Sensitive Personality Disorder, ESPD (also previously known as Borderline Personality Disorder, BPD). Since I was diagnosed seven years ago, I've encountered sudden changes in relationships and friendships, based on ignorance and fear of the label. I have not experienced stigma from professionals who worked directly with me, although many with whom I have shared my treatment journey have told me their own stories of being treated as a 'headache', 'a problem patient', 'manipulative', 'difficult'. I did encounter these attitudes following my diagnosis being added to my medical history, mostly from those in the periphery of my journey, GPs, some A&E staff, those treating me for physical illness.
There is an unspoken expectation that I will be time consuming, difficult and, ultimately that I will not able to be 'boxed off' and 'sorted' by the time my intervention has ended. On reflection I know this does not reflect the compassion of the majority of professionals, but more reflects the lack of ability of the systems and organisation to deal with human beings who have seemingly intractable and complex needs. Our systems are more and more built around outcomes which can be measured and when I present with a complex web of biological and social needs, I mess up the system.
I've spent some time reflecting on the disconnect between the move from 'untreatable' to 'treatable' under the Mental Health Act 2007 and the frustration evident in eye rolling exasperation I can detect in some professionals.
At my worst I could never feel I belonged anywhere. At my worst my emotional pain was so searing and real it felt as if I were walking around with my sternum cracked open. As if it exposed every nerve in my body, pulsing in pain with each beat of my heart so that it felt as if the mere presence of another human in my personal space became unbearable. The core of these feelings centre on a void within which no person could fill.
The sense of helplessness this evokes in those who seek to show me love, often leads to the ultimate breakdown of the relationship as my see-sawing emotions create unending storms. For the person on the receiving end, this see-saw goes from 'love me', to 'I hate you', 'I knew you couldn't love me'. The intensity of loving me can be satisfying for a short time, until the void within swallows every ounce of emotional energy you have to give - many of my relationships ended because of the need of self preservation.
The pressures on the professional working with PD sufferers cannot be easily resolved by an end to the relationship. Indeed, there is a contract, mostly unspoken which says, 'but you can't abandon me, it's your job to care'. I believe from my own observation and experience of positive therapeutic relationships that this is at the heart of the exasperation of many professionals. No individual can possibly remove or fill the void and lack of self which underlies so much of my emotional dysfunction. I have seen the discussions between different agencies who step in to help, or more accurately rescue. After all, when all else fails and I am in so much emotional pain and feel that no one is listening I can always call 999. Police, A&E scoop me up and remove me from all responsibility for managing the void within. I am helped to rest with drugs, I am kept safe by restrictions placed upon me. The reality is that the emptiness remains when the drugs wear off and therefore it becomes a battle to return me to my everyday life.
Where Dialectical Behaviour Therapy (DBT) is different from other interventions is where it asks about my whole life. I need to find an answer to the void within. No one can reach into it for me. For me, meaning and hope come from a personal faith, which helps me to anchor my recovery in a belief that my life has purpose. The challenge for any professional is that the essential question is 'what does a life worth living look like to you?' and means that there is a need to listen to and explore with each individual how they find hope and meaning.
I believe the word 'holistic' is one of those trend words in psychology or medicine which we throw around without exploring to an effective degree what it means in practice. Traditionally, in my experience therapies focus on either my physiology, or my emotions, or thoughts, or all of the above. To be truly holistic we need to look at the core of our being, some would look to spirituality, others might focus on the sense of soul inherent in human relationships. Whatever, when looking at what has worked for me in DBT the difference was in helping me to accept the existence of the void within, whilst encouraging me towards finding out where I could find a sense of belonging and of purpose.
When I consider all of this it is hardly surprising that our longstanding systems and pathways don't fit the needs of the PD sufferer. So we become the 'problem patient', the awkward one that can't be 'treated and streeted'. In essence, though I think there is a need for a different approach for ESPD due to the all pervasive emptiness. I would also say that due to the impact of Mental Illness in general on our physical and spiritual well-being maybe a truly holistic approach to our therapeutic interventions is necessary to help people to rebuild lives with meaning and hope.
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