Someone asked me the other day if I found my diagnosis a help or a problem? It's an interesting question to ask and answer, especially when I consider that (possibly with the exception of Sexually Transmitted Infections) no physical diagnosis carries with it the same level of judgement and/or stigma as most Mental Health conditions.
BPD is a label, which, I have discovered since my own diagnosis, carries with it a whole heap of historical issues and assumptions.
Firstly, it has suffered from going through a long period during which it was considered to be 'untreatable'. Among some professionals it seems that this situation has not moved forward, judging from ongoing issues that people with the condition still report in finding support and help from services during crisis periods. This is despite clear pathways being published by NICE and the Mental Health Act 2007 declaring that BPD should no longer be 'a diagnosis' of exclusion.
Secondly, it is problematic to pin down and explain how a diagnosis has been arrived at. This is simply because to fulfil a diagnosis of BPD a sufferer needs to show issues in five major areas, up to a maximum of nine symptom clusters - someone has estimated that this means there are a possible 256 individual symptoms which could indicate a diagnosis of BPD. This has meant that there is much scope for debate among Mental Health professionals.
Thirdly, many service users do not like the label BPD because they feel that Mental Health professionals view this patient group as exceptionally problematic to manage. I don't want someone to look at my file before they meet me and decide that I am going to cause them problems. I am a complex person, my mental health issues are complex and have long standing complex roots. My mood changes are volatile and can switch immensely in the period of time usually allocated for therapy sessions. It takes a special kind of understanding to sit with the kind of emotional distress I often express and help me to work through those emotions to a point where I can feel hopeful. I am grateful for professionals working with BPD as a specialism who have treated me with acceptance and understanding. Above all, although I may have the same label as someone else and that helps to decide upon a course of action to take to help me, my needs are my own and more than clinical processes, I need someone to listen to me, help me to sit with my emotional pain and, ultimately teach me the skills I need to manage my condition in the long term.
Most people who dislike the diagnosis of BPD dislike it because it essentially labels my whole person as being 'defective'. For me, terms like 'emotionally sensitive', or 'emotionally dysregulated' are more helpful in some ways, except they fail to capture the all pervasive nature of the emotional and psychological distress experienced by me.So I'm left with BPD as a label that works for me as a shorthand when people ask me what my 'problem' is.
I was only diagnosed in my early forties, having been treated on and off for vague ‘stress related’ breakdowns associated with Clinical Depression. Having had my first encounter with mental health services in school, aged 16, I considered myself as someone who was susceptible to depression. No one managed to ask any questions that opened up symptoms around suicidal feelings and self- harm, so I kept that ‘sort of thing’ to myself. Besides, usually after about six to nine months on an anti-depressant I would ‘recover’ and literally restart my life. Different location, different career brand new relationships(because as part of my ‘depressive episodes’ I would have burnt all my bridges).
When I was finally diagnosed with BPD in 2009 I was relieved. The patterns of collapse and recovery had quite literally left me burnt out and bereft of all sense of who I was, with no sense of being able to experience emotion of any kind. My GP increased and changed my anti-depressants on three occasions. I was referred to the Graduate Mental Health worker at the practice. To her credit she quickly discerned that six weeks of brief CBT was not going to touch the issues she had brought out as she asked strategic questions and then, listened. My GP too listened, not just to what my symptoms were, but how I felt I was being affected as a person by my emotional and mental turmoil.
Thankfully, her intervention in pushing me forward for assessment by the Community Mental Health Team, paid off when I was assessed by someone who did not take my ‘high functionality’ at face value. She has been my CPN since 2009 and this therapeutic relationship has been crucial to my engagement in treatment and the beginning of my road to recovery. Because of the chain of care I experienced my view of my diagnosis has been largely positive. I know that for many people with BPD this level of continuity and understanding has not been there and so they have experienced the diagnosis negatively. I know I have been blessed by the quality of care I have received.
I think one of the most important discoveries of my life after diagnosis was the work of Marsha Linehan. The fact someone explained the reasons for my condition that made sense to me, and not only that, but showed real empathy and then offered a means of hope through DBT, helped me to feel that I could find a path to managing my BPD. One year after reading her initial book introducing DBT, a programme was introduced in my local NHS Trust.
Someone out there actually seemed to be able to make sense of the mass of thoughts and emotions which unspooled like unwound wool in my head. She explained how it felt to be me and she also showed that she kept her promises - trust in the therapeutic relationships is critical to the success of DBT. It has been the key to my being able to manage my BPD symptoms over the past two years:
‘People with BPD are like people with 3rd degree burns ...Lacking emotional skin, they feel agony at the slightest touch or movement.’ – Marsha Linehan
“I was in hell. And I made a vow: when I get out, I’m going to come back and get others out of here.” — Marsha Linehan
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