Borderline Personality Disorder - Diagnosis Hopeful or Hopeless?

Trigger Warning: this post mentions symptoms of suicidal feelings and self harm, if you are affected please give it a miss

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.

Ultimately, my diagnosis is so misrepresented and misunderstood that it gives me many opportunities to explain that Mental Health conditions have numerous causes and therefore numerous responses. BPD has allowed me to speak to lots of different people about the need to talk about Mental Health issues and to provide at least one person who they can talk to openly about how it is to live with a complex long term mental health condition. A label is helpful insofar as it helps me and those treating me to decide on a direction of travel towards recovery.

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

Taking off the Training Wheels

I've never liked endings. That's because I've always been very bad at them. In the past, due to the 'push-me, pull-you' emotions of BPD I'd never managed to maintain any relationship for longer than three years. So when my CPN and DBT Therapist are giving me actual dates for 'discharge' my natural suspicion of my ability to cope raises its ugly head. Especially as I started working with my CPN in 2010.

It's not that this is a shock. After all, from day one on DBT they prepare you for life after DBT and emphasise the fact that the therapy will end. The problem is that most of my endings in my life have been accompanied by some form of relationship, or other, trauma. To be honest, one of things I am getting used to is the lack of trauma in this ending. I mean, suddenly I am aware that I am coping better with all sorts of new experiences - stable friendships and lack of crisis in my family relationships. Or should I say, I am not allowing my emotions about these relationships to overwhelm me - one result of the DBT skills I have learned and practised over the past 18 months.

I still have anxiety about the future - will I ever be employable? When treatment ends, will I continue with my recovery? How do I cope with the realisation that some very key relationships with my CPN and Therapist are ending? I'm bound to have anxieties because I have never travelled this road before and certainly never been equipped with the tools to manage my overwhelming responses to the world before.

What I have learned is 'do not worry about tomorrow, because today has enough troubles of its own' (Matthew Chap 6 v 34 The Sermon on the Mount). Rather than racing ahead in anticipation of everything coming crashing in round my ears, as it has so many times in the past, I have learned to accept each day as it is right now. It has included ups AND downs over the past 18 months. Treatment has not changed my life into an amazingly problem or crisis free road.

Rather, I have changed, I have learned not to trust the extremes of my thoughts and feelings - the Black and White thinking symptomatic of BPD. I now check out some of my knee jerk reactions to life and have moved from the rocking to and fro of a small boat tossed about in stormy seas, to being able to wait for the storm to pass, as I have learned that both thoughts and emotions come and go. The most important thing I have learned about my feelings is that they won't kill me, no matter how intensely I feel them. I have also learned that my thoughts and feelings, alone are not reliable enough to build my life responses and choices on. As the serenity prayer says: 'Lord, grant me the serenity to accept the things I cannot change. The Courage to change the things I can and the wisdom to know the difference.' This is a summary of the DBT skills I have learned. Learning to manage BPD depends on a balance between acceptance and change. Acceptance of the things that are an essential part of my experience and character. Ability to change those things which are in my power to change in my response to my environment and relationships.

Given that it is over a year since I last self harmed, I have been managing my BPD with the skills I have learned. The training wheels came off a long time ago. My therapist has been coaching me from alongside, having pushed me off to balance on my own some time ago. The problem at the moment is that the impending end date has made me suddenly aware that I am moving forward with only myself and my new skills to keep me balanced. Wobble I may well do, but I am moving forward and, (to carry the bike riding analogy to breaking point), as long as I am moving forward I will keep my balance and I am unlikely to fall off. However, I have also learned that even if I do fall, it is not the end of the journey. I can pick myself up and continue on my way.

So...That was Then...This is Now...

I started writing this blog in 2010 - still reeling from finding out that my 'emotional issues' since childhood had a name and could be understood beyond my being 'oversensitive', 'overdramatic' and 'overstimulated' (amazing what comes out of angry confrontations!).

It has taken me three years to adjust to a diagnosis of BPD with a lovely side order of severe Clinical Depression. It took until the age of 42 and numerous periods of: instability, breakdown (of self and relationships), relocation and rebuilding to find that my life patterns had a cause and some hope of a remedy.

I am forever grateful to the CPN (still with me after all these years - possibly the longest adult relationship I've managed to maintain longer than three years) who saw through my 'apparent competence' and my 'high functionality' to see that I was screaming out for help. Patterns of Self Harm and risk of suicide associated with BPD distract some professionals from listening to the pain being expressed. I used to describe myself as being 'trapped inside my own head, screaming'!

For me no one knew that I self harmed (I was working with cases who tended to have the same patterns of self abuse and emotional stability as I was experiencing). My professionalism was a dam holding back the torrents of emotional distress tumbling around inside me. My biggest fear was losing my job, my raison d'etre, the only effective means of self validation I had at the time. So I knew that admitting that I had made detailed plans to end my life ironically, was the last thing I wanted to do. But in an assessment, begged for by my GP who fought so hard for people to look beyond the surface, for the first time someone asked me directly how far I had gone in planning to commit suicide - suddenly it was ok to let it all out and my life as I knew it came to a juddering halt...in time for people to recognise how much emotional distress I was experiencing. The mask was off and it was all there for anyone who cared to look to see.

Some of the most comforting words spoken to me around this time were - 'your response is understandable', 'it's ok to feel low' - I was allowed to struggle due to my previous experience of life. At that time suicide seemed like an answer to unbearable emotional pain, but to quote Tyrion Lannister from Game of Thrones 'Death is so very final'.

At the moment, I am attending a DBT graduate group - just like that! 14 months of DBT Skills Group and individual therapy have flown by and I recognise that I have come a long way since my juddering halt...so much learning has happened. One of the most freeing realisations has been that although I may be a product of my past, I don't have to remain as its prisoner! It is exceptionally freeing to recognise that the 'solutions' to my emotional pain, no longer have to be so final. Today, I am learning to accept each moment, with all its feelings, good or bad, while changing what can be changed in me.