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

Treat the Past as a passing Visitor, not a Permanent House Guest

When the past comes knocking, I have some choices to make. I can ignore the knock on the door, or I can open the door and face it, or I can open the door, invite the past in and ask it to live with me. Each response will have its own consequences good and bad.

Too often I have lived with the past as a permanent house guest. It has lived in my mind with memories and waking dreams that keep the pain of past traumas alive. In a way, I helped it feel at home in my head, by engaging it in conversation, I thought I would be able to 'understand' my past and find reasons why and why not. Instead, it became comfortable and made itself at home. So much so, that I missed a lot of my present, simply because looking after my 'house guest' left me emotionally exhausted and unable to engage with the here and now.

As I have worked through the Dialectical Behaviour Therapy programme, the importance of the Core Mindfulness Module has become central to my letting go of the past and its hold on my life. It doesn't mean, that suddenly I don't have to deal with flashbacks or disturbing dreams, but it does mean that I don't have to let the memories and emotions from the past spoil my present.

When I get the inevitable knock at the door and I know it's the past lurking outside, I open the door, I acknowledge that the familiar visitor is there again. No longer, do I have to invite the past in, to make itself comfortable in my head. 'You shall not pass'! Having acknowledged that it's visited again, I close the door on it and return to my life as it is - in the present.

Here is a simple explanation of the What and How skills of basic Mindfulness:

Learning to keep your mind in the moment….

Stop Your Mind Racing… (WHAT skills you use…)

Observe

* Just NOTICE the experience – Don’t react, don’t analyse
* Have a TEFLON MIND – let thoughts, feelings and experiences just pass through your mind – don’t focus on them or hold on to them, let them SLIP AWAY
* Keep your FOCUS – don’t get distracted by thoughts or sounds or sights that take your attention away from what you are doing right now.
* Be ALERT and aware of every thought, feeling and action that come to your mind.
* WATCH your thoughts coming and going. Notice each feeling – as they come and go like waves. Notice exactly what you are doing.
* Use your SENSES – when your focus slips use one of them to bring you back to the here and now – ‘Stop and Smell the Roses’'Wake up and smell the Coffee!'.

Describe

o When you notice something – Put WORDS to the EXPERIENCE eg in your mind say ‘I’m feeling sad’…. Or ‘my stomach muscles are tightening’… or ‘I’m thinking I can’t do this…or ‘I’m walking one step at a time…’
o PUT YOUR EXPERIENCE INTO WORDS – as if you were commentating on what is going on. Don’t analyse or criticise.

Participate

o COMPLETELY LOSE YOURSELF IN THE MOMENT – get involved in the here and now. For example, Don't just listen to the music, really enjoy it and when the urge comes over you, dance - madly, badly and with your whole body committed to the experience.
o GO WITH THE FLOW – dance to the music, sing along, whatever is needed in the here and now.
o Actively PRACTICE your new skills
(see previous post: http://bpdlifeinthemoment.blogspot.co.uk/2014/02/you-mean-i-have-to-keep-going-with-all.html)

‘Taking every thought captive….’ (HOW you use your skills….)

NON-JUDGEMENTALLY
• See but DON’T EVALUATE. Stick to the facts. Don’t think about ‘good’ and ‘bad’, or ‘should’ or ‘shouldn’t’
• UNGLUE YOUR OPINIONS FROM THE FACTS
• ACCEPT each moment as it is
• ACKNOWLEDGE both the helpful/wholesome around you and also acknowledge what is negative/harmful.
• DON’T JUDGE YOURSELF

ONE-MINDFULLY
• DO ONE THING AT A TIME – When you are eating: eat. When you are walking: walk.
• LET GO OF DISTRACTIONS – if your thoughts or feelings distract you from what you are doing, let them go and go back to what you were doing – and keep doing it again and again.
• CONCENTRATE YOUR MIND – don’t multi-task, if you find you are trying to do two things at once, stop and go back focus on doing one thing at a time.

EFFECTIVELY
• FOCUS ON WHAT WORKS – do what needs to be done in each situation.
• PLAY BY THE RULES – don’t cut your nose off to spite your face.
• BE AS SKILLFUL AS YOU CAN – in the situation you are actually in.
• BE AWARE OF WHAT YOUR OBJECTIVE IS – do what is necessary to achieve them
• LET GO OF ALL THE NEGATIVES THAT HURT YOU AND DON’T WORK IN THE SITUATION AS IT IS. 

Tell the past where to go and remember:

The Past is History
The Future is a Mystery
Right now is a gift, which is why it's called the Present.

BPD Blessing or Curse?

I love detective shows. One of my favourites is Wallander. He struggled with an illness for most of the first series before reaching crisis point and finally being diagnosed. Now, the exact name escapes me, but his diagnosis both troubled him and made him laugh as it was called something like 'blob'. Each time he told someone his news and the name of his 'diagnosis' he both laughed and took the opportunity to explain what he understood of his condition and how this would affect his life in the future.

If only Mental Health diagnoses were as simple as Wallander's 'blob'. I have a friend who thinks that I shouldn't be as comfortable with my diagnosis of Borderline Personality Disorder with co-morbidity of Clinical Depression as I am. He feels that the word 'disorder' is an insult to me and the stigma of the diagnosis will hinder me rather than help me.

I understand his reservations and I have, as a professional, encountered the assumptions prevalent in some areas that this is not a treatable condition,that those of us who exhibit 'emotional sensitivity' to the extent that we require intervention, are among the most difficult of service users and that we absorb more resources than is warranted. In short, I have heard BPD sufferers described as 'manipulative', 'difficult', 'emotionally blackmailing' and 'highly volatile', by fellow professionals when working in the Criminal Justice System. Unfortunately, the most prejudiced views came from colleagues within Mental Health teams who sought to distance themselves from managing 'these people' and kept telling us that the anti-social behaviour displayed by some BPD offenders was a 'criminal justice' problem and one that had no answer within the psychiatric or psychological community. Then slowly, just before my own diagnosis in 2009, whispers began of a 'treatment'(Dialectical Behaviour Therapy) available for BPD which began in America. Suddenly, this has become a diagnosis with hope for management if not cure. However, I wonder if the optimism of those working within DBT has communicated itself to other medical professionals who have limited contact with BPD or DBT?

Some observations of me and my 'diagnosis'.

1. Although the title 'Borderline Personality Disorder' indicates that I have a fundamental flaw in my very being I don't see it as such, but as a failure of language and semantics to adequately explain complex emotional distress and its impact on my ability to live a fulfilled life.

2. The reality of resource allocation determines that resources follow need and risk. If a nomenclature encapsulates a cluster of symptoms which are shared among a significant group using local resources, then it follows that it is easier to identify the need for those resources to be directed towards treatment of 'blob' or 'BPD', whichever is most convenient to refer to at the time - this one is for the bean counters! For good or ill, for the sake of the accountants we all need to be fitted into neat little boxes that can be counted!!

3. What is important about BPD is the relatively recent acceptance in certain areas that there are treatments available to help 'sufferers' (for want of a better word) manage the worst symptoms of emotional dysfunction.

4. I am lucky to live in a postcode which quickly established an intensive DBT programme lasting nearly two years, with adequate aftercare and staff willing to see beyond labels and perceived 'difficult behaviour'.

5. Despite the name of my 'disorder' I am not BPD - I am an individual with a large number of characteristics - some of which make me more susceptible to certain emotional struggles - some of which provide an inner core of strength which allows me to make the most of the treatment offered to me.

6. There is a reality about a significant proportion of mental illness, which clearly links to significant trauma in childhood. Too often the question asked by practitioners has been 'what's wrong with this person?' rather than 'what has happened to this person to make them react to life in this way?'

The willingness of DBT therapists to ask this question, to listen to the answer and to acknowledge that my previous ways of coping with life were understandable in the light of the answer, is one of the keys to the success of this programme in helping me manage patterns of emotional dysfunction which had lasted over 30 years.

For me BPD is not a diagnosis of stigma - that is other people's problem. It has given me clarity about what had been an undefined pattern of self destructive behaviour. Like the label or not it has opened the door to hope of moving forward with my life.

My 'Special Button'

I have a button, it is well hidden and I can live for years without even being aware of its existence. I call it my 'Self Destruct Default' Button. It is not driven by any suicidal impulses or self harming behaviours which are part of my Borderline Personality Disorder. It is, however, just as destructive in many ways, because it springs from the same source - my inability to value myself.

It starts to pulse - red - when things are going really well. When there are no crises in my life that require all of my emotional energy. When I am, for want of a better word, in danger of becoming 'happy' in my life. I have pressed this button many times in my life - provoking the breakdown of relationships (see I told you, it's not possible to love me), loss of jobs (See I told you I am a failure) and usually, as a result, the loss of my home (see I told you I wasn't worth helping - wasted resources).

I managed to do this every five years or so and kept repeating the pattern between the ages of 18 and 42, when I finally ground to a halt and found a GP willing to put the pieces together and see the full picture. My diagnosis, although a shock at first, opened doors of understanding for me after a lifetime of feeling that I was just 'over-sensitive' and losing a grip on reality.

I find myself in danger of reverting to my 'default' having completed the core Dialectical Behaviour Therapy course and realising that I have been 'stable' for a number of months. I know it is worth getting used to enjoying life as others do, but there is a core belief that I am not worth it. This I know, is the fundamental battle I have with my past experience of life. Everything up to the present period of my life has been designed to programme me to believe that 'self destruction' is safer than taking a risk with life as it is outside my experience.

But there is hope - if my life so far has programmed my default, it can be reprogrammed to a different default - one that says, this moment is as it is. To believe that my emotions do not have to rule my life, that at their worst they build to painful crescendos, but they do subside, if I am willing to wait for one moment more.

So I am looking at creating a new button to become my default and on it is written: 'Hope'.

Who to Tell? What to Tell?

I believe firmly in the importance of the 'Time to Change', 'Time to Talk' campaigns run by Mind, Sane and other mental health charities. I know that the best challenge to Mental Health stigma is for people like me to be open about my diagnosis. But there is a caveat -

sometimes discretion and self preservation are needed

simply because even those closest to us, just don't get it.

I have found it easier to tell those who are distanced from me - the 'strangers' in my life, if you like, that I have Borderline Personality Disorder. a) Because I was not invested emotionally in their reactions to me and b) because they were not invested in keeping me in roles that didn't help me.

I have encountered a number of reactions:

1) The first person I told was my Line Manager immediately following the second or third assessment when Mental Health staff started to discuss my BPD symptoms. Despite her lack of knowledge (and, indeed my own!) she was consistently supportive and was keen to listen and learn with me about what my condition would mean for my remaining in post as a Probation Officer. In the end I took voluntary redundancy due to the realisation that my challenging caseload was not helpful to me in seeking manage my emotion dysregulation. She even supported me when a Senior Manager insisted on expensive assessments by privately funded Psychiatrists whose sole aim was to assess my risk of physical harm to my cases - the vast majority of whom were violent and dangerous male offenders! Three times the response came back 'no, the highest risk of BPD is of suicide and self harm'!! and still Senior Management sought to prove that I was suddenly a risk to others, having worked successfully in that office for seven years! However, my own instability meant that I knew it was best for me and my cases if I moved on. On leaving my career behind my Manager left me with a positive professional regard which I am slowly able to take on board and use to move into a future career - just don't know what it is yet.

2) Telling my family is problematic - I can never tell my parents. Growing up even physical illness was dismissed - certainly no room for compassion for mental illness. Ask my brother who suffers from chronic severe Asthma and who was told that his attacks were just due to him being 'highly strung'. Instead of opening myself up to reinforcing negative statements and parental rejection, I have been living a lie with my parents since I was diagnosed. They know I have a condition which requires me to have given up my job and to attend therapy twice a week for the past year (Dialectical Behaviour Therapy - DBT), but beyond that I cannot share with them. Sometimes accepting that I will never change them or their views stops me from suffering further at their hands.

3) The rest of my family - I have received nothing but support and love from my brother and his wife. They have read up on the websites and books I have recommended and have recently supported me in speaking publicly about my experiences to small groups. Their children have now grown up with me as their auntie who gets very down at times but will always be the person they have known and loved since they were little.

4) Speaking in public about my experiences has shown me that there are so many people hungry to hear that they are not alone.

I hope that as I articulate my own experiences they will resonate with others - I know I really appreciate the Twitter community of those who have BPD and who have been helped by DBT - it reminds me every day that they have come through and are leading stable rewarding lives. (esp @HealingFromBPD and @DBTPath - thanks guys)