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

Does being Competent at your Job Whilst being BPD confuse your Employers?

For many years I worked successfully in a highly responsible and challenging job. Then, in 2009 I was diagnosed with Borderline Personality Disorder. My caseload included a number of clients who were classed as MDOs (Mentally Disordered Offenders). In seeking to secure psychiatric interventions, rather than imprisonment for many of my BPD cases I was disheartened to receive the repeated response, 'this condition is not treatable' and in one particular case '....is so problematic to handle that they are barred from A&E admission in the local area'. The provisions of the Mental Health Act 2007 had failed to make it to the Foundation Trust in which I worked. So, when I received confirmation that I had BPD and that my local NHS Trust were willing to offer me support and treatment I knew I was lucky. I also had a decision to make about staying in work and what I would tell my employers.

I decided that I would be open and honest with my employers about the nature of my ‘issues’. Given that I had taken time off since 2007, as I struggled with what then was an unknown problem, I believed that this would be the most productive way forward. I had had experience of trying to mask periods of emotional instability from previous employers – helped, no doubt by the fogginess of medical professionals, who seemed to believe that my ability to hold down responsible jobs meant that I couldn’t possibly be suffering from a complex mental health condition.

As I have said elsewhere in this blog, I had always been open with my Line Manager throughout the period of uncertainty about my diagnosis to the final conclusion and have found that, on an individual level both my manager and my colleagues were willing to learn and try to understand my condition and how it affected my work.

However, the sickness absence procedures themselves were applied as a ‘one size fits all’ solution to long term sickness, regardless of the intrinsic differences between physical and mental illnesses.

I don’t think a Senior Manager would ask of a Cancer sufferer, ‘A year ago you told us the 'Chemo' would work, so why have you gone off again and are now telling us that you need Radiotherapy?’ Unfortunately, having remained at work for 8 months following a difficult period, when my initial treatment failed, I was signed off again in 2011 and I was asked by the senior manager why the first treatment I had tried had not worked and was asked ‘what guarantee do we have that the new treatment they are suggesting will work and that you will not be signed off again?’

Now correct me if I’m wrong, but even the most highly regarded medical training does not include crystal ball reading, I believe that’s only on offer at Hogwarts! However such questions betray an underlying suspicion, or even prejudice, about mental illness, and that is: it’s all in my head! If you don’t fit neatly into the procedures, which again and again, I was told were there to support me to remain in work, then employers seem to waver between wanting to help, and threatening me with capability procedures. In the end it became impossible for me to remain in work, even on a part-time basis and engage in the intensive DBT programme I was offered a place on. I took voluntary redundancy in 2012 - the first wave of redundancies which have marked the dismantling of the Probation Service as a public service agency serving the community. I will therefore not be able to return to any role which would make direct use of my skills and experience, but that's another day and another story.

So can such Sickness Absence procecures deal with the paradox of the worker with mental illness whose work is characterised as ‘excellent’?. In the present climate the pressure not to disclose mental health issues will grow, but how can we educate employers to view those with mental health problems in the same way that they view physical health problems? With the same level of compassion and support?