Time to Talk

I sat in my car, dumbstruck, wondering whether to just continue on to work, or if there was suddenly some seismic shift in me since I set out for my assessment appointment that morning. I had been struggling with Mental Health issues which I thought were related to the stress of my job for the past year. My Manager was aware that I might be suffering from bouts of depression. This, though felt really different, somehow I didn't feel as free to talk about 'Complex Mental Health Issues' with my employer. Instinctively, I knew that a label was going to change everything. And this one had a lot of baggage attached - Borderline Personality Disorder (BPD).

Being a creature of habit, I continued on to work and debriefed my Manager, deciding that both she and I were the same people we were the day before. I also decided to trust in the good sense I respected in her as a colleague working with challenging people. I was right. Together we wondered about the label and what it actually meant in practical terms for my job and me as a person. It is hard to find a good Manager, but when you do, really appreciate them. So hurdle one was over, I had told my employer that not only did I have a Mental Health problem, but it was one that I really was only beginning to learn about.

Unfortunately, the procedures in place and the attitude of the Senior Managers in charge of my area were not as compassionate about my diagnosis as the person most responsible for my day to day work. Suddenly, from being supportive the shift in sickness procedures became a focus on whether or not I was a risk to my cases. This shows a shocking lack of understanding of mental illness in general and BPD in particular. Again and again, I was referred to Occupational Health with the same questions, was I safe to be left alone with violent offenders? What impact was I likely to have on my colleagues? Sounds ridiculous seeing it in black and white, given that I had worked happily and effectively for the same team for over five years. Amazing that suddenly, I was the risk to be assessed, rather be the assessor of risk which was one of my roles at the time. Finally, they decided that they needed to pay for a private Psychiatrist (somehow all the assessments and support being given to me by the NHS had become suspect as they were all emphasising that my risk to others was minimal!!) who fudged the issue by asking me my opinion!

In the end, a combination of this ongoing process every time I took a dip in mood and the worsening of my symptoms forced me to consider an offer of voluntary redundancy. I think this kind of treatment by employers goes on without challenge simply because the cost of standing up for yourself, along with dealing with your mental illness, is just too difficult to contemplate.

A diagnosis of mental illness is isolating. Suddenly, you're not sure who and what to tell. Every conversation becomes a risk. For me it has been painful at times to realise that some friendships which have lasted a long time, foundered when my problems had a definition and a way forward. Although there are problems with the diagnosis and the label, it opened up hope that I could overcome it with effective therapies. I've had various responses from 'Rubbish, you're just depressed'... (the fact that they can say, 'just' depressed alone, gives an idea of the misunderstanding out there of the impact of mental illness),to 'don't be ridiculous, you've got your own house, car, job'.... to 'but you're so normal!'. These responses show out and out ignorance of what mental illness is and who suffers from it.

More subtle were the responses which initially seemed supportive, but as time went on and they realised that not only was I seeing a CPN, monthly, seeing my GP monthly, but I was also expected to attend twice a week for treatment at my local Mental Health unit, they started to tell me that it was silly the amount of time being taken to 'help' me. After all I had managed for over thirty years without this level of intervention. I guess these reactions demonstrate how far I had managed to mask the worst of my symptoms from those around me. By the time I was diagnosed - no one in my life at the time was aware that I frequently self harmed and that on a daily basis, I thought about suicide. Frequently, I was so overwhelmed by negative emotion that I could not function outside a work situation. When that environment was removed from me, some of my symptoms were suddenly more evident to my friends.

There is a perception of Mental Health problems as being something to be afraid of. I have begun to speak in public recently about mental health stigma and have been shocked that prejudice is found in all sorts of people from all walks of life. One of the responses is, 'but you can't have a complex mental health problem, you are not a violent person', which shows the need for real education about real people with real mental health issues. The fact is that you are more likely to be the victim of violent crime when you have a mental illness, than you are to be a perpetrator. As with many taboo subjects, headlines and media mask the truth and facts are neglected in exchange for selling more advertising, papers and programmes. I have found that this 'them' and 'us' gulf is best closed by speaking openly to people - when I'm well enough. I have also developed an upfront attitude to explaining why and where I can't cope with certain situations - 'I'm sorry being around people today is just too painful for me.' I no longer do things out of deference to other people, I am learning that when I am struggling with my emotions I need to care for myself, in the same way that I would care for myself if I had 'flu. And instead of making something up I let them know that I am unwell, just as I would with 'flu. After all both my BPD and the times when I have 'flu just tell me that I am a human being.

It is amazing that Mental Health is a subject that seems to be shrouded in mystery, something that is only discussed in hushed tones in corners. We may laugh at the older generations like my parents who refer to mental health problems as 'having trouble with your nerves'. But I'm not sure that modern attitudes are actually any more enlightened. They may have terms like depression and anxiety, but understanding has not developed any further than, 'why don't you get out and about, some fresh air and try to feel better!' Unless people actually HEAR what those of us with Mental Health issues say about how we are affected, then their understanding cannot develop any further. And if we are not engaging them in the conversation, then certainly no one is going to feel comfortable bringing up the subject.

The main thing I've found as I've spoken to different groups locally is that there are so many people out there who think they are the only ones who are struggling with mental health problems. The more we can talk to one another about the facts and reality of our illnesses and conditions, the more people will feel less isolated. Also hopefully the more people get to know individuals behind the diagnosis, the more they can see, that actually it's not 'them' and 'us', but it's any one of us who can be affected by Mental Health issues.

Why do you have to be so mean?

This week I have come across what can only described as 'hatred' for people with Borderline Personality Disorder. It shocked me. Don't get me wrong, years ago, before I was diagnosed with BPD, I used to work in the Criminal Justice System, and my specialism was Mentally Disordered Offenders, the majority of whom were diagnosed with some form of Personality Disorder.So, I was aware of negative attitudes to people with Mental Illnesses, and in particular, those with diagnoses of PD.

My colleagues used to groan if case notes included the dreaded BPD diagnosis. 1) because people with BPD are 'difficult' 2) because at the time, BPD was considered 'untreatable' by local NHS Trusts and refused to admit even suicidal cases 3) because there was a high likelihood of suicide/self harm from this 'group'. In short I believe BPD sufferers as a group have received and continue to receive a bad press from a number of sources.

I found that being consistent and listening closely to what was being said to me, often helped me to manage my cases, in other words: compassionately treating people, regardless of labels, as if they were human beings seemed to work. (not rocket science is it?)

Anyway, back to the guy who has obviously had a bad relationship with someone with BPD. His take was that BPD doesn't deserve to be treated as a mental illness, but is just down us being some kind of 'crazy ass' (his words). He even managed to intimate that the abusive backgrounds of a large number of people with BPD was actually the fault of the victims. Initially I felt defensive of myself and others who have suffered from what some describe as 'emotional sensitivity' rather than BPD. Then I considered that perhaps, following a messy break up (I've been involved in my fair share of those!) his anger was robbing him of his humanity. Which is understandable.

How do I respond to his point that I'm just an emotional mess? That I do not deserve treatment? Well, I think that I would point him to Marsha Linehan's (the creator of Dialectical Behaviour Therapy for BPD) explanation of BPD as equivalent to suffering 3rd degree burns.

Imagine suffering emotional and psychological pain that is so deep and so painful that the only solution you can think of is either to inflict physical pain to distract from it, or to believe that dying is the only way to stop it? Does that sound like something that you could sustain while maintaining a functional life? Yet many sufferers of BPD do manage to do just that, while holding down very respectable jobs and being creative and dynamic in certain spheres. This 'apparent competence' in certain spheres, my BPD-hating 'friend' points out as proof that BPD is made up by selfish women seeking to justify messy love lives and as an excuse to be nasty to men.

I think at this point we can recognise the ignorance and stigma evidenced here towards Mental illness in general. I mean you can't possibly run a country with a severely debilitating clinical depression, can you? Winston Churchill, anyone? Just because my professionalism and training allow me to carry out a job from 9-5 does not mean that the emotional distress I am experiencing is not real and does not have an impact on my mental and physical health.

If I may, I need to return to the burns analogy, even when time allows a skin to grow over the burned area, there remains a sensitivity that often never leaves. The levels of abuse I suffered as a child have left me with emotional and psychological scars. My diagnosis whilst not perfect, has allowed me to access help to develop skills which mean that I no longer consider death to be a solution. My treatment means that I am able to begin to 'function' again, after a complete breakdown two years ago.

I am responsible for the people I may have hurt throughout my life. I would say, though, if you rip the dressing off a burns victim, you can expect a strong reaction! My plea is: try to listen, try to understand, try to give space, and, if you think you are too angry or too hurt to see the human behind the label, make it a clean break.

http://bpdlifeinthemoment.blogspot.co.uk/

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.

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?

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)