This week a book called 'Breaking the Silence' about Mental Health Stigma has been published by Amazon. It has a number of contributors, including yours truly. All proceeds from the sale of this book will go to Time to Change. This is my own contribution about my experiences of the diagnosis of BPD (Borderline Personality Disorder) from the point of view of both a professional and a sufferer.
Here is the link to amazon:
I’ve enjoyed listening to the Joanie Mitchell song ‘I’ve looked at love from both sides’ many times. As I sit down to put my story on paper, it seems an appropriate way to sum up my experience of Mental Illness and the assumptions I’ve encountered around my own mental health and diagnosis.
For ten years I worked as a Probation Officer with a significant proportion of my caseload being Mentally Disordered Offenders (MDOs). At the time the Probation Service still existed as a statutory public body and we worked in multi-agency teams to manage the most dangerous and prolific offenders. Most MDOs who, it seemed to me, were essentially those designated as being capable of management using medication and under the care of a Psychiatrist were the only ones deemed worthy of local psychiatric intervention and support. This meant that ‘Mental Illness’ as defined for intervention by local mental health specialists was very narrow and rarely helped us in managing the most challenging behaviour.
Most of the emotional and mental health issues we encountered were bundled up in complex human needs, comprising, traumatic childhood abuse, self-medication through alcohol and illegal substances and many offenders who had been victims of violence. Many of my MDOs, if they had diagnoses, were designated as suffering symptoms of ‘Personality Disorder’. This was a ‘get out of jail free’ card for the local psychiatric teams up until 2007 as until then, such a diagnosis had the label of ‘untreatable’. Most multi agency meetings aimed at finding the best way of managing such offenders for the safety of both the public and the individuals themselves ended with the words from (usually) the Psychiatrist stating ‘Untreatable, this is a Criminal Justice problem.’ Along with my Police colleagues, I was constantly frustrated and ended up working as counsellor and emergency contact as such people had been banned from local A&E departments due to their behaviour towards others when emotionally distressed. Recently, there has been an acknowledgement that police holding cells and standard prison regimes are not appropriate settings in which to contain and address mental health related offending and presentation.
In 2007 the Mental Health Act sought to establish Personality Disorder as a diagnosis with a treatment pathway. This coincided with a deterioration in my own mental health and finally an assessment and diagnosis of Borderline Personality Disorder (BPD) in 2009.
Most people dislike the diagnosis of BPD because it essentially labels the 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 ‘stress related’ breakdowns associated with Clinical Depression all my life. Having had my first encounter with mental health services in school, aged sixteen, 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). Such constant uprooting, lack of stability in relationships and loss of identity evident in these periods of breakdown, are key symptoms of BPD. Yet, no one, from a Consultant Psychiatrist to Rape Counsellors ever completed a full life and psychiatric history with me, until 2009. I had had my first mental health referral at school in 1982.
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. In trying to capture how low I was my GP told me that not only had I run out of ‘fuel’ and was ‘low on energy’ she felt I was effectively like a car with no engine. During this time she increased and changed my anti-depressants on three occasions. I was referred to the Graduate Mental Health worker at the practice once again, as my presentation suggested clinical Depression and Stress related illness. 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. My mantra at this time was ‘I am not made for this world’, something I had felt all my life. I felt I couldn’t make myself heard or understood, I told my GP, ‘I am inside my own head, screaming’. None of this would have been apparent to anyone giving me a cursory glance. When I finally was signed off sick, all my records and case files were up to date and I had not missed any appointments with my offenders. When life came to a stop, it was sudden and complete. I had ceased functioning in any effective way.
Thankfully, the intervention of the Graduate Worker 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 was my Care Co-ordinator over the five years from diagnosis, through treatment to discharge in 2014. The 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.
Having experienced BPD as a professional and witnessed first-hand the attitudes of many professionals who had failed to see the individuals beyond the challenging behaviours, I was fearful of being labelled unfairly. Looking back I can see that there were times when working with me, could have been challenging. Those who managed to work effectively in helping me manage my condition, were the people who asked the question: ‘What is it that has created such levels of distress in this person?’ and ‘is this person able to identify and manage their emotions effectively?’
Due to a series of factors I had learned (usually the hard way) about feelings and how the average person expressed these. As someone with BPD, social interaction is not a natural ability. As a young child in my first years at primary school I was selectively mute. I have always struggled to recognise and identify specific feelings in others and myself. I have had to learn to censor myself and use thinking to mask my emotional turmoil. Obviously, there have been ways I have used to manage my emotional distress which have not been effective or helpful to me. From the point of diagnosis I had to learn that this was the case, that though my coping mechanisms had been ‘effective’ in that I managed to lead an outwardly successful life, ultimately I ended up broken, exhausted and unable to function.
'Treating someone with borderline personality disorder can be one of the toughest challenges a [social worker] encounters. Life for such a client is like trying to drive a car that is constantly careening out of control. Emotional vulnerability, fear of abandonment, and a seemingly invalid environment push the car from one side of the road to the other. The tiniest stressors can force the car into a ditch.'
Quote from: Dialectical Behavior Therapy — Treating Borderline Personality Disorder. By Christina Olenchek Social Work Today Vol. 8 No. 6 P. 22
If I may borrow from the quote above, anyone observing the ‘car’ of my life would have seen significant progress. Success in life, even. I had achieved academically, I was successful at sports, managed to hold down highly responsible and well paid jobs, for significant periods of time. However, look closer at the ‘driver’ and any casual observer would see a panic stricken, emotional wreck, as I struggled to keep my ‘car’ from careering from one cliff face precipice to the other. My life had developed into a pattern of emotional collapse, exhaustion and recovery, which resulted in my resigning jobs, selling houses and usually prompted the dissolution of my relationships. Every five years or so due to my inability to keep going, I would dismantle my whole life, pack up and move to another area, retrain, usually in another challenging career and rebuild my social life. I did this three or four times from the age of eighteen until I ground to a halt in my forties and found myself unable to do so again.
As I learned more about BPD and particularly the research and therapy of Marsha Linehan, who developed Dialectical Behaviour Therapy (DBT), I came across a phenomenon known as ‘apparent competence’. This relates to the ‘Swan Effect’ where on the surface it was not obvious I was struggling with life, while underneath I was frantically trying to keep myself going, paddling wildly against the waves of emotional distress which threatened to drag me under.
I think the issues around ‘apparent competence’ are examples of one side of Mental Health stigma which is not often discussed. For those of us, and there are many who continue to work and function well whilst struggling against complex mental health issues, there is an assumption from Mental Health Services that we are not priorities. After all, we’re doing ‘okay’. However, as I’ve pointed out earlier, this ignores the fact that before the ‘car’ of our life crashes over the precipice we probably were in need of intervention. Unfortunately, for many it takes us to get to the point of suicide or complete emotional and mental collapse before anyone steps in and offers support.
Having had the diagnosis and accepted for myself that I had been suffering the symptoms of BPD from as far back as I remember, I had an immediate decision to make. Given the levels of responsibility entailed in my job, as well as the emotional cost of managing difficult people, I felt that it was important to be honest with my employer about my diagnosis. This proved to be a double edged sword.
On the day I received my diagnosis, 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 that would be obvious the minute I walked through the door. As if suddenly ‘Unclean’ might have appeared across my forehead.
At the time, my Line Manager was aware that I might be suffering from increasingly severe bouts of depression. This, though felt really different, somehow I didn't feel as free to talk about more 'Complex Mental Health Issues' with her and I certainly wasn’t sure I was prepared to tell her that they were looking at BPD as a diagnosis. 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 for myself. Up until that I had only had an interest in PD (Personality Disorder) as a conscientious professional.
Unfortunately, the procedures in place and the attitude of the Senior Managers in charge of my Probation 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. 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 eight 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 Dialectical Behaviour Therapy programme I was offered a place on.
So can such Sickness Absence procedures 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? I was most disappointed because we were a profession trained in risk assessment and management. We learned about the interaction and importance of mental health with drugs and other substances in increasing risk to both the individual and wider community. If my colleagues and senior managers exhibited such limited understanding of Mental Illness and the risks associated with it, what hope did I have of acceptance from the wider community?
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? Again, and again Occupational Health staff asked for assessments and reports from those treating me. Again and again, the response came back that my risk was primarily from suicide and that continuing in work was important in providing me with the stability and structure I needed. It sounds ridiculous seeing it in black and white, given that I had worked happily and effectively for the same team for nearly seven years. Amazing that, suddenly, I was the risk to be assessed rather than be the assessor of risk which was one of my main 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!). He fudged the issue by asking me my opinion! Again, Apparent Competence meant that even after charging my employers for two one hour assessments during which he demurred on the diagnosis of BPD, he suggested a change in anti-depressant medication and confirmed that I posed no danger to anyone but myself. I decided that the combined experience, observation and assessment of five NHS professionals who had worked with me over a period of eighteen months to arrive at my diagnosis, outweighed the arguably biased view of one privately funded specialist who knew little about me.
In the end, a combination of the ongoing process of referral for risk assessment and scrutiny every time I experienced a dip in mood and worsening of my symptoms, forced me to accept 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 at the time.
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. One of the most helpful moments was my first meeting with my main individual DBT therapist who told me ‘I can help you.’ For so many who suffer from Mental Illness this, along with the acknowledgement that ‘I know you don’t want to feel this way’, are like beacons of light in the darkness.
From friends, 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 can suffer from it.
More subtle have been the responses which initially seemed supportive. 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, get 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.