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.

Fighting the Stigma

Even when meeting people as I leave my hospital appointments, my standard response to the polite, but empty question: 'How are you doing?' is typically either, 'not too bad' or 'fine thanks'. Oh yeah? So why the need to be going to the hospital?

Now, this is most likely partly to do with the cultural norm, I mean no one really means you to tell them how you actually are, do they? How any deviation to this norm is received depends on whether your decision to open up is related to physical health as opposed to mental health. So that, a response of 'Ok apart from this stinking cold' is much preferable to 'Been feeling really down for some time now.' I've been pondering the squeamishness we feel towards discussing mental health. We're different from previous generations, who didn't seem to be aware to any significant degree of emotional or psychological conditions, beyond 'bad case of the nerves', or 'eccentricity' or 'a bit funny'. I'm tempted to laugh, until I realise that actually, reading much recent media coverage, we haven't moved much further on in our understanding and stigmatisation of mental health conditions.

Spurred on by the work of organisations like Mind, Sane, the Black Dog Tribe and campaigns such as Time to Talk, I have been speaking to groups of people, trying to share my experiences of managing a complex mental health condition. I have been encouraged by the number of people for whom this has been a relief. So many people, struggling with depression, anxiety and other mental health conditions feel so, so isolated, because for so long so few people seem to have been able to be open about their own struggles. Again, and again so many have said to me 'I didn't know I wasn't the only one'. 1 in 4 people EACH YEAR suffer from a significant mental health problem ie a condition which requires the support and intervention of GPs, or Mental Health professionals. So if I am talking to 120 people that means that, on average, there will be 30-40 people suffering from a mental health issue at any one time.

Unless a physical illness is destined to be discussed on 'Embarrassing Bodies' I don't think that we are as reticent to discuss our physical ailments. Even then, I think the physical discomfort is likely to drive us to the GP, even men give in to pain discomfort, eventually. In fact, the typical response to telling people about my colds, sniffs, bugs and lurgies is 'Poor you, hope you're looking after yourself', which is nice!

We don't even have an 'Embarrassing Minds' equivalent, because it's easier to just pretend it doesn't exist. On all too rare occasions have I seen TV programmes which provide a small glimpse into something remotely resembling my experience of life, Bedlam, was one excellent example. It is remarkable, sadly, because of its rarity. More frequently, those who have emotional and psychological struggles are portrayed as 'outsiders', 'other than', 'not people like us'. The prime example at the moment is the portrayal of the residents of Benefits Street, most of whom are described in less than glowing terms. Notice the throw away comments about their mental health, such as 'Dee is on ESA because of her depression' dubbed over a scene showing her being narky with her kids. No further explanation of the 'Black Dog' that lives with every sufferer of depression.

I took nearly two years to tell people what I was struggling with Borderline Personality Disorder, (BPD)after I was diagnosed and started on the path to treatment. There were a variety of responses: total denial (Subscript: can't be true, you're too 'normal' and don't appear to be 'unstable'), minimisation (Subscript: No, you're exagerrating surely, why do you need to see a Mental Health Team?), ridicule (Subscript: Always knew you were a 'nutter' ha ha ha), disbelief (Subscript: I can't possibly be friends with someone with a mental health problem!). What all these responses have in common is that they are strategies to distance the responder from the Mental Health condition. If they can make me the 'odd one out' then they can live without fear of 'contagion'.

For people like this I would say: just as much as no one can predict accurately who will suffer from cancer, diabetes, virulent viruses; unfortunately, for us as human beings, we can never predict who is going end up suffering from a mental health problem in the future. In other words: IT COULD BE YOU! That's uncomfortable and bound to provoke anxiety - especially as mental health conditions and how they are managed are so seldom discussed in a well informed way, certainly not in the bulk of the media, or the political sphere.

Until those in charge of the debate, especially those in our government, actually engage in an intelligent and well informed way with the subject, there will be little impetus to improve the portrayal of mental health issues. Thankfully, under pressure from social media and certain individuals and organisations there is a small shift in the debate. However, the most powerful tool in this battle is the true stories behind labels and diagnoses and for this I am grateful to all the campaigning organisations.

Until it is as easy to discuss my mental health, as my physical health, on my better days, I will try to stick my head above the parapet and talk about the part of my humanity 'that dare not speak it's name'.

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)