Both....And....Life's Balancing Act

In the wee small hours of the morning, when I have tossed and turned all night, with anxious thoughts, all is darkness. Although the opposite point of view - the rose tinted glasses view that life is a bowl of cherries, seems less problematic, it is no less damaging, if it causes us to be unable to engage with life as it is.

The Dialectical part of DBT (Dialectical Behaviour Therapy) recognises that life is not all black or white, darkness or light, it can be both at the same time. For those of us who experience rapidly seesawing emotions acknowledging the reality of competing truths, can be difficult to negotiate, particularly when our emotions are informing our thinking that the 'truth' is either all black or all white. The sweet spot lies between accepting competing realities and fighting against one or other truth to the point of exhaustion.

In DBT, the decision sweet spot is called Wise Mind, a balance between being all rational or all emotion. This helps us to balance our purely rational, impassive, view of life with our instinctive, emotion driven knee jerk reaction to our life experience in making decisions which are ultimately helpful.

I understand Dialectics as the balance beam along which my view of life in all its light and shade can lead to me accepting the ups and downs of my life. It is an essential part of the Radical Acceptance which helps me to accept my past, build on my present and move forward into the future.

Dictionary definition: 'Dialectical thinking refers to the ability to view issues from multiple perspectives and to arrive at the most economical and reasonable reconciliation of seemingly contradictory information and postures.'

In applying it to my recovery and use of DBT skills, it is an extension of Wise Mind and moves us from the wilfulness of persisting with long discredited ways of coping with the contradictions of life to an acceptance of life as it is. It helps me to stop being a captive to my instinctive, emotional responses to life, which can be out of kilter with the reality I am experiencing.

Looking back on 2019, following the General Election, just before Christmas which rounded off an awful year, all seemed dark. Then I looked for other perspectives. I am grateful for the blogs of @sarah.styles.bessey who often reflects on the difficult experiences of life. She sums up for me the practical application of thinking dialectically about what we are going through:

'This was the year I learned all over again to reconcile that many things can be true at the same time:

...we miss who we used to be and we love the person we are becoming;...

love and grief;

hope and lament;

there are miracles and there are not;

there are funerals and there are baptisms;

this world is devastatingly broken, filled with weeping and suffering and this world is so freaking beautiful and good you could cry at the sight of a baby’s thigh or catch your breath at the sight of pine trees against a rose coloured sky or turn up the music to sing in the car with the windows down.

All of it: true.'

Life is not all darkness, nor is it all happiness and light. The difference between joy and happiness is that happiness is mostly dependent on what is happening to me. Nobody can be happy all the time.

Joy goes deeper and can exist at the same time as some of the most difficult of times. We can be grieving a major loss, or be struggling with the most difficult of circumstances, but in the midst of those times I can also experience the joy of a good cup of coffee, shared laughter, the warmth of my dog cuddling next to me.

Research shows that feelings last approximately 90 seconds and are fleeting - if we do not constantly fuel them with underlying triggering thoughts. This means that the most negative of emotions is survivable and passing. It also means that there is an opportunity to enjoy moments of positive emotions and allow them the same space to breathe as we give our negative feelings. When your life has been dominated by believing that your darkest moments far outweigh the times that were good, reflect and give space to those moments of light and hope which have sustained you. If we can give the times of light more weight than our negative feelings allow, we will be able to recognise that our lives are both light and shade and our challenge is to keep our focus on balancing these truths about life.

The Waiting Game

I'm not a patient person. As I have learned to manage my emotional storms, I'm realising I am an ultimate optimist. If I believe something needs to be said or done to change a situation I want to immediately act to do that. Since 2010, following my diagnosis and entering the wonderful world of mental health services, so much of my life suddenly spun out of my control. I could try to give my perspective on why so much of my experience of waiting has been linked to going on a list to be assessed for suitability for 'treatment' but I don't think or believe that it helps to identify factors that are beyond my control.

Recently I've experienced the same frustrations while waiting for assessment of a physical problem. It has given me pause to consider the things that I do which make that waiting time either painful or bearable for me. There is something in the power of my thinking to either make time seem like eternity or go quicker than I expected. I've realised that rather than being powerless during these times, I can control those things which I have control of. I've recognised a number of ways that I have been able to manage these times better than in the past.

1. EXPECTATIONS. There is nothing worse than time on my hands to make my mind increase or decrease the importance of small things to the final outcome when whatever I am waiting for arrives. If I have waited for two years for 'treatment' the importance I place on that longed for appointment becomes enormous in comparison to the what the human being behind the date is able to deliver. I think this is the most important element to manage so that long waiting times do not become a matter of gambling with how quickly my initial presentation at assessment may deteriorate. Too often waiting periods end up being shortened due to lapse into crisis. Sometimes my self harming behaviour is a way of short-circuiting the process because I feel that if I go on feeling this way much longer, I will literally die. I need some help to get through the heights of emotional pain, so that each of those moments is not necessarily going to end up with an inpatient admission. I need help to create in my own environment a safe place to wait. I wonder if equipping me again becomes part of the triage and assessment stage? This could mean that I don't have an assessment appointment followed by between six months and two years of nothing. THAT feels like I'm in limbo, abandoned, in no mans' land, helpless and more importantly as waiting magnifies my negative thoughts and feelings: not worthy of help.

I wonder if, while waiting for specialist service appointments, there is scope for equipping people with self management and distress management skills. Mindfulness which was core to my DBT therapy has been so helpful in so many waiting times for me. Could it be useful as a tool, among others, to help people manage the time spent waiting (given that the prevailing economic and political realities prevent these times from shortening in the short term.)?

I have noticed that when I break a leg or an arm, while I am waiting for the orthopaedic specialists the emergency staff have measures to support the broken bones, and alleviate the physical pain. Of course no one can remove from me the emotional pain and distress I am experiencing, even when I end up before the professional I have been referred to. No one can fix me. No one can undo my past traumas. No one can stop me feeling this lousy. BUT I can be helped to learn to manage such pain and distress in less self-destructive ways. Can I be offered some first aid for my emotions which can hold me while I wait?

2. PERSPECTIVES. My feelings and their imbalance within me cause my perspectives on the world around me to become skewed. Given the extent of my distress small things had huge impacts on my mental health. I tried two different interventions and waited 18 months before I started my DBT journey. During the time between diagnosis and about six months in the DBT programme I was still trying to remain in my demanding job. My perspective on waiting for treatment and starting treatment was heavily influenced by the sickness procedures which seemed to place some kind of magical aura on the idea that I had started being 'treated' for my 'condition'. The expectation became that because I had two days off a week to attend my group skills and individual therapy, then there should be no further issues from my mental health that would affect my work. In other words, having supported me during the waiting time, my employers then expected me to be magically 'fixed', ignoring the fact that my long term mental health struggles would require long term management, including re-learning how to adapt myself to any work environments, without ending up emotionally exhausted.

If we see our struggles with mental health as tackling pathogens, then we will end up having major conflicts between the needs of people using services and, particularly the medically trained professionals who determine pathways. I WILL blame you if you do not 'cure' me, you WILL blame me if your medications or treatments are not as effective as you had hoped. So many times during my experiences of different interventions I was told I had not made the most of the help on offer. DBT was the first time I was told that if I was not making progress then we needed to review how suitable the intervention was for me.

Another aspect, particularly when waiting and expecting the magic bullet of 'help' is time itself. I had experienced significant trauma from early childhood right up to leaving home at 18. Then again as an adult I experienced rape and sexual assault on two other occasions (as a woman there were other lesser assaults which were just part and parcel of life in the 80s and 90s), last being when I was 40. I was diagnosed with BPD (Borderline PD) at the age of 42 although I had been through many experiences with Psychiatrists, Psychologists, Counsellors of various shades and theories from the age of 15. It is now ten years since my diagnosis. Only five of those years involved regular contact with Mental Health Practitioners. In pure terms of number of hours spent with those practitioners compared to the number of years of turbulence and unhelpful coping methods, including self harm and self destructive behaviours. Given this, it would truly be miraculous if any Mental Health Practitioner was able to 'fix' the impact of so much trauma in my life. If during the time I have to wait for a first appointment I can be prepared to recognise these realities and to accept that, at best, I will have the support and expertise of someone to walk alongside me for a time as I begin to learn new ways of coping.

3. TIME. There is something in our culture at the moment which seems to encourage us all to wish our lives away. How many of us set our sights on our next break from work, be that the weekend or our next holiday. When I am struggling most, I find it easiest to live one day at a time. I have to. I don't have the emotional capacity to imagine or hope for more than one day at a time. When I have been at that stage, I have taught myself to look at moments as more significant than something to be endured while I wait for something in the distant future. If I can focus on each moment as a span of time which I can experience fully, either to be enjoyed or endured, then I know I can survive. And as things improve, those moments begin to lengthen until I can imagine myself engaging in life more than a day at a time.

4. RUNNING AHEAD OF MYSELF. One of the hardest things I face during recovery is my impatience to get to some goal or other. At the moment I am tired of not being able to negotiate the complexities of returning to paid employment. I am managing my condition, but I don't know yet if I am ready for increased hours and pressure yet. Most of all I find the temporary nature of so much of the voluntary work I'm involved in difficult to manage, apart from the uncertainty thrown in every 18 months of having my benefits reviewed. I find the system itself is a major hurdle to negotiate to try to build up paid work. Most of all I face tremendous stigma based simply on the diagnosis I received, having worked successfully in some challenging areas. I have found with small projects and part time work, once I have reached interview or even people have seen me in action, there is usually no problem with my suitability. Sadly for the first time in my life I find that the thing which gives me added experience and expertise in working with people with complex needs, something I previously had paper qualifications and work experience for, means that my application is likely to end up in the bin, without me even being considered a serious contender. This puts a pressure on to prove myself to people who have a skewed view of Mental illness and PD in particular. So, I find myself wanting to change the universe in order to push deadlines which I know are immovable. I cannot make Christmas Day move forward from 25th December if I simply put my tree and lights up. I cannot make Colleges and Universities or potential employers change their admission/application times or procedures. Ultimately, I cannot know if I am ready for more hours of work, until someone gives me a chance. Until then I need to accept that there is a lot about the world of work and attitudes of employers to mental health that I cannot change.

Ultimately, time spent waiting can either be painful and feel like time wasted, or I can try to redeem the time:

- by not focusing on the event, appointment or occasions I am waiting for.
- It helps to go back to basics and try to live one day at a time.
- To admit when the environment is too difficult for me to change.
- To accept that moaning and allowing myself to stoke feelings of anticipation and anxiety will only make the passage of time feel as if it is slowing.
- To notice the positive things about having this time to work on things I rarely have time to work on...such as my yard, my dog, my fitness.

Recovery Story

I have been asked to tell my story at a conference of the World Association for Psychiatric Recovery at the end of April. As part of the preparation I was also asked to provide a written version for delegates to take away...this is it:

‘The past is a foreign country.’ Not for me. My emotional memory is highly tuned and sensitive to pain and suffering, which means that the memory of childhood trauma can hold the same emotional impact 30 or 40 years later as the moment it happened. I did not know that my emotional and mental battles had a name until I was 42 years old. I had first been referred for support from mental health services, by my teachers at the age of 16.

I was the classic ‘quiet child’. I didn’t cry, I did not speak in groups, did not speak in school, communicating with adults through my brother or a close childhood friend who started school with me at the age of 4. My brother and I suffered similar, significant physical and emotional abuse. For me this was compounded by sexual abuse from a series of perpetrators until the age of 18 when I finally escaped to university. School was my safety, literature was my escape, although until an inspiring teacher noticed me when I was aged 9, my first school labelled me as educationally, ‘sub-normal’, despite the fact I was devouring books at home.

Despite our similar family experiences my brother and I have managed to live as adults with very different outcomes. He has never suffered any significant mental health issues. Here is where my brain reacts differently to the world from those around me. I have been given a number of labels since 2011 when it was first suggested by an assessment, following persistence from my GP that my symptoms and mental health history indicated a diagnosis of Borderline Personality Disorder (BPD). I know many patients find this label problematic, but, given the fact that I had successfully sidestepped hospitalisation despite entrenched patterns of self-harm and suicidal ideation, I viewed the news as an opportunity to move forward.

By 2011 I had been working as a Probation Officer for nearly ten years. I specialised in Domestic Abuse cases as well as those who were considered ‘untreatable’ by Mental Health professionals due to ‘Personality Disorder’ diagnosis. By 2007 the Mental Health Act stopped this loophole and stated that professionals could no longer pass the buck to Criminal Justice Agencies where prison certainly was not the appropriate setting in which to address both self-destructive and violent behaviours. I was able to work within a multi-disciplinary team, made up of Probation, Police, NHS and voluntary sector staff to address the key socio-economic factors, alongside mental health and addiction issues, in order to address offending behaviour. It was within this context that I first came across the work of Marsha Linehan in developing a specific therapeutic approach to BPD patients which has become the Dialectical Behaviour Therapy (DBT) model.

I recognised how effective DBT could be for some of our cases when set in the context of significant community support. Unfortunately, 2010 brought a new government who did not feel able to support such ‘end to end’ management of offenders with a rehabilitative continuum supporting people as they moved from prison and sought to re-integrate effectively within their communities.

All of this experience meant I was open to the possibilities offered to me by DBT to develop the skills necessary to manage the impact of my past whilst learning about my emotions and the impact of the world around me on my mental health. I recognised that having learned about emotions, DBT would offer me new coping skills to manage my emotions more effectively than all the self-destructive behaviours I had previously employed to ’survive’ life. I was grateful that my diagnosis came at the same time that LCFT started to deliver DBT as a pathway for BPD.

In telling my story I am keen to identify the factors within DBT and the Wellness Recovery Action Planning (WRAP) programme which have been instrumental in helping me to maintain my mental and emotional wellness.

1. Managing Expectations – Often I have observed in professionals a natural tendency to recoil from the levels of distress I have expressed when I am in crisis. My label has recently changed on my records from BPD to ESPD (Emotionally Sensitive Personality Disorder). It does not fully explain the complex mix of biology and social environments which result in me displaying extreme reactions to the world around me. It is Marsha Linehan who has articulated for me, the extent of my emotional distress:

‘Borderline individuals are the psychological equivalent of third-degree-burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering.’

For the professional who encounters such apparent suffering, there is an almost unbearable pressure which seems to come from me, in despair crying, ‘help me’. This is where the professionals’ role in recovery perhaps needs to be adjusted, and I would suggest, is within the DBT model.

In my first meeting with my one to one therapist and the DBT Contract signed by me and my therapist, there is an acknowledgement that no human being, no matter how skilled, can stop me from feeling the pain of my life in the past, nor can they give me a prescription which immediately removes or dulls emotional pain. What I am offered is hope that together we can work to help me learn to manage my distress, make friends with my emotions and make changes to the behaviour which so far has served to prolong my suffering.

Throughout my experience of DBT I was encouraged to attend ‘training sessions’ (Group Skills) and apply those skills with the help of my DBT therapist (my ‘Coach’) to my own life. The question which after decades opened the door on hope for me, having ‘failed’ at numerous talking therapies, was ‘What does a life worth living look like for you?’ I was informed that no treatment or professional can undo my past experiences, nor can one person or therapy undo decades of maladaptive coping mechanisms in a limited period of time and within solely clinical settings. As with referrals to Physiotherapy for those with physical injuries, recovery means that there is a responsibility on the patient to take the exercises learned and practise them in the real life setting.

2. Managing Limits – From the beginning of the DBT therapeutic relationship, there is a clarity and agreement that both patient and professional will have their own personal and professional limits - it is helpful if an agreement is made about what those limits are and what the likely consequences of breaching those limits will be. There is also an understanding that each therapist has the backing of a team who understand and agree with the ethos of the DBT approach. This provides protection for both the patient and the therapist. In terms of carrying it into real life this models protective boundaries necessary to keep relationships going.

In the past my life patterns seemed to go in five year cycles. Every five years my central relationships would not only end, but explode with all kinds of collateral damage, resulting usually in a loss of accommodation and employment. I would spend some time in treatment, recovering, usually travelling abroad, in extreme settings (ie war zones), then restarting in a new location. Now I am building up a strong network of friends in a place I have lived and worked in for 16 years. When I was first diagnosed I was socially isolated and unable to find the emotional strength to start to build relationships outside myself and those necessary for a job to work.


3. Managing Reality – When struggling with the basics of life, usually most forcefully at the beginning of the recovery journey, before diagnosis, there is a perception that I am the only one experiencing life in this way. I have a distorted view of the levels of my own failures. In a sense I believe I was like Supergirl, not only did I feel I was an alien on earth, I also expected of myself massively higher standards and limits than anyone else. Until, ESPD became my ‘Kryptonite’ reminding me that after all I am flawed and human, and therefore absolving me of responsibility for everything bad in the world. In short, as I was reminded during my DBT journey, the universe doesn’t actually revolve around me and there are many, oh so many, things I do not and cannot control.

Another reality that comes as a shock after years of trying to manage a daily rollercoaster ride of extreme feelings is that, most of everyday life is boring and uninspiring - when struggling with Mental Health issues there can be a distorted view of life on the 'other side' where life must be rosy, easy and better than that experienced by me.

This is where involvement in real communities, becomes essential to maintaining recovery. If I can only relate to those who have an experience of Mental Health Services, or who have a shared diagnosis, then I am not allowing myself to experience the variety of relationships around me. It is more positive and more akin to real life to join groups which are focused on a location, sport, or interest. I have developed a ‘wellness group’ which, after nearly 3 years is firmly established within a defined local community. This means that we offer not only a weekly group focused on a programme to help us engage with activities which are available locally and can help our mental, physical and spiritual wellness. We have a strong online community of over 100 people who have come through word of mouth. We recognise that people are on a different part of the recovery journey so our weekly group is flexible and adapts to the needs of the group membership. As such we do not have a static membership, some people attend during sickness absences from work as a support in returning to work and move on. Some attend not knowing much about how to ask for help and need signposting and practical support to access GP referrals. Some are carers. Since we began we have had 50 members of the weekly group with this year’s group running at 6-8 people attending each week. We also meet on a one to one basis to provide signposting and advice, contact is usually made via local community contacts or by Direct Message on our Facebook page.

We encourage people to move out from our group and try other community involvement through our contacts with local groups and businesses. Having the opportunity to contribute within a wider community is vital to recovery. There is such a thing as a meaningful life - this cannot include unlimited access to Mental Health services as that is not the experience of most people. There is something intrinsically unhelpful if the only safe places a person feels they have can only be within Mental Health services or in socialising with those who have similar experiences. This is different from peer support.

4. Managing Discharge – From day one the end of DBT therapy and discharge were discussed openly with me, even though my actual date of discharge was nearly two years away, I was preparing for it from the moment I started therapy. Unlike my previous experience of endings I was more than ready to move forward, even though I was not symptom free I was able to leave feeling confident that I could live with the limits caused by my ‘Kryptonite’.

5. Managing my condition - Everyone has the ability to manage their condition if provided with the right skills and therapy to help them build a meaningful life in spite of their diagnosis. Hope is always there from day one underpinning the efforts of both staff and patients.

A Word about Relapse

I was discharged from the Complex Care and Treatment Team in 2014. In April 2017 I suffered a relapse in my condition requiring the intervention of the Crisis Team and Home Treatment Team. This had been triggered by financial pressures caused by a 2/3 cut in my benefits. Apart from not having enough for food and utilities this could have resulted in the repossession of my home. Thankfully the work I had put into building strong relationships meant that some friends were able to buy a percentage of my house and secure my residence. At the same time, it was taking 18 months to appeal the assessment decision. Each stage in the appeals procedure was highly distressing and only ended in October 2017 when I had to present my case to a panel at the Magistrates’ Court. Sometimes the environment is too powerful for me to manage even with my DBT skills.
I did feel like a failure, but I was told the DBT team within LCFT had developed the Acute Therapy Service (ATS) which helped me to stay in my home with the support of the HTT and my social network. I travelled to the ATS unit daily and for six days was given respite from the relentless pressures, to sharpen my mindfulness and emotion management skills. It felt like I was able to reboot and return to the same pressures but with my hope restored.

When you have been on the recovery pathway for some time, relapse can feel devastating until I take a step back and recognise how far I’ve come. The skills I once relied on to prevent self-harm are no longer required, but other sets of DBT skills are habitual, particularly mindfulness.

Hope and Meaning

Hope and Meaning cannot properly be provided by medication or therapy within a clinical setting. For me, hope and meaning come from a personal faith in a God who is bigger than me and my past and problems. For anyone, whatever their belief system finding someone or something that is bigger is important to providing an answer to the question, ‘What do you get up for each day?’ I think that the journey through therapy can partly be a search to discover what this is for each individual. It’s important for me to know why I should comply or co-operate with interventions or medications. In the past when I was unable to find an appropriate answer I was the nightmare patient – ‘uncooperative’ and ‘disruptive’.

I have long held that all of life is a journey, we pass through different terrain and places. Along our life’s journey we may be joined by others who travel the same path. I have seen those who have helped me as Care Co-ordinators, Therapists and Facilitators as ‘journey friends’, people who join me for a part of the journey. Some, the best practitioners, walk alongside me. Others, run ahead, leaving me lagging behind. Others, stay behind me, out of sight, making me feel uneasy and judged.
I am grateful for a therapeutic pathway which offered me hope that things could be different one day.

Taking the 'PIP' (Part 3) Relapse

Relapse. There it is. In black and white. After nearly three years of slow progress towards a semblance of stability, in March I found myself referred to the Single Point of Access by my GP, following what felt like a major setback.

I'm avoiding the term 'breakdown' because I know I have been much lower, for longer, in the past. However, given that I had been contemplating ways to go back to paid work, this time last year, to be faced with the full extent of my regression and loss of emotional stability, felt like a slap in the face.

The major trigger? The ongoing uncertainty over my financial stability and the emotional impact of going through a PIP appeals process which is destined to end in a court hearing where I have to prove that the impact of my emotional and mental instability significantly impacts my daily life. I returned my request for a tribunal on 10th January 2017 and am still awaiting a hearing date. That along with the hardship caused by losing two thirds of my income in one fell swoop has had a devastating impact on my ability to manage the symptoms of my condition. I became exhausted with the effort of trying to manage my day to day life. Something the PIP payments are supposed to help with. Eventually, I became so exhausted I started to press my self destruct button, repeating self defeating behaviours from the past, because it seemed that no matter how hard I worked to maintain my recovery it seemed as if I were the mole in the arcade game and circumstances, particularly the system designed to support me and which I had paid into for most of my life, was wielding the large mallet which was constantly crashing me down, every time I managed to push myself up again.

Meanwhile, a decision on my PIP payments, which replaced the DLA is still awaited. The process has now lasted nearly ten months. I have never received any mobility payments, but the additional daily care component had allowed me to continue to work on a part time basis for nearly two years more than I would otherwise have been able to following my initial diagnosis. I am in 'limbo' unable to move forward towards paid employment, paralysed by a complex mix of stigma, over qualification, lack of transport options and the lack of confidence caused by my experiences of employers and interviews over the past five years. Who wants to take a chance on someone with my mental health history?

This situation became untenable, the skills which were helping me to maintain a level of stability were essentially rendered useless as I was overwhelmed by the complexities of a situation beyond my control.

The good news is that in the time since my last referral into Mental Health Services, there has been a recognition that for someone like me, a hospital ward is not a positive environment, nor is it somewhere that I seek to be to find safety. I am currently under the care of the Home Treatment Team (HTT), but needed acute care in the initial crisis period. I was offered a place on the Acute Therapy Service (ATS), an intensive six day placement which required me to travel to a local unit where I spent time undergoing a booster for mindfulness and Dialectical Behaviour Therapy (DBT) Distress Tolerance, Emotion Regulation, in addition to Occupational Therapy approaches, Mentalisation, Holistic therapies (I opted for head, shoulders and neck massage) and art therapy.

As with DBT, the success of the ATS requires a high degree of motivation towards self management. Having benefited from the 18 month DBT programme I found that I was able to refresh some critical skills I had lost over time, as well as having a fresh approach from an OT perspective to 'regrouping'. Throughout there was a recognition that during my stay some 'magic bullet' which would have removed all the factors in my life that ground me down, was impossible. There is no such thing. What I was provided with was space to let go of the pressure to keep going regardless of my ability to do so, space to remind myself about the importance of self care and self compassion and most importantly an effective structure in which to begin to regain my sleep routines. As with the main DBT programme I left with a reminder of what I could manage, my limits, a structure in which to regain my emotional stability and most of all, a belief that I could cope.

The uncertainty around the PIP has not changed, in addition there is destabilising atmosphere of an election campaign which offers little hope of respite of those affected by 'Welfare Reforms' - I am accepting that this environment is too strong for me to fight on my own. Above all, the injustice inherent in the PIP assessment process is something which I cannot win against on my own. I must stop 'tilting at windmills' and use what energy I have to survive and hope that I can regain what has been lost through this period of relapse. Above all, I am reminded that recovery is not a straight line.

Oceans of Emotions

I've always loved water. Being in it, on it and under it. I've enjoyed swimming in all kinds of swimming pools, beautiful Victorian bath houses with cold little cubicles, my modesty sheltered by Circus tent-striped curtains, modern circular 'fun' pools, aimed at frustrating the serious swimmer, rivers, lakes, and most exhilarating of all, the sea. Again and again I have returned to water imagery to try to explain the complexities of my own mental health struggles.

As I have widened my experience of explaining, discussing and challenging assumptions about mental health in general and my own diagnosis in particular, I have realised that, because I cannot show you operation scars, or other visible symptoms, it becomes difficult to help you understand my experiences.

When your primary symptoms are centred around emotional volatility and their impact on your behaviour, most people think that you are describing being 'moody'. That or words and phrases like: over-dramatic, highly strung, over-sensitive melodramatic, emotionally manipulative, serve to dismiss my experience and need for additional support. This has come sharply into focus throughout my recent experience of going through the Work Capability and Personal Independence Payment assessments. So, once again, I will try to explain how come time and resources have been spent on treating my 'moodiness' since my diagnosis in 2011.

Mablethorpe V Maui

I grew up with visits to the seaside on the North Antrim coast, which means that I became used to waves crashing in from the Atlantic. As a strong swimmer I enjoy riding on the top of waves as they hurl me towards the shore. Once when visiting Ghana, I experienced huge Atlantic waves with swirling undertows which were far too strong even for me to cope with. I certainly learned the limits of my ability in the huge Rollers off Sir Charles Beach on the Gold Coast.

Imagine then, my first visit to the North Lincolnshire coast, when after nearly a year in South Yorkshire a group of us went for a day out at the beach. As the flat beach gave way to water, I was deflated, as the 'waves' (or rather ripples) lapped at my ankles providing none of the excitement or exhilaration I normally associated with sea swimming.

My point is? Imagine that you live your life with emotions which never reach the ripples of Mablethorpe. Imagine that every day you awake with an emotional arousal akin to the waves crashing in off the Atlantic onto the Antrim coast. You never manage to start or return to 'neutral'. Then imagine that the everyday events and trials begin. Someone cuts me up in traffic - I am not able to be annoyed, because my emotional temperature is already raised, one small event can provoke an outpouring of rage.

So what? A lot of people experience road rage. Problem being that the waves of emotion are at Gold Coast levels and continue that way for a sustained period of time. Now imagine that before I can return to smaller waves of emotion, I receive an important phone call at work, which puts additional pressure on my deadlines for the day. The emotion switches, but returns to huge crashing wave levels, this time of anxiety. As a result of this heightened emotion I find I have physical symptoms, nausea, triggering migraine symptoms. Sometimes I may throw up. Sometimes I may find I succumb to a debilitating migraine attack lasting 48 to 72 hours. I am only half way through a normal day.

In the past sometimes the only way I had of reducing the high levels of emotion was to self harm - thus somehow releasing the building pressure. Imagine cycling through a full range of emotions from anger, anxiety, to relief and feeling excessively giddy several times in one day, like this. Is it any wonder contact with other people and life in general is exhausting?

Oceans V Brooks

One of the observations commonly made by others about the behaviour of people with Emotionally Sensitive Personality Disorder (formerly Borderline PD) is that my reaction is out of proportion to the triggering event. There are a number of reasons for this, some biological, some due to my experiences in life. Research has shown that the emotion centre of the brain (Amygdala) is more highly attuned and sensitive than average. For those who have experienced childhood trauma this emotional disfunction means that memories, particularly the emotions evoked are overly vivid and are experienced with the immediacy of immediate experiences - as if I am reliving the original trauma related to the given emotion.

Sometimes the encouragement to 'just let go of the past' adds to the pain, as I feel judged for feeling the fear, rejection, sense of shame with the same power as if it had happened in the immediate present. When I fear that I am going to lose a friendship, I am not only filled with the fear in this moment, it connects with every time I have experienced rejection throughout my life. So, I am not only dealing with one wave of emotion at a time, I am trying to manage oceans of the same emotion, an accumulation of every time I have felt, particularly, painful emotions. Again, is it any wonder that my emotional reactions are out of proportion to the triggering event in the here and now?

Self Defeating V Effective

There are effective ways of managing life but there are also self defeating behaviours which over the years I have developed to help me get through the crashing emotional waves, but which do nothing to take the power from them. Symptoms related to the emotional turmoil of ESPD (BPD) include, self harming behaviour, substance misuse, overspending, excessive speeding, or reckless driving, problems with eating, an unstable sense of self, major problems in relationships. When I am struggling to maintain day to day life in the face of my turbulent internal struggles, it becomes impossible to think of more effective ways of coping. However, those self defeating behaviours, which, however, flawed, have kept me going over the years, need time, patience and space to be replaced by more effective coping skills.

Having painted part of the picture I hope this explains why Dialectical Behaviour Therapy (DBT) is such an intensive course of therapy. Once I was discharged, it was only the beginning of managing my emotions daily using the skills taught to me during the DBT programme. When talking of mental health conditions, I think people become confused particularly once direct care ends. If I am discharged from hospital following an operation, then the problem has been dealt with and my condition, hopefully improves. For some mental health and physical diagnoses there is no end point. Just as the diabetic needs to undertake both medication and lifestyle changes to manage their condition effectively, so I need some medication, alongside the DBT skills to be able to keep the waves of emotions manageable. 'Manageable' is not 'dealt with'.

Words (and their impact on Recovery)

'The verb is 'to crown'!' As I write I am shouting at a journalist, supposedly an artful practitioner of our language, telling me that someone is on in the process of being 'coronated'! Grrrrr. I would not call myself a grammatical tyrant, but really folks, English is so difficult to learn as a foreign language, precisely because we can carefully choose the words we want to use in any given context. I used to liken grammar to a train. It makes sense if you label in a very specific way... anyway I'm not about to launch into a Year 7 parts of speech lesson, although I have had a hankering for teaching recently. Anyway, the main thrust for my imagery was to convey to the children that how we structure our words is vital to helping us become really good at communicating what is in our heads to the world around us.

Of course as we grow older we find that not only have we left the childish belief that 'words can never hurt me' behind us, but we realise there are certain words which not only convey an idea, but can be loaded with judgement. Words like, 'unemployed', 'mentally ill', 'immigrant'carry with them sometimes very dark judgements, mostly about people who have a different background or experience to us.

One thing I have noticed as I have continued on my recovery journey, is that I am now more sensitive to certain words and, as a result, they can have a devastating impact on my emotions, often triggering feelings of failure. Sometimes it's a single word, at others it's a well worn phrase, or a sentence. Here is a selection:

Relapse. When I was working with drug users in recovery there was much discussion around 'lapses' and 'relapses'. Our mantra was 'a lapse is not a relapse...' I have found that when I face struggles in recovery from my emotional issues everyone refers just to a 'relapse' which to me means failure, going back to square one, letting myself and everyone else down. One word, but so much weight of judgement. I have combatted this by dropping the 're' and saying to myself 'a lapse is not a relapse' A lapse means that I have been overwhelmed by a moment, it is a temporary setback, recoverable. I can reset myself from a lapse. To me, for a relapse to happen means I have needed more extensive outside help to recover from out of control emotions and/or I have reverted to using self defeating coping mechanisms. It may seem a small thing, but the addition of a prefix totally changes my reactions and/or actions to recover again.

Mental Illness/Condition/Issues: I could call what I battle with, 'bagel', that way I can totally avoid judgements being loaded on me by others who have interpreted what suffering from a Mental Health Condition means. The problem is that without giving you my history and context the word is out of place and therefore fails to convey the ideas I am seeking to communicate. Hence it is problematic if I launch into my story by telling you that 'I was diagnosed with 'bagel' in 2011'. Sometimes I have the choice to ignore other people's judgements and values applied to certain labels and choose to redefine them for myself. If I believe that mental health conditions are just the same as physical health conditions, then why wouldn't I be willing to use commonly used phrases which are basically descriptive. The best way to tackle stigma is to introduce the ignorant to human reality. It is powerful to stand in front of a room and be able to admit that I struggle with my emotions and sometimes my thinking becomes clouded as a result. Particularly in recovery this can be more productive for me than focusing on trying to change people's use of specific words - why not simply introduce them to the person they avoid behind the labels?

Vulnerable v Fragile. One thing I heard through the DBT (dialectical behaviour therapy) programme was that although I may be emotionally vulnerable at times, I am not fragile. There is a song by Julia Fordham called 'Porcelain' and it expresses that frustration women often have when treated as 'weak', needful of protection. I know there is a paradox here. It is nice to be looked after, to know that people care for our needs. I guess there is a line, maybe it's similar to the one some relationships cross when 'protective' becomes 'possessive'. There is a sense of smothering, of not being trusted to be an adult, a loss of independence. I think there is an element of seeing patients as 'fragile' which contributes to the environments in Mental Health services which create dependence and that thorny little issue of 'learned helplessness'. Granted there are times when it would lovely to have a white knight swoop me up into his strong arms while he whisks me away from my daily grind and struggles. Except, those moments are really meant to stay in my childhood stories and now, sometimes in the cinema. Most importantly, for my ongoing recovery, to see myself as having vulnerabilities without being 'fragile' is important to giving me a sense of control over my life and more especially, my emotions. My goodness, if my experiences in life have not shattered me, there must be a core of steel in there somewhere. I may be a product of my past experiences, but I am no longer their prisoner.

The issues around Mental Health Stigma are part of a wider demonising and marginalising of certain groups nationally and internationally. I do listen to Donald Trump and worry that he is so oblivious to the power of words, particularly when conveying vacuous and bigoted ideas. In the end no word is an empty vessel, I need not only to take heed of my internal judgements, but also the fact that those who hear my words carry their own history which affects their interpretation of what I am saying.

Perhaps, the conclusion to my reflections here is that I should remind myself to hear what is behind others' words, as much as I expect others to move beyond their own (narrow) definitions of mine. Maybe we all need to take time to get to know people as people, take the pre-judgement out of our interactions. I know, I am Canute and the waves of words flooding our public spaces is the sea coming in around my feet. Only place I can start is here.

The WCA, my Recovery and Me

I've had a substantial period of relative stability. As with any path to long term recovery, I have had ups and downs as well as adjusting the direction of my life to managing my condition on a daily basis. Compared to three years ago, I have been doing really well, until...

Life happens to us all, bereavements, the day to day grind to manage income over outgoings. In addition I have to manage my reactions emotionally. It helps if I can plan my life and build routines to support my physical as well as my emotional health. Those are the skills I have had to learn through intensive DBT (Dialectical Behaviour Therapy)and those are the skills which have helped me manage the cycles of despair, self destructive behaviour and recovery. It was going well, until...

One of the most difficult aspects of life to manage when I am emotionally unstable is my finances. It is essential that I don't restart the spiral into debt which marked most of my adult life. I need to be able plan and to know well in advance if I am likely to lose any income so I can make the necessary adjustments. Perhaps, emotionally, I need more notice than most, I don't react well to change of any kind. So, any changes are highly destabilising. Through hard work and with the support of debt charities and the Citizens Advice Bureau, I have managed to get to a level of financial equilibrium even though my income is the least I have ever had in my life. Until...

Everything suddenly was thrown into disarray by the arrival of a white envelope which contained my Work Capability Assessment form. Suddenly, all my anxiety symptoms came rushing back. I had a full blown panic attack. Why such a reaction? I don't think anyone can understand the cumulative impact of all the rhetoric and talk about 'workers and shirkers' unless they have been involved in the realities of the so called 'welfare reforms'. The current political and economic culture casts me in the role of someone who is a drain on society. Despite having worked and 'paid' into the system for over thirty years, I feel guilty for being so ill, for so long.

Filling in the form itself, involves making sure I detail the impact of my condition on me. It means revisiting the worst times of my life, reinforcing the sense of me being a condition rather than a person. It reminds of the limits my condition places on my life, it reinforces the sense of being 'less than' everyone 'normal' and confirms that I am worthless as a person able to contribute to the wider community. This process of form filling was made worse by the fact that I had begun to volunteer on a regular basis and was rebuilding my self confidence, only to be reminded (by myself) of how far from 'normal' I am. I needed to get the form posted and away from me as quickly as I could. I was given a deadline of 18th March to return the form by and posted it on 4th March. If that had been the end of the WCA form, it would have been okay, but it wasn't.

On 11th March I suffered an emotional crisis triggered by another letter, which threatened me with losing my benefits because they had not received my form. It wasn't due until 18th March - the impact of the letter was compounded by the fact that in the past when I was in significant levels of debt I received similar 'threatening' legalese letters from debt collection companies. There was no phone number on the letter where I could query the non arrival of my form (along with significant amounts of reports and medical evidence). I had to phone the Job Centre Plus phone number. I had to wait 20-25 minutes before reaching a human being. The phone system is automated and it is not immediately clear that it is the right place for WCA queries. By the time my call was answered I was sobbing and distraught. Any ability to use my 'Wise Mind' skills had long since been overwhelmed by feelings of anxiety, panic and an increasing sense of injustice. The person at the other end, was unable to help me and pointed out that the system was showing that they had not received my form. As I had returned it on 4th March, this increased my distress. I asked what I was supposed to do? 'Send in a duplicate'. She dictated an address. 'That is different from the one on this letter'. 'Yes, now that you have failed to return the form on time, it needs to go for adjudication and you need to explain why it is late.' My mind spiralled, it wasn't late, I still had nine days to go until the deadline. She then explained that depending on whether my reasons were 'acceptable' I may have my benefits stopped. By the time I came off the phone I was completely out of control emotionally, something which I had not experienced for about a year.

My most level headed friend bore the brunt of my uncontrollable sobbing. Having read the letter several times, she pointed out to me that right at the bottom in smaller print than the 'URGENT THIS DEMANDS YOUR ATTENTION' opening paragraph, was the sentence, 'if you have returned the form already please ignore...' She spent a number of hours calming me down and we decided to leave redoing the form until after the weekend. We agreed that I would phone back the Job Centre Plus number on Monday and do a final check to find out if the form had been 'found'.

So, I phoned on the Monday, with still five days to go to the original deadline of 18th March. This time when checking the 'WCA system' the notes had been updated. My form had been received on 7th March. The lady asked me when the 'reminder' letter had been sent: it was issued on 9th March.

There had been no need for the letter to be sent, and therefore no need to cause me undue distress. The system did not help me remotely in my recovery or give me any incentive me towards returning to work full time. In reality, I do not think that I will ever be able to manage that and maintain my emotional stability. In fact the emotional fall out from the incident has caused me to remain emotionally vulnerable for a six week period. Energy which could have been spent on planning ongoing recovery and increase in activity which will eventually lead me on to a return to some level of paid work, has instead been spent in recovering from the WCA process and in regaining the emotional stability which had been part of my recovery.

On reflection my experience of the WCA process was relatively straightforward and simple, resulting in my current placement in the support group of ESA continuing. Without the pressure of being in the WRAG group of the ESA (and the £30 per week reduction) I can return to my path to recovery without daily anxiety about having to meet arbitrary deadlines, appointments and interviews which would destabilise me entirely.

Yet, I have suffered six weeks of instability unnecessarily. I am well educated, have had over thirty years of work and professional experience, have a strong support network and had been stable for some months prior to the WCA process. I can only imagine the damage caused by this process to those who do not have access to any of these internal or external resources.

I have a number of observations:

1) If you insist on people on sickness and disability benefits meeting immovable deadlines under the threat of losing their income, then your system needs to be equally accountable and efficient in managing the needs of those it purports to 'help'.

2) If you issue threatening letters to people who are emotionally and mentally vulnerable, please have the courage to provide a direct phone line on which to contact you. Do not pass the buck to public servants who are not privy to all the information about your processes and who are faced with having to manage highly distressed individuals, some of whom are at raised risk of suicide or self harm as a result of your system.

3) Because I have a mental health condition, does not mean that I can be dismissed as not being worthy of the usual courtesies and social mores of our community. Even in the criminal justice system a defendant is 'presumed innocent' after the police have laid charges against them. The WCA process feels as if I am considered to be deliberately trying to defraud the system.

4) 0.3% of welfare claimants have been proved to have made fraudulent claims. That means that 99.7% are not - why set up a system which is so punitive for such a tiny proportion of your target constituency?

5) When will we value people for who they are, not for how much money they either 'cost' or 'contribute to' society? Although, I can point to the fact that I have managed to work for most of my life I am loathe to base my value or any right to claim support on this. When I was able to I was happy to join with the rest of the community in providing for the vulnerable and those in need in our nation. After all, I was helped through university by free education, so it was right that I paid my tax and national insurance towards supporting those who didn't earn as much.

6) When we judge those on welfare, we forget that it is possible for anyone to lose their health, job or home due to a sudden change in circumstances. 'There but for the grace of God, go I...'

Life in the 'Wheel of Fire'

I studied English Language and Literature at university. Shakespeare, of course was one of the most significant writers studied, due to his influence in both literature and language spheres - he invented 1700 words that are still in common usage! Of all of his plays I am most drawn to the tragedies of King Lear and Hamlet, along with the tragi-comedy, Twelfth Night. I kind of love misery...

Central to all of these plays is the idea of fate and fatal flaws in the main characters, which causes their ultimate downfalls. This sense of being trapped in endless suffering is sometimes called 'the wheel of fire'. The idea of characters trapped in the 'wheel of fire' comes from Greek tragedy. It is the story of Ixion who is tied to the wheel of fire for the crime of lusting after Zeus's wife. As with all Greek punishments the wheel turns unendingly.

I have had a number of conversations with fellow sufferers of mental illness around the idea of suffering and the feelings of despair felt by the sense that we seem to be tied to our own 'wheels of fire'. It is tempting to see myself trapped in my own 'wheel of fire' made up of my mental health condition and the cycles of uncontrollable emotional storms which have plagued my life.

The idea of a Fatal Flaw is the closest I can come to describe the feeling of being trapped by who I am and how I feel about my life experiences. Perhaps my understanding of this idea has meant that I have not struggled with the diagnosis of Borderline Personality Disorder as a description of the cycles I have gone through in life. However, there is a flaw in this symbol. It is two-fold: firstly, the character's flaw is usually something like pride, or blind trust. In contrast, for me, the problems I encounter in being emotionally sensitive are not embedded in who I am, but in how I am 'wired' - I'm sure a neuroscientist could explain it better than me - the part of my brain which controls the emotions is more 'trigger happy' than average. So the 'flaw'is not in my personality, but in my physiology - if it were 'faulty' cancer cells, it would be easier for other people, as well as myself to understand - somehow.

Secondly, within all Tragedies there is a fatalism which means the characters are unable, or unwilling to try and break the endless turning of the 'wheel of fire', so their ultimate destruction is inevitable. Even though there have been times when the pain of living with trauma and the inability to manage the emotional fallout from it, has meant that hope has been absent in my life. I have come to the other side. I am not living at the whim of an author for dramatic effect. I am living in the real world with the complexities of real life. That means, contrary to what my feelings and flawed thinking have told me, it is not a life of black and white, either, or. There are degrees of suffering and shades of light of varying degrees.

Pain is necessary, it is a reaction to that which harms us, either physically, emotionally or spiritually. Suffering on the other hand is optional and not unending. This would have made me laugh a few years ago. For me, every day was suffering. I carried with me the pain of not just that day's sadnesses, but also the pain of my childhood and other historic wounds. They were not healing scars but open wounds, which were so sensitive to additional pain, that it was as if I would reopen the wounds with each new, perceived or real, hurt, however minor. For so many who I allowed to get close enough, it was puzzling that my emotional reactions to every day trials and tribulations were so out of proportion that my relationships with those people broke. They could not see that felt I was tethered to the constantly turning wheel of fire. This was my belief at the time - my lot in life is to suffer, simply because I must have done something 'wrong', or because I was intrinsically flawed in some way.

However, having recognised that, as the Bible says, 'sufficient unto the day is the grace thereof' (King James Version), we only need the ability to live that day's pain, I have started to live without that grinding, eroding sense of despair which comes from life in the wheel of fire. I have already survived my childhood, my twenties, my thirties, the past five years, the past month, week, day. Whatever pain contained in my life at that time, was experienced, in the moment, and now passed into history. To keep the pain alive is not to allow it to heal and will prolong my sense of suffering. In the light of this grinding despair, the impulses to self harm and self destruction are more readily understood. What helps me is the ability to recognise that I am not tied to the wheel of fire, I can step off it. I can choose to see my episodes of pain as just that - not the endless stream of misery that I have felt my life to be in the past.

The emotional and mental exhaustion with which I presented to mental health services, is a consequence of my mistaken belief that I had to carry the burden of all of my life's suffering in the present. Finding a way to give myself rest and respite of the unremitting pain I have felt all my life, has allowed me to view pain in the context of what gives my life meaning. For me it is my faith that helps me make sense of the world and my experience of it. For others, there may be different things which bring meaning to life's experiences. Until I allow myself to end the punishment of prolonging my own suffering, I will always be trapped in the wheel of fire. In order to do that, I must see myself with some compassion, to allow my wounds to heal into scars. Reminders of past experiences, without the constant reopening of old wounds which prolongs my suffering.

Hope - the Double Edged Sword

I have neglected my blog here for the past few weeks, because I have become more involved in different projects, which I hope will lead to paid employment in time. It has been a struggle to balance what I 'think' I 'should be doing and what I can actually achieve while managing to maintain my sense of equilibrium. One of the 'jobs' I've taken on is a role as an Expert by Experience. Through engaging with local Mental Health services from a new perspective I have started to reflect on how I have changed over the past five years. One particular new development is that I am finding myself less fearful of hope than I used to be.

Throughout my life 'Hope' has been a concept/feeling/idea that was a double edged sword. Take the pre-Christmas time of year, for example. Every year I would look forward to the 25th December with absolute hope, faith and optimism that somehow my family would be transformed and that from that Christmas on, our lives would be transformed. It's not that I bought into any of the commercialism consciously, just that everyone tries harder over that period and so, a bit like when families are on show, we all tended to be on our best behaviour. Also the only expression of acceptance and love from our parents was in giving us material gifts. At Christmas there was an abundance, somehow I hoped this would continue into the new year, but every year that hope dissipated in the reality that our parents were effectively disinterested in our lives. Except when they were angry with us.

I learned to fear hope, and to avoid anyone or anything which gave me hope. If I could learn not to be 'deluded' by hope, then the pain and distress I experienced with my life, especially when my hopes were dashed, would be less sharply felt by me. It is easier to accept life in the gutter if I've never even noticed that I can see the stars from there, let alone reach for them.

The problem I have faced is that if I am to find a life worth living, then I need to have something to hope in. That there can be purpose and meaning to every experience in life, both good and bad. For me that has come from a faith in a God who is bigger than me and my life. For others, they find it in family and other relationships. This has helped me primarily to make peace with the worst experiences of my life. I can see the bits of my character that have been shaped not by the harm done to me, but by the resilience which has helped me to survive and build a life that I can enjoy. One of the most critical moments in my treatment was when my therapist told me there was help and therefore hope that my life didn't have to be determined by my emotions or my past experiences anymore.

It is easy to assume that the alternative to hope is despair. I have learned that, that doesn't have to be true. As I have learned more and more about the DBT Skill of Radical Acceptance I have begun to recognise that sometimes, it wasn't hope and its loss which hurt me most. Rather it is the fact that I would hope unrealistically, or give my hope to people who either weren't worthy of it, or capable of fulfilling it. No individual person can fill the emotional void left by childhood and adult trauma. Sometimes the skill lies in recognising when hope is not appropriate. There are circumstances, or relationships, which no matter how hard I hope it wasn't so, will never change. It took me a lifetime to realise that even Christmas couldn't change my parents and the results of their own upbringing. Accepting that and letting go of the hope that by wishing I could effect a change, has freed to me to build a relationship with my parents that no longer reopens wounds from the past - over and over.

Another area I have struggled with is the sense of injustice I feel about how vulnerable people are treated. However much I hope that the injustice of government policies related to welfare and mental health funding will change, I must accept that, however flawed the election process, a majority of MPs are not supportive of such compassionate and corporate policies to help the most vulnerable in our society. Sadly, the majority of those who voted, voted for that kind of government. There is no point in me hoping that will magically change before 2020 when the next Election is due. However, I can look forward to that year and hope that if I can share my ideas and beliefs about a just society across, join with others who share those beliefs, then there may be hope that a change can happen. For now, acceptance is the right alternative to hope.

As I have moved away from being completely overwhelmed by my emotions, I have noticed that my view of hope has become an active practice of wise mind. Hope is an emotion, I feel it in my gut. However, I need to make sure that the facts of any given situation need to confirm that gut feeling for it to be a force which drives me forward. Unfettered hope, hope that is built on a denial of the realities of the situation is a false hope and it is that which hurts. Hope grounded in substantial, realistic understanding of what is going on around me, an awareness of what I and others are capable of, has a better chance of being fulfilled. Naturally, there are still times, because no one can predict the future, when hope is disappointed, but if we can consider the prospect of disappointment ahead of time, then rather than wreaking wholesale emotional devastation as in the past, it is something that we can both survive and build on.

From Both Sides

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:
http://www.amazon.co.uk/gp/product/1515016234?keywords=Breaking%20the%20Silence%20Polly%20Fielding&qid=1436866504&ref_=sr_1_1&sr=8-1

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.