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.

The WCA, My Recovery and Me (Part Two)

Two months after the upset caused by the process of filling in and sending off the form (ESA50) (http://bpdlifeinthemoment.blogspot.co.uk/2016/04/the-wca-my-recovery-and-me.html) and five months after the initial letter landed on my doorstep, another official envelope arrived instructing me to attend my 'face to face assessment'. I had two weeks notice. I do not feel like reliving the experience of the assessment here. I have previously explained the impact of the WCA process on my emotional stability. Given the length of time taken from the start of the process to the actual assessment itself along with the usual day to day pressures and some pressures related to having elderly infirm parents, struggling financially, having plans to work towards more long term income solutions fall through, it is hardly surprising that I have found myself in a period of 'relapse' and was referred to the Crisis Team. Thankfully, the support and skills I have worked hard to develop kicked in and I have not had to have any further referrals to Mental Health Services.

I remain emotionally vulnerable and raw. I am moving myself back to the basics of recovery which helped me to get this far. I don't have the emotional wherewithal to explore the emotional fallout of the assessment, which was two weeks ago now. I do however, have some observations to make about a process which is not fit for purpose. For those implementing it and those of us with the misfortune to have to rely on any support resulting from it, should we be found not to be selfish, malingering, charlatans.

1) My assessor was as helpful and compassionate as she could be under the circumstances. This reinforced how ill conceived the WCA process is. She was faced with the emotional outpourings of both me and my friend, who attended, thankfully, to support me. We encountered at least one person in the waiting room in absolute distress, but with no company and the assessor seeing her off with just a tissue and some kind words. Who, I wonder, has to pick up the pieces?

2) The first letter arrived at my home at the end of January. It is now Midsummer's Eve and the process is still not complete - I anticipate I will get a decision some time in July. Should I be placed on the Work Related Activity (WRAG) ESA Group I will immediately lose £30 per week and be forced to undergo endless applications for jobs which are ill suited to me or my skills and experience, or risk losing all financial support through sanctions. If I choose to appeal (which we are officially told takes six months, but in practice takes much longer) all payments will be suspended pending the outcome - the DWP has now recruited and paid for a team legal experts to fight these appeals as they were losing at a rate of 85% of decisions being overturned on appeal. This is not about saving money or becoming more efficient or encouraging people like me to be confident enough to return to full time employment, but about dismantling a key component of our welfare system.

3) I am due to undergo the same process from November for the Personal Independence Payments (PIP) which are due to replace my current Disability Living Allowance. At this rate, my 'review' of benefits will have taken well over a year to complete. It has already set back my recovery and my progress towards meaningful employment, by at least three months. My question is, given there are two teams situated in the same building in my local county town, why am I going to have to complete exactly the same questions, provide exactly the same information about exactly the same conditions (albeit a few months later) for payments which have historically been inextricably linked, given that one (DLA) results from the assessment of physical and mental needs performed when applying for or reviewing. Once again, I am forced to conclude that the DWP are prepared to go through the tendering of contracts, with the costs that go with it, invest in putting those with disabilities through a system which is designed to 'test you to destruction' as my friend observed, in a bid to 'root out' malingerers.

There has to be a better way. When Benefit Fraud accounts for less than 1% of the Welfare Bill, when disability benefits are a tiny fraction of the total welfare budget compared to the State Pension and Tax Credits; just because I can be easily dismissed as 'emotionally unstable','mentally ill' - an outsider, does not mean that I and others struggling with long term, complex mental illness do not deserve better.