Life Post DBT therapy - self help or no help?

Since being discharged from Mental Health Services in the summer, my work as a Church Mental Health volunteer has exposed me to responses to impending discharge that are different from my own. Again and again, I have encountered an expressed need to continue in a 'safe', supported environment. Usually, this has resulted in people seeking to develop and/or join peer support groups. For those who have gone through hospitalisation and intensive group therapy, there is a shared experience and understanding of certain conditions which makes peer support highly desirable. I myself have found the online peer support available through twitter and blogs to be invaluable in my ongoing DBT practice.

Certain websites have been a real help too, by providing encouragement, advice and practice from other DBT graduates. In particular, dbtselfhelp.com is an excellent resource. I have found the following article about 'The Self Help Myth' has challenged a number of assumptions I have made about the need for ongoing contact with 'peers' following graduation from the main DBT programme: http://www.dbtselfhelp.com/html/the_self_help_myth.html The article presents an interesting discussion of both the problems and solutions to the self help conundrum:

"When we first presented this idea [of a Peer Led Graduate Group] to Marsha Linehan, she told us right away that it wouldn't work because of the nature of BPD (or people with similar types of diagnosis'). People with BPD have trouble with boundary confusion as well as inappropriate behaviors when triggered by stories similar to their own and have the tendency to be addicted to crisis. We balked at this response, certain that we could make it work anyway if all the participants were focused on a goal.

But Marsha was correct. The boundaries required for leadership were outside the skill set of group members. Triggering behavior often required professional intervention. Plus, when feelings were hurt or when someone felt panic, we were unable to provide the kind of validation offered by professionals. In a peer-led situation without training it was unrealistic to ask our leaders to rise above their own lives and issues in order to exert control of the group. We even tried creating a set of rules and circumstances and guidelines that groups would have to follow. But truly, the nature of the diagnosis is ill-suited to a peer-led environment."

Helpfully, DBT participants in the USA have had a number of years to develop thinking and experience about DBT so they have tried, failed and tried again to find a way forward. It is encouraging that the same website has followed the progress of different post DBT groups in the USA which seem to be having more success. However, nearly all have had the active participation of Mental Health professionals.

My attitude to peer support has been different to some. Because I belong to a strong faith community outside of the therapeutic setting, the main aim of my development of skills, has been to allow me to build a strong social network in 'the real world'. I found the protective environment of services to be a haven to which I could retreat when I was struggling to learn and practise the DBT skills when they were new to me. For some time now, I have felt it's time to move outside of that 'safe zone'.

For me, it was crucial to keep my focus on what a 'meaningful life' looked like. That included being able to build and maintain relationships that were not dependent on a shared experience of mental illness. Although, I know that most of my new friends have had a willingness to learn about my condition and the skills that help me manage it, so I have learned that some other people outside Mental Health services, are prepared to accept me as I am. Some of my former friends have never been able to reconcile themselves to the reality of my ongoing emotional and psychological struggles and I have had to accept that they are lost to me. That has allowed me to practice the DBT skill of Radical Acceptance.

If my therapy and recovery only work in helping me develop relationships with people who struggle with the same diagnosis, or with the people who work in those settings, then that is not allowing me to develop a balanced social life. I think that this issue is shared across all mental health conditions. Stigma and the fear of rejection, naturally mean that people will gravitate to 'safe' places and people. Unfortunately, the structure of services in the past has kept people in a cycle of discharge, relapse and return to 'safe' therapeutic settings. Perhaps, this goes some way to explaining the revolving door experience of people with BPD.

Having said that, there is a need for a stepped progression from group therapy towards life after discharge. Peer support clearly has a part to play in that progress. I think that peer support works if it keeps me focused on the positive practice of my DBT skills. If I can 'recharge' my mindfulness batteries ready to return to the world outside. If I am encouraged by my peers to keep developing the skills which will enhance my life and help me to build a 'life worth living'.

These concerns were foremost in my mind when I wrote a short five week programme for our church. Finally, working alongside the Vicar we developed a series of workshops aimed at helping people coming out of Mental Health services, to integrate into the community. It is not designed to be an ongoing support group, but can help by introducing people with similar experiences, although mostly a range of diagnoses from Bipolar Disorder to Anxiety and Depression. I have found that initially people were disappointed that it wasn't a 'support group', but in the last year that we have been running it, group members have developed positive friendships within the groups which have continued after they have completed the course. In addition a number have been happy to introduce others to the course and have themselves ended up helping me to run public events, such as our Suicide Awareness Day in November.

I know some people reading this will disagree with this approach. Everyone's experience is different. The pace of recovery and progress out of services varies according to each person's experience. I don't legislate for anyone else, but, for me, the growing sense of confidence in my day to day DBT practice as well as my growing social life is a testament to the fact that moving out of my safe zone has been positive for me.

Webs of Care

Since I started treatment I have come across requests from researchers for service users to take part in interviews about different aspects of the treatment received. Recently, I received one such request specifically looking at the discharge process from Dialectical Behaviour Therapy (DBT) and how I experienced it. It has made me reflect on my experience and consider questions such as, was this ending easier than previous endings in my life? How come I have found the removal of formal support easier to navigate than others I have spoken to?

On reflection there are a number of factors that have worked for me:

1) I had become very familiar with the Dialectical Behaviour Therapy model a couple of years before I was even diagnosed with Borderline Personality Disorder (BPD). After my diagnosis Marsha Linehan's theory that my symptoms had developed as a result of the confluence of biological and social factors actually made sense to me when I looked at my life story. This gave me confidence in the therapy when I was finally offered it. Because I had read Marsha Linehan's book behind the practice, I also understood the rationale of the skills training and one to one elements of the treatment.

2) From the beginning the message was consistent within the group and individual sessions that DBT would not and could not offer me a cure for my emotional distress. The first six months involved a process of me learning the skills to 'accept' the fact that I could not change the roots of my symptoms, but I could learn to manage the most damaging behaviours I had developed in an effort to survive my life. In addition I learned that I could also learn skills to help me manage the emotions behind the behaviours, no matter how distressing or painful they may feel.

3) Developing the ability to use DBT skills outside the group and one to one settings is a major objective of the therapy. So homework was central to the success of the therapy for me. I was shocked in talking to others with similar ages and symptoms who had undergone different therapies that their overwhelming feeling when approaching discharge was that of 'losing their family'. I have managed to build up a growing group of friends outside my therapy group so that, at discharge I did not fear that my whole social life was ending too.

4) Most significantly I recognise that throughout my life I have had strong webs of care. There have always been at least two or three significant relationships during periods of extreme crisis which have provided sufficient safety to prevent me from ever being admitted as an inpatient. This meant that I did not have this hurdle to overcome. If my place of safety becomes my default rather than a last resort, then my behaviours will centre frequently around accessing that place.

A Few Things to Consider about Weaving Webs of Care:

A) The isolation caused by mental illness means that at the worst of times we can be hanging by one slender spider thread. However, if you take time to observe spiders in nature, or in my lounge at the moment, that single thread is more than strong enough to hold the spider, no matter how high the ceiling. For me, many times in my life my single spider thread holding me up was a barely perceptible faith that I was held by a God who was capable of coping with my outbursts and emotional pain. In those times I didn't want any complexity to my relationships just a sense that something or someone was holding onto me. For a lot of BPD sufferers that one thread becomes a human relationship, either personal or professional.

B) At some point all therapeutic relationships need to end, if they are to effectively create independent functioning people. That means that the single central thread needs to be woven into a growing network of relationships. I started with two friends, one of whom had known me for over twenty years and, significantly, my pets. I could trust myself to look after my pets without being judged and my friends were close enough geographically to help me build routines - consistency takes time and repetition. In the beginning these relationships were practical and centred on meeting basic needs like walking the dog, making sure I was looking after myself and offering me meals. They didn't overwhelm me, but on more than one occasion they were able to step in when hospital admission might have been the only option and offered me a safe place and a bed for a couple of nights. These friendships were an essential part of my care plan and fitted together with the professional relationships I had.

C) As I developed DBT skills I was encouraged to look outward and to participate in the wider universe. By volunteering on a limited basis I developed a wider web of caring relationships and contributing to the needs of others. Apart from distracting me from my own distress this allowed me to enter relationships gradually rather than me launching myself at people and leaving myself psychological naked having given too much of myself away. By widening this circle of relationships I took pressure off the therapeutic and my central, close relationships. One mistake I had made in the past was putting my 'eggs in one basket' and investing all my emotional energy in one relationship. Inevitably, on both sides these relationships would implode with the pressure I placed on them. It takes a village to support me.

D) Usually, volunteering introduces you to wider communities. I became a part of a local community so there are webs of people who are acquaintances but who bring to me different gifts. Each relationship holds in it potential to either hurt or help, but because I no longer invest in all or nothing single relationships, if someone in the other layers of web hurts me, the stronger more central relationships that I have come to trust have the capacity to hold me, not simply because they are strong, but because I am also capable of using my DBT Interpersonal Skills to manage the normal ups and downs of friendship and caring relationships.

I have searched on-line for a web representation - my drawing is rubbish. This one crystallised for me how far I have come in developing networks of people who form my supportive relationships. It helps me cope with life and those people who would drain or hurt me - they will always be there, but they no longer have to have the power to drag me down. As I've grown stronger and started recovery I'm able to include some renewed friendships and family relationships that I can now manage and vice versa. It's a helpful exercise. Here are some things to consider as you fill it in or create your own web:

Ask yourself: 'Do I have a web of care?'

* If the answer is yes, put people into your web and show their importance and closeness to you by how near they are to you at the centre of the web.
* If the answer is no, ask yourself what is the single relationship that you are holding onto, it may not be human. Then honestly consider friendships that may have slipped - are they lost forever? Or could you get back in touch?

* If people scare you, consider swapping them for pets. My first pet was a hamster given to me by a friend at a time when a lot was going wrong - that wee chap really lifted me and gave me a focus outside of myself - a break from feeling emotional pain.

* If you have a good relationship with your CPN, Support Worker or Therapist talk to them about how you could find other webs of relationships to weave into your life. Taking advantage of the NHS Activity for Life programme has opened up the local leisure centre as a place where I can meet with people without any expectation of me emotionally. If I get to know people better (which takes time), then that's a bonus.

Above all remember, no matter how lucky you think others are with their partners or families and friends; it is still possible to be lonely in a crowd. Building quality rather than quantity takes time and not a little bravery.

Putting the Jigsaw Together - Learning to fit the pieces of My Life together

One of my favourite puzzles as a child was a much loved and very battered jigsaw puzzle of the teddy bears' picnic. In the midst of a chaotic life the satisfaction of putting the last piece in place to make a familiar picture was so satisfying.

In the past couple of days, I started thinking about my life as a jigsaw - it's not a new thought for me, I loved Carole King's 'Tapestry' album and really loved the lyrics of the title track. Tapestries are things of beauty woven from disparit bits of thread or wool. Looking at the back there is no sense, no beauty, only a chaos of unconnected threads. Only when the picture is complete and viewed by taking a step back, can the onlooker see any beauty or sense from it.

So it is with my life, particularly when considering the part my MH condition has played in it. I mean who really wants to acknowledge that any good can come from something so difficult and painful? Whether I like it or not, for good or ill it is one of the things that has shaped the person I am today. A few years ago I actively hated that person to my very core - in the reflection of other people's treatment of me, I could see no value in my being.

Having battled my unseen and unnamed demons for many years my life resembled the jumbled mess of pieces when I first tip a jigsaw puzzle from the box. I could see the perfection I aspired to, almost like the completed picture on the front of the puzzle box. Somehow, knowing how I wanted my life to be made my struggles all the more painful.

I don't know my bookshelf is wonky until I put a spirit level against it. I think it is part of being human, some masochistic streak in us which means we always compare ourselves with others. Particularly, in regard to the life I've lived, I used to resent and envy, in equal measure, the 'ease' with which others seemed to float through life. It has taken me a long time and honest conversations with many friends and family to realise that no one has a perfect life. If I set that as my goal, particularly when learning to live with my mental illness, I will constantly feel like a failure.

I have spent the last nearly five years learning about BPD and how I can manage to live with it, without it ruining my life. When trying to complete my jigsaw puzzles I cannot simply start to put pieces together without first having an idea of the picture I am trying to create. Before I can know if I am managing my BPD I need to first know what a 'good life' means for me. As anyone with BPD knows this is so challenging, because one of the basic building blocks of life - our identity - is one of the central aspects of life that are disrupted by this condition. My sense of who I am has been so warped and distorted by my experiences, particularly in my experience of being parented, that, nearing my fifties, for the first time I am in a place where I can begin to define what makes me, me. For as long as I can remember before my diagnosis, my sense of self was created by what was being reflected back to me by others. Just as the moon's brightness depends on the brightness of the sun that it reflects, so how I felt about myself became a reflection of how others perceived me.

I am in a period of experimentation with new people, experiences and attitudes to life. I am learning to define my own responses to relationships and situations, rather than rely on behaviours and reactions I have learned from avoiding the emotional fallout of my BPD.

Finally, I have stopped looking to rebuild my life on an unattainable model. Whether that is the life I wish for, or someone else's life, that is not the template of my life as it is. My life as it is has parts that work well together, like my enjoyment of walking and my dog - they just naturally go together. Other parts of my life I need to adapt to - my BPD is one of those parts. My life has changed out of all recognition from five years ago. My goals in life are different. I now accept and enjoy aspects of my life I could never have ever imagined accepting previously.

Getting rid of my car, having never been without one since I learned to drive at the age of 17, has taught me that my problem solving skills are very good. I am learning to trust and realise that I do not have to 'bare my soul' for people to accept me. I don't need to explain my reasons for things such as not going to social events. In the past I would either force myself into these situations, then resent the friends I was with, or I would cancel and then over explain in a bid to avoid rejection from my friends. This has given me a new freedom in friendships, where every interaction is not a make or break, life or death decision.

Although I am at the end of my time in Mental Health services (I hope for the long term, but who knows?), I know my life is not completely 'sorted' - despite the panic inside I am realising that the long term nature of BPD means that no matter how long I had been in services I would never have a completed jigsaw with a perfect life at the end of it. When I remind myself that my jigsaw is still in progress and the last piece will never be put in place until my life is completed, I can stop feeling that I have 'failed' at treatment. I can stop putting pressure on myself to have everything in place in time for my last Care Co-ordinator meeting. I can stop panicking that I don't know what job I will do in the future. I don't have to beat myself up that I don't have any long term relationships on the horizon.

Recovery for me no longer means that I have everything sorted from my childhood, or that I have a perfect life, or that I will never be troubled by my condition again. That puts way too much pressure on me along with the fear of failure. I don't have to pretend I have it all sorted, or that I have a perfect life. I do recognise that I have moments of contentment and happiness, more often than in the past. I am no longer suffering the physical effects of long term anxieties and depression, although I remain on medication which maybe has to continue as part of my treatment at the moment. My life jigsaw is not complete, but it is no longer a jumbled mess of pieces, there is a more cohesive picture of me emerging - that's something that is satisfying.

The Robinson Crusoe Effect

When I was young I used to enjoy television on a Saturday morning and one of my favourites was an old black and white dubbed version of Robinson Crusoe. Apart from the ace title music I loved the story of a man who was on an island and was desperate to get off it. My child’s view was that, of course Robinson’s efforts were all about getting off the island and back to society. However, when I studied the original novel at University I realised that Robinson’s story was much more complex than that. After many years he had adapted to life on the island until the thought of rescue in the end became something that was bittersweet.

Life with a mental illness has been described in many different ways and one which resonates with me was from Sylvia Plath, the American poet. In an autobiographical novel describing her lowest points in her late teens and early twenties she described her life with Mental Illness as being like life inside The Bell Jar. I have related to this on many occasions, as sometimes it feels as if I have been trapped in a vacuum sealed glass jar; others could see me, but I had no way of making them hear me. At times the best way I could find to describe this was that I was 'inside my own head, screaming'. If you have felt the isolation brought by depression and other mental illnesses you may relate to this sense of being cut off from the rest of humanity.

Like Robinson Crusoe, depending on how long you may have struggled with mental illness, you may find yourself feeling in two minds about ending the isolation. On the one hand, emotional distress is exhausting and there is little energy to cope with others. On the other hand, remaining isolated from others only confirms some of the more negative thoughts about yourself and stop you from receiving emotional energy from others.

For me life on the island of Mental Illness was painful, but ultimately, I was 'safe' from humanity. Basically most of my emotional and psychological wounds were the result of the actions of others. This along with the combination of my biological predisposition has meant that I have battled psychological maelstroms all my life. When I was diagnosed and offered 'shelter' in MH services, I was able to find some respite from the dangers of relationships. I have been quite happy not engaging to any emotional depth with anyone over the past nearly fourteen years, since the last traumatic breakdown of a relationship. Being 'in treatment' has meant that I have had a focus on managing my BPD and it was a convenient excuse to ignore the need to engage with anyone outside my therapy bubble. Except, I have reached a point where I feel strong enough to manage relationships. I don't trust everyone yet, 'In God I trust, all others have some way to go to prove themselves...' But I have let some people in and it's been ok. I know I am healing because I can say I am fond of certain people and look forward to their company. I still enjoy my times of solitude, but I am no longer in danger of going for weeks at a time with no human contact. I would say that I have learned that in order to cope positively with my relationships and friendships I know I will continue to need those times on my own to recharge my emotional batteries - people I think will continue to tire me.

I have now been given a date for my final discharge from Mental Health services. I know that it is testament to the journey I am completing (at least this stage). I am happy that there is equilibrium in my life. It's not perfect. I still react emotionally in situations that other people take in their stride. I continue to battle some of the demons from my past. I have developed new skills and rather than my BPD (Borderline Personality Disorder) controlling me, I am feeling that I can ride it's storms and maintain a level of stability which will allow me to step off my island and sail back to 'the mainland'. However, I am aware that I have been sheltered on my island, I have had safe places and people to whom I can speak to about my ongoing battles with my emotional extremes. I am at the point on my journey to recovery where I can see the docks looming into view and will face the prospect of walking the gangplank back to the life I was ripped from about five years ago. It's a scary thought.

However, I'm not going back to the same country. Anymore than Robinson Crusoe would recognise the world that awaited him back in England, following his many years on the island, the place I left behind no longer exists. Many of the friends I had then have fallen by the wayside. Some gave up on me, some have considered me 'lost at sea' and others just haven't been that interested in maintaining relationships in general. There are other friends, though who have strengthened the friendships with me because we have weathered the storms together. They have patiently waited for me to return from my desert island. These relationships rather than the therapeutic relationships are what will sustain me through my recovery.

I still face the pain of the final separation from people who have been really important to me, who have helped me, who have been privy to the most intimate details of my heart and soul. That's not an easy transition to make. In the past I have moved on too quickly, I have not allowed myself time to grieve friendships and relationships. The process of leaving services is yet another opportunity to learn a new way of doing things. Of allowing myself to feel grief and know that I can live with it. What is different about these therapeutic relationships is they have been honest, straightforward and have delivered what was promised. When we have had issues I have felt confident enough to be honest about the impact of mistakes on me - what has been refreshing is the level of self confidence in my CPN and therapist which has meant that they could own mistakes and we could work through the implications together.

My journey out of services has above all, been well planned. This ending has not taken me by surprise, and though I can acknowledge that it will be a difficult transition, I know I am ready to return to life after the island.