How Safe is Your Church for Me?

A couple of weeks ago I gave a talk at Lancashire Roofbreakers. The group was set up just over a year ago and was originally called the Lancashire Churches Disability Network, which was quite a mouthful! For those who may be wondering where the new name comes from, it refers to the story of a group of friends who carried their paralysed friend on a bed to see Jesus. Of course he was visiting a family home and crowds made it impossible for the friends to get to Jesus. So, they climbed on the roof (look at Middle Eastern homes - it's entirely practical!) broke through and lowered their friend right in front of Jesus - hence the term Roofbreakers. The aim is to explore and find solutions to the problem of inclusion for those with disability in accessing and being included as full members of church communities.

As many readers of my blog know, Mental Illness is the invisible disability and it is often neglected when discussing accessibility in churches. The following is a blog I have written as part of the report on the morning of talks, which can be read in full @includedbygrace on Twitter, or google Lynn McCann, a brilliant champion for those with Learning Disabilities with a particular focus on those on the Autistic Spectrum. Lynn has been a real encouragement to me as we have met when her timetable allows to discuss the common ground between LD issues and Mental Health issues.

The following is a summary of my talk:

How Safe is my Church?

It is interesting to consider how quickly our minds move towards physical and accommodation issues when considering this question. Or am I a minority of one? I find it interesting when listening to others whose concern focuses on other disabilities. The need for ‘inclusion’ seems to equate to making sure people can all join together in one big crowd and how we manage to make it physically possible for that happen. This includes the size of our buildings, accessible doorways, seating etc.

As someone who has grown up in churches of all shades and opinions and who lives with a complex mental health condition, the focus on the physical surrounding is irrelevant to me in helping me to feel included within the Church Family.

My biggest problem with Church, is the people. Not the attitude I encounter (although stigma remains a massive issue) but the fact that Church by its nature forces me to spend time with large numbers of people. Let me explain why this would be a problem to me. I have a diagnosis of Borderline Personality Disorder. It is sometimes now referred to as either Emotionally Unstable PD or Emotionally Sensitive PD.

Marsha Linehan, an American Clinical Psychologist who has created an effective therapy for BPD called Dialectical Behaviour Therapy and who finally admitted she herself shared the diagnosis, has summed up the experience of living with BPD as follows:

‘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.’

Let’s just pause for a moment and imagine that the presence of other human beings, of any number can feel excruciating, then let me ask some questions about ‘how safe’ the way we do church, especially on Sundays, feels to me.

How Do We ‘Do’ Church?

 Medieval

If you spend any time visiting the large spectacular buildings of our historic churches and cathedrals, we can observe how the medieval church gathered. It was often the largest building in towns and villages and therefore was used for mass gatherings, there was no seating. As a modern church, we have inherited buildings from earlier generations. From a purely appreciative perspective, it is fantastic to know that there is such a ‘Cloud of Witnesses’ who have gone before us. Have they always worshipped solely in large spacious buildings, in large crowds, or has there been a different way of gathering together?

 Victorian

We have a legacy of physical spaces which force us to look at numbers over quality of relationship. What then, of the timetable of fellowship in each week? The Victorians put pews into the large medieval structures, or mimicked them by building huge structures in the medieval image. That means that it would feel like a waste if our main meeting together didn’t make use of this accommodation. What about two large gatherings every Sunday? Evening services effectively developed when Sunday Schools were at their height and churches needed to feed their Sunday School teachers spiritually. Is the way we plan services on a Sunday effective for today’s needs?

 Big Crowds

When I am invited to join in with my church family I am caught in a conundrum. I know that the Bible exhorts us to ‘not give up meeting together’, but why do our gatherings focus primarily on large groups of people?

We like numbers, in a society where Christianity faces many challenges sometimes our need to gather in large numbers can feel like a form of defence. It’s okay, we may say, if our large Victorian building is full, especially every Sunday. We feel safe in large groups. They’re anonymous.

If the presence of people inspires anxiety and panic in me, is it safe for everyone? What would happen if our focus moved from joining together as the whole church body (particularly in large and growing churches) and looked at how well supported our small groups are? It’s easy to escape the challenges of living in fellowship if you only attend the large, well-attended meetings particularly on Sundays. It also allows us to absolve our responsibility to be an inclusive church to the Welcome or Leadership Teams.

 Family Focused

For many with Mental Health issues, families are not safe places. I need you to teach me and model for me what a loving family can be. Is the emphasis on children, and the importance of family in the way you do Church, hurting people who have internal wounds which need to be healed? I found it interesting at our meeting of Roofbreakers how much time was spent discussing the needs of children in church with Learning Difficulties and the practical solutions offered to help them stay in Church. Many of the solutions were on drawing people into the larger group. The prospect of only being able to access Church if I am prepared to manage my emotional responses enough to ‘cope’ with being in groups of 100+, terrifies me so much, most Sundays I either have to put in all my energy to staying once I’ve managed to get myself up, to the building and through the door, or I opt out.

How Can we Do Church?

 Redefine

Can we redefine church from being the gathering of EVERYONE in our circles on a Sunday to a broader definition? How often do we enjoy being able to share in the Spirit with the struggles of the church worldwide, while we neglect the regular remembrance of those who are housebound, or unable to join with us due to disability of any kind. For me, the ability of friends in ones, twos and small groups to meet together and support me spiritually is vital to me feeling a part of the church.

Do we need to look again at where the church started? 3000 were suddenly added to the church at Pentecost, where did they all end up meeting? They didn’t have large buildings, nor did they have the ‘evangelical timetable’. You know the one: Sunday is Church, Monday is Ladies’ Prayer, Wednesday is Small Groups, Thursday/Friday is Youth.

Where is the idea that Church is ‘where one or two are gathered in my name’, or ‘Whenever they met together’. If Church is only Sundays (I know and have heard many times, ‘Church is not the buildings but the people’) then is the way we define Church out of sync with what we believe about what Church should be?

 Break Down the Numbers

What would happen if our focus was more on organising ourselves as mainly meeting as church in smaller groups. What if our gathering of the ‘whole’ congregation became less regular, on a monthly basis, and the main point of teaching was within smaller groups? What if we sold our buildings off, or changed them to be an essential resource for the community, thereby having a daily presence of the Church in witness to the world?

 Challenge Stigma

The best way to challenge any prejudice is to introduce the bigot to a real living person with whom they have to interact. If you want to know how my experience of life and faith differs from yours, ask me. In smaller groups it is easier to break down barriers. Again if Church only means the big Sunday Services, it becomes very easy to pat me on the head and distance yourself from what I’ve been banging on about at the front. Especially, if you misunderstand what Mental Illness is and how it affects people.

 Relationship

My understanding of the Christian gospel is that relationship is central to it. In the beginning, God established that ‘it was not good for man to be alone’.

Before we are in relationship with God there is a vacuum. Emptiness and isolation are common symptoms of a number of complex and more common mental illnesses. It follows then, that the Church has hope to offer to people with Mental Health issues. God understands that we were made for relationship.

Is the way we do Church at the minute designed to help us develop effective and satisfying relationships with one another? I often have conversations with people about how dissatisfied they are with the lack of depth in their Church friendships. That’s because we fail to apply God’s principles to our Church relationships. We emphasise our relationship with God, rightly and stress the importance of time spent learning more and more about Him through prayer and Bible Study.

The Church is Christ’s Bride, that means that every one of us form a part of one body, we are all united to one another in Christ. Somehow, I think we have decided to accept that this mysterious, spiritual union, somehow negates the necessity to learn more about one another, in fellowship.

How do we do that? By spending time with one another, for me the most effective and safest way to get to know my Church Family is in ones and twos. When I spend more time with you during the week, then there is a shared understanding when we come together for worship and fellowship as part of the wider family. If I can see that I am accepted, that there are reliable relationships and true friendships, then it makes the struggle to get to the bigger meetings worth it. How important, really is relationship and enabling the building of in-depth relationship, in the way we currently do church?

I am not offering any answers. I recognise the inherent challenge in much of what I have said. However, I hope it helps us to engage with the thorny issues around probably the most isolated disability group in our churches. Solutions and hope for relationships are welcome.

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.

What on Earth is DBT?

I have found myself being asked this question a few times by people who follow my twitter feed or this blog. It's funny how easy it is to obscure your message by the use of jargon. I actually enjoy explaining what DBT is and what I have got out of it as a treatment - it has been a massive positive in my life. Unlike the question 'what does the borderline in BPD mean?' Not easily answered as frankly most people now don't actually agree with it as a descriptor of this condition - anyway that's another topic altogether and if my DBT has taught me anything it is not to be distracted by thoughts that are not relevant to the here and now.

Dialectical Behaviour Therapy (DBT) was developed by a clinical psychologist in America called Marsha Linehan (do google the name she has produced numerous videos and articles about her therapy) in the 1990s. It is a combination of mindfulness techniques and Cognitive Behavioural approaches to help those diagnosed with Borderline Personality Disorder learn to understand and control the extreme fluctuations in their emotions.

As a replacement for BPD as a label some have taken to referring to the condition as either Emotional Sensitivity Personality Disorder or Emotional Dysregulation. As a descriptor I find the latter preferable. Whatever term you choose to describe it, what it meant for me was a see sawing of moods which could cycle from being 'hyper', excitable, voluble and energetic to extreme feelings of depression with a high degree of suicidal feelings within the space of a few hours, several times a day.

As you can imagine such constant cycling of emotions can be extremely draining and distressing. A key hallmark of the condition is poor impulse control accompanied by strong urges towards self harm (or self destructive behaviours) and suicide. Throughout my life, until I really started to practice my DBT skills, the idea of killing myself or harming myself was an almost constant presence in my consciousness.

DBT is not offered as a cure for these issues, but seeks to offer the sufferer the means to interrupt and then control the emotional storms which are the moment by moment experience of BPD. One important point to make is that no treatment in Mental Health should be considered as one size fits all. This is why the individual sessions of DBT are so crucial for each person. I can only decide what skills I need to master in order to manage my emotional life. Because it is a skills based treatment it requires a major commitment, not only during the time in group and with your one to one therapist, but, more importantly, after discharge the treatment will only work long term if I commit myself on a regular basis to remind myself of the skills and to practice them.

I remember my GP expressing her frustration with patients who had been referred to the Physiotherapist to deal with one condition or another. She would make follow up appointments to see them after six weeks or so. 'How's it going?' She would ask on their return. 'No use whatsoever'. She would persevere 'Really?'. 'Oh yes, I went twice and to be honest the exercises were alright when I was there, but then the complaint returned in between visits.' Now, it seems to me that the GP shouldn't then have to explain that these exercises should be repeated daily in between 'visits'. If I think after discharge 'well that's that then' not practice or take seriously the skills I have worked so hard to develop, during my time in therapy, then I don't think I should be surprised if I start to lose control and become a prisoner of my emotions once more. I need to keep going with it.

So what are these skills?

The core 'treatment' is a weekly skills group along with a weekly one to one session. In the group we are introduced to the skills and encouraged to start to use them to manage day to day issues as they arise. In the individual sessions there is an opportunity to discuss in more detail the skills that are most useful to me as an individual and the key parts of my emotion dysregulation I should be working on.

There are four main modules:

1. The Core Skill of Mindfulness runs throughout the length of both the group and individual sessions. (typically one year, although some centres are trying to offer 6 months which only allows one cycle of the skills modules).
2. Distress Tolerance - skills to help me manage when I am in distress without reverting to self destructive and self harming strategies that I may have used all my life. (here the importance of developing familiarity over a longer period of time becomes clear).
3. Emotion Regulation - longer term skills to enable me to recognise what feelings I am dealing with and to develop strategies to maintain a stability in those emotions. (these have become more regularly used by me since my discharge in seeking to maintain my progress with managing my emotions)
4. Interpersonal Effectiveness - anyone who has BPD or has lived with someone with BPD will tell you that the emotional maelstroms inherent in the condition wreak havoc in all sorts of important relationships. Reading other people is not a natural skill that I possess because of my invalidating upbringing. This is an area I need to consciously be aware of and that I need to practice constantly in order to counteract the natural urge to respond to my instinctive (often mistaken) feelings about the relationships around me.

I completed a one year programme, during this time, each module is introduced and after six months, and a review of progress, they are repeated and reinforced both in the skills group and in the one to one sessions.

This is a very sketchy outline of DBT, there will no doubt be many other questions.

Such as, what do I mean by Dialectics? Essentially, my understanding (which will be limited to my own experience) is that it seeks to bring stability and balance to my emotional life so that I can enjoy the parts of my life that are to be enjoyed, without expecting everything to be 'sorted' or 'perfect' (I've covered this in my blog on recovery and what it now means to me here: http://bpdlifeinthemoment.blogspot.co.uk/2014/06/putting-jigsaw-together-learning-to-fit.html

The following are links to helpful websites about BPD and DBT: http://www.dbtselfhelp.com/ has really useful exercises and videos for the practice of DBT skills and Mindfulness, www.my-borderline-personality-disorder.com (Healing for BPD) is an online version of DBT but there are also really helpful articles and examples of using DBT skills in recovery. There are many other websites that offer useful mindfulness videos or self soothe ideas etc. Just be selective and be aware nothing will bring about any miracle cure and any skill needs a lot of time and hard work to develop.

I think the best way to find out about Marsha Linehan who has an amazing story about coping with BPD herself, is to just google her name.

Access to DBT groups in the NHS seems to be very limited. I have been so lucky to live in Lancashire and to be able to access the Central Lancashire DBT Team for nearly 18 months. I am so grateful for a local NHS Trust (Lancashire Care Foundation Trust) which has seen fit to offer not only this, but also other therapies for BPD. Having not meshed with one previous therapy, I only had a waiting time of one year to access DBT. I am aware that not every area has so much to offer to what is a cinderella condition, but hopefully, if I can encourage others to ask about it and whether it is available in their area then, maybe, some 'up high' might begin to see the light.

For me, having my discharge report set down in black in white that I have not self harmed for over 18 months has helped me to see just how far I have come. My time in the group was an important part of my journey but I haven't arrived, I'm just moving on. I continue to work on my Emotion Regulation skills, occasionally I use my Distress Tolerance skills when an echo of my past takes me by surprise. Rather than creating dependence one of the best things DBT has given me is a developing confidence that I am ready for life without Mental Health Services, that I am capable of maintaining and building on the progress I have made so far and that even, if I may never have a life without my turbulent emotions, they will never have to overwhelm in the same way again.

I will be forever grateful for the visionaries behind this great innovation for BPD sufferers.

My 'Me Against the World' DBT Playlist

Some days, regardless of paranoia, it seems the whole world is out to get me. The depth of sensitivity of the BPD person cannot be overstated. Hence, when some sleight or unintended (or intended) insult comes our way, the impact on us is devastating and longer lasting than for the average person. Marsha Linehan has expressed the extent of emotional pain for the person with BPD in this way: "People with BPD are like people with 3rd degree burns ...Lacking emotional skin,they feel agony at the slightest touch or movement."

My problem is with 'apparent competence' and a theatrical confidence, developed through the professional experiences of teaching and probation work over a twenty year period. Because of this 'shell' a lot of people consider that it is not possible to hurt me. Unfortunately, none of us are mind readers and therefore we have no idea of the weight or force with which our words and actions are carried to the heart of another person. Most people have some kind of emotional armour, but as Marsha Linehan's words point out, the heart of the person with BPD is raw and it is as if those hurtful things are hitting an exposed and beating heart lying on a table. It is as if the wounds opened long ago are fresh and, further hurt (however minimal to the average person) feels like salt rubbed into those wounds.

One of the good things about being an 'emotionally sensitive' person is that my own vulnerability has taught me to weigh my words and actions very carefully. I have no idea what devastation I may unleash unwittingly on those around me, because I can never understand fully the life experience of any other person. No matter how similar our experiences may seem.

When I feel the pain of these kinds of moments I know that they are connecting with numberless moments from my life when I have felt abandoned and rejected. These moments have become so much a part of my life, that in expecting, fearing or anticipating it I often create the rejection I fear. I know I act in ways which produce the opposite result to that which I intended. Such is one paradox of being emotionally sensitive - I have written about the toll this 'push-me, pull-you' yo-yo of emotions has taken on past relationships in previous posts.

Although I have completed a period of DBT treatment and am better equipped to manage my emotions than before, I continue to be an emotional 'burns victim', in the process of growing new skin over the exposed wounds. So, more often than not I find myself feeling like the world is out to get me and I feel I am alone in my battles.

Anyone who has followed this blog for any length of time will know that all types of music are my refuge when I am struggling with emotional issues. So it is in this case - I have a range of songs which allow me to express my grief and sadness, while at the same time reminding me that I am a strong person to have managed to survive to this point in my life. Sometimes we all need reminders that even if it is not just our paranoia, when we feel alone and embattled, we have more fight in us than we thought.

1) Something inside so Strong - Labi Siffre (No need for explanation)
2) The Impossible Dream - Camelot (listen to the lyrics - to fight the impossible fight)
3) Towerblock - Julia Fordham (1980s chanteuse - deep deep lyrics, worth looking up just to listen to this one song, if you've ever felt cursed by the strength that has helped you to survive)
4) I am What I am - Gloria Gaynor (?)
5) Somewhere - from West Side Story (any decent version will do - somewhere there's a place for us...)
6) Anthem for a Lost Cause - Manic Street Preachers
7) Shadows Fall - The Proclaimers (an album track which beautifully captures the pain of just getting through life)
8) High Flying Adored - From Evita (great version by Madonna and Antonio Banderas) lyrics about the public persona versus the private - never assume anything about other peoples' inner lives - we don't know unless they share that part of themselves with us.
9) Pavane for a Dead Princess - Maurice Ravel (I know the title isn't very appealing, but the expressive music allows so much letting go of sadness - I find I am able to sit with difficult emotions like grief and sadness when I either play this or listen to it....just let the music affect your emotions)
10)Town Without Pity - Eddi Reader (Or Gene Pitney if you fancy the original) Great when you feel people have been getting at you - a kind of musical finger to the small minds that have been picking on you for whatever reason - personally I love the brass arrangement on Eddi Reader's Version.

(Nearly Made it: Beautiful, Christina Aguilera, Beneath Your Beautiful, Labrinth, Over and Done with - Soundtrack Sunshine on Leith (The Proclaimers), I'll Find my Way Home, Jon & Vangelis, Never Had a Dream Come True, Stevie Wonder...)

When I am licking my emotional wounds I need this soundtrack, along with a healthy dose of solitude, crammed with positive things which reinforce the good things about my life - which I need to keep acknowledging are many and many-faceted. My dog accepts me unconditionally and loves me. I have learned through owning her, that I am capable of loving other creatures and have managed to begin to transfer that knowledge to humans! And when people have hurt me I no longer give up on people all together. I am now able to look at the friends who have stood by me, who understand that friendship is a two way street (that I am capable of giving back) and who assure me that I am indeed, lovable.

Borderline Personality Disorder - Diagnosis Hopeful or Hopeless?

Trigger Warning: this post mentions symptoms of suicidal feelings and self harm, if you are affected please give it a miss

Someone asked me the other day if I found my diagnosis a help or a problem? It's an interesting question to ask and answer, especially when I consider that (possibly with the exception of Sexually Transmitted Infections) no physical diagnosis carries with it the same level of judgement and/or stigma as most Mental Health conditions.

BPD is a label, which, I have discovered since my own diagnosis, carries with it a whole heap of historical issues and assumptions.

Firstly, it has suffered from going through a long period during which it was considered to be 'untreatable'. Among some professionals it seems that this situation has not moved forward, judging from ongoing issues that people with the condition still report in finding support and help from services during crisis periods. This is despite clear pathways being published by NICE and the Mental Health Act 2007 declaring that BPD should no longer be 'a diagnosis' of exclusion.

Secondly, it is problematic to pin down and explain how a diagnosis has been arrived at. This is simply because to fulfil a diagnosis of BPD a sufferer needs to show issues in five major areas, up to a maximum of nine symptom clusters - someone has estimated that this means there are a possible 256 individual symptoms which could indicate a diagnosis of BPD. This has meant that there is much scope for debate among Mental Health professionals.

Thirdly, many service users do not like the label BPD because they feel that Mental Health professionals view this patient group as exceptionally problematic to manage. I don't want someone to look at my file before they meet me and decide that I am going to cause them problems. I am a complex person, my mental health issues are complex and have long standing complex roots. My mood changes are volatile and can switch immensely in the period of time usually allocated for therapy sessions. It takes a special kind of understanding to sit with the kind of emotional distress I often express and help me to work through those emotions to a point where I can feel hopeful. I am grateful for professionals working with BPD as a specialism who have treated me with acceptance and understanding. Above all, although I may have the same label as someone else and that helps to decide upon a course of action to take to help me, my needs are my own and more than clinical processes, I need someone to listen to me, help me to sit with my emotional pain and, ultimately teach me the skills I need to manage my condition in the long term.

Most people who dislike the diagnosis of BPD dislike it because it essentially labels my 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 vague ‘stress related’ breakdowns associated with Clinical Depression. Having had my first encounter with mental health services in school, aged 16, 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).

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. My GP increased and changed my anti-depressants on three occasions. I was referred to the Graduate Mental Health worker at the practice. 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.

Thankfully, her intervention 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 has been my CPN since 2009 and this 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.

Ultimately, my diagnosis is so misrepresented and misunderstood that it gives me many opportunities to explain that Mental Health conditions have numerous causes and therefore numerous responses. BPD has allowed me to speak to lots of different people about the need to talk about Mental Health issues and to provide at least one person who they can talk to openly about how it is to live with a complex long term mental health condition. A label is helpful insofar as it helps me and those treating me to decide on a direction of travel towards recovery.

I think one of the most important discoveries of my life after diagnosis was the work of Marsha Linehan. The fact someone explained the reasons for my condition that made sense to me, and not only that, but showed real empathy and then offered a means of hope through DBT, helped me to feel that I could find a path to managing my BPD. One year after reading her initial book introducing DBT, a programme was introduced in my local NHS Trust.

Someone out there actually seemed to be able to make sense of the mass of thoughts and emotions which unspooled like unwound wool in my head. She explained how it felt to be me and she also showed that she kept her promises - trust in the therapeutic relationships is critical to the success of DBT. It has been the key to my being able to manage my BPD symptoms over the past two years:

‘People with BPD are like people with 3rd degree burns ...Lacking emotional skin, they feel agony at the slightest touch or movement.’ – Marsha Linehan

“I was in hell. And I made a vow: when I get out, I’m going to come back and get others out of here.” — Marsha Linehan

Why do you have to be so mean?

This week I have come across what can only described as 'hatred' for people with Borderline Personality Disorder. It shocked me. Don't get me wrong, years ago, before I was diagnosed with BPD, I used to work in the Criminal Justice System, and my specialism was Mentally Disordered Offenders, the majority of whom were diagnosed with some form of Personality Disorder.So, I was aware of negative attitudes to people with Mental Illnesses, and in particular, those with diagnoses of PD.

My colleagues used to groan if case notes included the dreaded BPD diagnosis. 1) because people with BPD are 'difficult' 2) because at the time, BPD was considered 'untreatable' by local NHS Trusts and refused to admit even suicidal cases 3) because there was a high likelihood of suicide/self harm from this 'group'. In short I believe BPD sufferers as a group have received and continue to receive a bad press from a number of sources.

I found that being consistent and listening closely to what was being said to me, often helped me to manage my cases, in other words: compassionately treating people, regardless of labels, as if they were human beings seemed to work. (not rocket science is it?)

Anyway, back to the guy who has obviously had a bad relationship with someone with BPD. His take was that BPD doesn't deserve to be treated as a mental illness, but is just down us being some kind of 'crazy ass' (his words). He even managed to intimate that the abusive backgrounds of a large number of people with BPD was actually the fault of the victims. Initially I felt defensive of myself and others who have suffered from what some describe as 'emotional sensitivity' rather than BPD. Then I considered that perhaps, following a messy break up (I've been involved in my fair share of those!) his anger was robbing him of his humanity. Which is understandable.

How do I respond to his point that I'm just an emotional mess? That I do not deserve treatment? Well, I think that I would point him to Marsha Linehan's (the creator of Dialectical Behaviour Therapy for BPD) explanation of BPD as equivalent to suffering 3rd degree burns.

Imagine suffering emotional and psychological pain that is so deep and so painful that the only solution you can think of is either to inflict physical pain to distract from it, or to believe that dying is the only way to stop it? Does that sound like something that you could sustain while maintaining a functional life? Yet many sufferers of BPD do manage to do just that, while holding down very respectable jobs and being creative and dynamic in certain spheres. This 'apparent competence' in certain spheres, my BPD-hating 'friend' points out as proof that BPD is made up by selfish women seeking to justify messy love lives and as an excuse to be nasty to men.

I think at this point we can recognise the ignorance and stigma evidenced here towards Mental illness in general. I mean you can't possibly run a country with a severely debilitating clinical depression, can you? Winston Churchill, anyone? Just because my professionalism and training allow me to carry out a job from 9-5 does not mean that the emotional distress I am experiencing is not real and does not have an impact on my mental and physical health.

If I may, I need to return to the burns analogy, even when time allows a skin to grow over the burned area, there remains a sensitivity that often never leaves. The levels of abuse I suffered as a child have left me with emotional and psychological scars. My diagnosis whilst not perfect, has allowed me to access help to develop skills which mean that I no longer consider death to be a solution. My treatment means that I am able to begin to 'function' again, after a complete breakdown two years ago.

I am responsible for the people I may have hurt throughout my life. I would say, though, if you rip the dressing off a burns victim, you can expect a strong reaction! My plea is: try to listen, try to understand, try to give space, and, if you think you are too angry or too hurt to see the human behind the label, make it a clean break.

http://bpdlifeinthemoment.blogspot.co.uk/

What doesn't kill you makes you stronger - Really?

It's one of those throw away comments that those wanting to instil 'backbone' in their audience utter from time to time - 'Remember, Chaps, What doesn't kill you, makes you stronger... onwards and upwards.... play up, play up and play the game...' You get the general idea.

However, there is a ring of truth to it, which means that I am not able to just dismiss the philosophy behind it, perhaps it depends on who is the mouthpiece at any given time. If it is the glib response from someone wanting to stop you talking about your pain, then it becomes an empty cliche. However if it is the considered comment of someone who has truly survived the worst in life, then maybe it's worth another look.

One thing I have learned about living with BPD is that those who suffer the depths and heights of emotional sensitivity are exceptionally strong characters - and how! Try sitting in on a DBT group skills session and even the apparently quietest member of the group will have a core of steel. Why? Simply because most have survived what onlookers might consider the unsurvivable. My biggest problem before I started DBT was that most of the ways I had used to get through were not helpful and at times were positively self defeating. Sure, I did survive and heck I know I was stronger, ask anyone who encountered me in full temper at that time, but contentment? Happiness? Stability? They were alien to me.

Marsha Linehan (the creator of DBT) has described the level of emotional pain suffered by those with BPD as being equivalent to third degree burns. There is a resonance to that description as I know that the emotional distress I have felt at times has been like someone breaking open my chest and exposing my heart to the most searing, biting fire imaginable. The pain felt physical and so I tried to replace one physical pain with another, through self harming behaviour. The problem being, I had got to the age of 42 and, yes I had survived what hadn't killed me and, yes, in some ways I was much stronger, but I was emotionally numb, unable to sustain deep relationships, feeling isolated and trapped in a cycle of surviving pain through unhelpful behaviour, feeling guilty about it, then starting again the climb to the top of the emotional crescendo before repeating the pattern. It was, frankly exhausting, just living.

One of the most amazing things I heard when I started DBT was that my problem behaviours were 'understandable'. I had taken so much time hiding them, because I was so ashamed and felt, rightly, that very few people would be non-judgemental about my behaviour - primarily because on the surface I was 'successful', holding down a job, owning my own home, articulate and popular. I was also in my 40s - not how most people picture self harmers.

However, for me to make sense of this level of acceptance I had to first accept that I had suffered sustained trauma throughout my childhood, something that I had avoided doing for fear of being overwhelmed by that truth. Again, what doesn't kill you makes you stronger, right? Slowly, it began to dawn on me, that I had walked out of the prison cell of my past but I hadn't let myself believe that I had been released. Slowly, with help and support from the DBT skills group I began to realise that not only did I have the strength of the survivor, but I could actually use the tools given to me by DBT, to finally cut the chains hanging off my mind and stop my thoughts and feelings from dragging me back to that cell. One turning point in my recovery was in realising that rather than freeing me, my previous coping skills had kept me trapped in the prison of my past.

I am now committed to making the most of the present, as it is. Some days I feel sad and that's ok - nobody can be 100% happy all the time. Now the inner strength which helped me survive is helping me to rebuild my life from the ground up. I am learning that my feelings do come and go on their own, that no matter how searing the heat of the emotions, they have not killed me... yet. Although I will admit that there are still times when my anxiety is that if I let the full force of the emotions come unchecked, they will overwhelm me. But with the support of others who are on the same journey and my DBT therapist, I am able to find the right DBT skill to help me get to the other side of the emotional wave and acknowledge that, yep it didn't kill me and, guess what? It has made me stronger!