Finding the Words

'Shall I compare thee to a summer's day?' (W Shakespeare, Sonnet 18) or how on earth do I describe you? Finding the right words is an essential skill in trying to identify for ourselves and articulate to others, the deepest hidden feelings, experiences and thoughts. Too often when it is a problem, we find ourselves inside the 'belljar'. Locked away. One of my often repeated phrases when I was most in distress and struggling to get help, was 'I am inside my own head, screaming. No one can hear'.

That is why I found the Emotion Regulation module of DBT (Dialectical Behaviour Therapy) so helpful. I started to learn how to first identify the individual feelings from the morass of turbulent, violent waves of panic, anger, fear and self-hatred that used to tumble incessantly through my head. This step was the crucial first one towards learning how to manage the power and frequency of such self destructive and exhausting experiences. That's where having the time and safety to find and express what is going on inside is so important to begin to manage the fast cycling moods I so often experienced.

There has been a constant debate since I was first diagnosed - given the label 'Borderline Personality Disorder' (BPD) - in 2011 about what to call the clusters of symptoms and behaviour patterns which I exhibit. In one sense I don't care, my bigger battle is to find a sense of who I am among the shifting sands of invalidating parenting, my own confused sense of the world and the relationship difficulties this led to. However there are times when I am jealous of other sufferers who have a vernacular with an agreed understanding of their diagnoses: Chronic Fatigue Syndrome, Generalised Anxiety Disorder, Depression. There are always disagreements caused by stereotypes/stigma. Getting passed the minimising attitudes which get in the way of educating people about the real impact of Mental Illness is an ongoing struggle to get beyond the surface meaning of the diagnosis.

For those of us who have the complex roots both biologically and socially of emotional dysregulation, our diagnosis rarely, if at all offers any real language of understanding our experiences. We have gone through a number of versions: Emotionally Sensitive PD, Emotionally Unstable PD. Today I read of the World Health Organisation latest attempt to give us a workable diagnosis: Mild, Moderate, Severe Personality Disorder, with sub classes related to things such as experience of complex trauma, obsessive compulsivity, detachment, dissociation and disinhibition. This to me is a more positive move forward in giving a shared language between sufferer and professional to help explain the main areas where I have problems in life.

However, as with all diagnoses there is the problem of individualised responses to words and language: where I impose on them judgements and assumptions based on my personal experience and history. So, for some people being told that their condition is 'mild' may create some problems which makes them feel 'less than'. Whether we like it or not, there is a reality born of experience which tells me that words, like 'severe', 'acute', 'urgent' bring with them the resources I may feel I am in desperate need of.

I don't care in my moment of crisis where I sit in terms of others who may be more 'severe' than me. My fear becomes, if you give me the label 'mild' or 'moderate' then it follows that will not be given the help I feel I need until I prove to you I am 'severe'. In many ways this has always been an issue with perceived PD 'problem behaviour'. In reality if every team working with people like me is adequately and appropriately trained and resourced to provide the right level of intervention for me, then I can be reassured and given the right level of intervention for my needs - in theory.

It is good to work towards clarity of diagnosis, but, for me, the priority must be the reassurance that if I am given this diagnosis then it follows that I will then receive the appropriate level of help I need to learn to manage my condition.

"Personality disorders will no longer be classified categorically, but rather using dimensions of severity—mild, moderate, or severe.1 An additional category of personality difficulty will be demarcated not as a disorder, but as the equivalent of a z-code in ICD-10—ie, a non-disease factor that affects health status and encounters with health services. Following assessment of severity, clinicians will then have the option of specifying one or more of five domain trait qualifiers: negative affectivity, anankastia, detachment, dissociality, and disinhibition. ICD-11 will include new guidance for personality disorders to be diagnosed during childhood, albeit with caution, as they had previously been “inappropriately set at late adolescence or early life adult life”.1 Additionally, the revision will include a borderline pattern qualifier that is not dissimilar to the symptom profiles outlined in ICD-10 and the Diagnostic and Statistical Manual of Mental Disorder, 5th edition." (From the Lancet - Problems with the ICD-11 classification of Personality Disorders - Jay Watts - June 2019)

The Art of Connecting

I am preparing a talk to a group of Psychological Professionals talking about my story in the context of my journey through Mental Health Services. In considering the factors which have helped me most in my journey I have been reflecting on the central relationships along the way and the need to break out of the isolation of mental ill health and connecting with the world around me.

When the core building blocks of human relationships have been shattered by early experience of trauma where do we begin to rebuild trust, particularly within the restrictions of the realities of accessing Mental Health interventions? That is a message I want to communicate. Where to begin? People familiar with this Blog know that I have used the acronym CLANG for the five ways of well-being (Connect, Learn, Active, Notice, Give). That way I can truly call myself a 'Clanger'! I like this order as it begins with the C - Connect.

Connecting in relationship is at the core of our identities as humans. The truth about Trauma and its impact, is that while we survive it alone, there are few who can overcome it, effectively, alone. Healing requires relationship and, more importantly, relearning healthy relationship. ‘Most of us cannot carry these moments alone; and yet there are so few among us who will make peace with our despair.’ (Sarah Bessey – Out of Sorts) We cannot admit to our need of others if we do not admit to ourselves the extent of the burden we are carrying. When we remove judgement of ourselves for struggling with the effects of trauma and accept that the pain of despair is 'understandable' and 'human', we stop isolating ourselves from the rest of humanity and give ourselves permission to reconnect.

There is a complexity inherent in the destruction of relationship and connection caused by my early experiences of trauma. It follows then, that there needs to be complexity in the therapeutic approaches through which I make my way to healing. I wonder why group therapy is so often the central medium for some therapeutic approaches. I know within the NHS the answer is 'resources'. However, the argument can be made that those of us with experience of complex traumatic experiences 'cost' the NHS when time and resources are not appropriately allocated to helping us with this central issue of connection.

Healing takes time and commitment in relationship. Brene Brown says that we should only share with people who have earned the right to hear our story (The Gifts of Imperfection: Let go of Who You Think You're Supposed to be and Embrace Who You Are (2010)). Within the therapeutic relationship of many interventions, where is the time to earn that right?

The truth is that all of us relate to one another on a one to one basis. Groups are problematic to me, there are so many barriers to my engagement based on my experiences of relationships in the past. Social Media is a particularly difficult arena for connecting.
I believe this is because it is about quantity, rather than quality. How many mental health problems are related to or exacerbated by this medium for connection? The reality is that I have capacity for a few in-depth relationships and after that there are circles of intimacy emanating outwards from me at the centre of my social networks. Right on the outside are those I relate to only in groups, clubs, teams, churches, workplaces. There can be overlap between concentric circles of connection, naturally. On the whole I build trust in you when we spend time sharing moments that matter to both.

I have asked myself what it is about the DBT structure which helped most. The answer I think is that it offers a layered, complex approach which allows me to engage from my own experience with each element of the therapy. DBT groups work by introducing skills which then are taken up by me and applied to me to fit the life I want to live.

Our deepest relationships are those which are built, slowly over time. There are shared moments of trust. I need to learn the discipline of staying put, building or rebuilding friendships over time. In the past the fear of rejection, or even my anticipation of it, meant I would up sticks and run as fast and as far as I could the moment I felt myself beginning to rely on and (whisper it) trust in any relationship.

In the past I've written about rebuilding trust through animals. When every human relationship is laden with risk and reminds me of the pain of rejection and trauma from childhood, where do you begin rebuilding trust. I think that along with self-care for those of us suffering from PD diagnoses, connection provides the biggest challenge to recovery. Animals are wholly dependent, but they are entirely and completely non-judgemental and offer unconditional love. At a very basic level I can begin to connect with a living being who trusts me. At some point every year, within our group we discuss the fears about 'letting down' a pet. So we take it a step back and start by growing and caring for seeds. This may seem simplistic and reductionist, but if we truly do not believe 'we're worth it' we can begin to illustrate to ourselves the daily care of watering, feeding and spending time looking after a living thing. It becomes a reminder to do the same most fundamental things for ourselves in order to simply exist.

We are made for relationship and when we have our basic needs met through nourishment, sleep and hydration, we can start towards building a purpose for living. Here connection moves from a horizontal focus on those around us, to the bigger 360 degree, looking up and beyond our earthbound lives to finding a connection to something that is bigger than us and bigger than our struggles in life. For some of us, this is found in a faith in God, for others, in serving the needs of others, be it our families, or communities or even the wider world.

Connecting, ultimately says to the isolated 'you belong'.