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'.

Letting Go....

At the risk of triggering an earworm from 2013 I've been focusing on 'letting it go' this week. I am currently taking my turn at caring for an elderly very ill parent. 2019 has been quite a year with my Mum dying in April and my father a couple of months later for radical surgery to remove large tumours by removing all his large intestine. Unfortunately, as is the case with elderly people he has not followed the 'plan' ie discharged after 7 days followed by steady rehab and recovery at home. In the past three weeks as a smaller family unit of three we have been watching our father fight numerous infections and have to undergo another significant operation to save his life. The words that are repeated to us are 'there is a lot going on in there' and 'we cannot say he is improving, nor can we say he is deteriorating'. So we wait, in no man's land.

My previous post was reflecting on grief after losing a parent, when there is a conclusion. There is a different range of challenging emotions when in the waiting space of someone who is critically ill. In the past because of my fears about toxic emotions and the overwhelming power of them to paralyse me, I have frozen my sadness, stopped myself crying, for fear that the floods would overwhelm me. It continues to be my default position, so it was that I found myself starting to cry over the dishes one day and, even though I was alone, found myself trying to deviate from the feelings and thoughts.

What's so wrong with tears? When I am in my rational/wise mind I know the answer is nothing. These tears are necessary, these tears are natural within them is so much more than grief and loss. Within them are more complex feelings, like frustration, impatience, the sense of powerlessness in the face of life's realities. I was struck by the need to allow myself the release of tears when a nurse came into the room and asked 'How are you?', I responded 'I'm ok', then checked myself, 'Or were asking about my Dad?', 'No, how are you doing today?' I was so focused on the ups and downs of my Dad's journey, I realised I wasn't able to answer, the answer is 'I don't know.' One thing I do know is that even if I couldn't explain to you the reasons for my tears, I am learning to let them go - as an important part of my own self-care at the moment.

'Feelings....Nothing More than Feelings...'

A central workshop in our All of Us group, is one where we encourage one another to 'make friends with our feelings'. For many seeking help from mental health services, the power of feelings can at times feel overwhelming and entirely outside of the individual's ability to cope with their effects. Often over the years I have thought despairingly of my overwhelmingly powerful negative feelings as anything but 'friends'. However, the reality of trying to live a life with purpose and connection with others means that I need to acknowledge the value and importance of feelings.

My Mum died earlier this year. My Dad is currently working through the news of bowel cancer along with the need to undergo a lot of significant surgery, in his 80's. I have been aware in the past of experiencing overwhelming feelings of grief and loss, which all but rendered me incapable of functioning. However, I am aware at the moment of not responding emotionally to the loss of significant people in my life. I know that at sometime I will feel the grief and loss, it is a necessary rite of passage. Having been given a diagnosis my emotional responses to this significant life stage, when I and my siblings move into being the 'older generation', throws up an additional question...do I need to refer myself for clinical support?

My own grief journey has coincided with some thoughts I have been having around the issue of medicalising emotional responses to difficult life experiences. I wonder if this need to address the pain of some life experiences is another aspect of our risk averse attitude to life in general.

Following my Mum's funeral, which happened during half term, I returned to my job at an after school club for primary age children. The questions about 'how was your holiday?' are a natural way to speak to one another following a break. My response to the children's question: 'Did you have a good holiday?' was instinctively, 'No, because it was sad for me.' Naturally, the question will follow: 'Why?' I find that I have been direct and honest in speaking about my loss, I seem to have an aversion to the euphemisms, 'Passed on', 'passed away' etc. My response is 'My Mum died.' I like that the children didn't hesitate to either tell me about their experience of grandparents, or for some, parents who have died. The other response which was common was curiosity, 'was she poorly?' That allowed me to talk about my Mum's long illness (18 years) and the fact that she wasn't in pain anymore. Speaking like this to the children was initially completely natural, we all returned to focusing on enjoying games and playing. However, later, at home doubts crept in, should I have protected the children more? Well, on reflection, no, they saw that I was sad, it was ok, I was ok, there was a reason for my sadness, which some had experienced in their own families and in those moments there was a connection in our shared humanity.

As someone with ESPD (Emotionally Sensitive Personality Disorder, formerly Borderline PD) my emotions have been swirling masses of indistinct, out of kilter, responses to the most insignificant stimuli. Naming emotions, was initially my biggest challenge, simply because I was seething within a fog of powerful, negative emotions. Happiness was problematic simply because I didn't enjoy it because I always expected it to come crashing in on my head. Such had been my often self fulfilling prophecy. The feelings themselves were not the enemy, nor were events that are a part of life. Like weeds in a garden, feelings need to be managed with help, when they are out of place or proportion to the stimulus.

Sometimes life hurts. Sometimes I will experience happiness. There is an expectation I think which is prevalent in our society, which demands that life should be smooth sailing, otherwise there is something deficient in my environment or, in me. Having lived for so long with rapidly cycling extremes of emotion, from absolute despair to almost unbelievable highs, the balance I worked hard to find through DBT felt 'boring'. The epiphany for me was that real life is mostly routine, that when I am well, I can experience life by enjoying moments along with being able to feel sad, or flat without it being the extremes of depression.

I am only part way along my path through grief for my parents. There are complexities because ours was not the ideal upbringing and there will be other emotions mixed in with feelings of loss. When we love others and they hurt themselves, we instinctively reach for the painkillers and seek to stop any bleeding, or put bones back together. If we could we would stop our children from feeling lonely, uncertain, sad because that means that something in life has hurt them. But I cannot take away the pain of a child's grazed knee, anymore than a psychologist or psychiatrist can remove the emotional pain of past trauma through medication alone.

Unlike the times when my emotional responses in the here and now connected in a torrent to the pain of unhealed trauma from childhood, my grief is natural, a response to life as it is. I will move through it in my own time and using my own ways of coping. I do not want to numb the pain of the grief, because, whatever the complexities of our relationship, there was love in our family and, a truism, I know, love hurts. I know I am well because I am able to accept that emotional pain in the right context is okay and 'this too will pass...' because life is about seasons.

One final note about seeking to take away emotional pain too soon through medications; I think that an unintended consequence of having an NHS which provides healthcare free at the point of need, is that we too readily turn to clinicians to remove our pain as humans. For mental ill health, this sometimes puts unrealistic pressure on the clinicians to protect me from the pain of life as it is, or it means that I become too dependent on medications which dull the pain.

Without being flippant, one lesson I have learned from waxing is that intense, quick pain may sting, but in the long term helps me to remove the hairs that betray my age and so escape endless internal monologues about whether people have noticed!

For years, I was so fearful of feeling the pain associated with some life traumas from my childhood. I imagined a huge torrent of feelings that would, literally kill me. However, when I was guided through facing up to the realities of what happened to me, (avoidance is a big way of evading pain) although it hurt, ultimately I learned that my feelings wouldn't kill me, even if at times it felt as if they might!

Noticing

One of the most popular activities in our weekly group is our 'noticing'. We spend up to 30 minutes outside (particularly positive when Spring is in the air) and focus on each of our senses in turn as follows:

1. Notice 5 things you can see.
2. Notice 4 things you can hear.
3. Notice 3 things you can smell.
4. Notice 2 things you can touch.
5. Notice 1 thing you can taste.

It's a simple exercise and it builds on our regular practise of mindfulness. So the aim is not to focus on the number of the things we notice but on the experience of focusing on the world around us, rather than being stuck inside our own heads. Above all we are not judgemental of ourselves and we try hard not to be competitive. Some days it is easier than others to be mindful of what's around us. What is most important is that we try so that we learn to 'give our heads peace' - if only for a moment.

I. Am. Not. My. Diagnosis....(Some (Personal) Do's and Don'ts of Lived Experience Involvement)

Since I received a diagnosis which gave me access to Mental Health Services, I have spent a number of years being asked to 'be involved' with different projects within my local NHS. Some of them felt effective and useful, but many despite initially being a positive way to improve services for others with similar experiences have fizzled out - or come to an abrupt end, with little or no feedback to me regarding the reasons for the project ending.

Over the years I have come to the conclusion that the main reason for mine and others' with Lived Experience ending up being discounted, lies in a strange dissonance between Professionals' belief in encouraging self management and self advocacy for 'service users' and an aversion to risk. Usually this is articulated as concern for the fragility of 'Peer Workers', statements around avoiding 're-traumatising' me when I am asked to use my experience to inform my perspectives on Mental Health Services.

Above all, I think the main hurdles to true involvement for those of us with 'Lived Experience' lies in assumptions around individual diagnoses. Unlike medics who deal with physical well being, there are few direct treatments which act as 'magic bullets' to 'cure' mental ill health. There are few commonalities in causes even of the most commonly diagnosed mental health conditions. Nor is there often consensus among professionals about the most effective interventions for everyone with the same 'Label'. Mental Health is so challenging because we need to address issues of the whole life. Assessment may take months, or even years to provide clear understanding of my complexities, let alone begin to help me manage my condition so that I can achieve a 'life worth living'. To understand the risks of my condition, means that you need to understand me as a whole person. To learn to respect my recovery journey means understanding what works for me in managing myself so that I can function effectively. If I am in Recovery and I believe I have something to offer to your project, please trust me to know myself, my risks and what works to restore stability. If I take on the role of colleague, then I do not ask of colleagues therapeutic support, anymore than if I were working in any other context.

As with most aspects of Mental Health, much can be solved by addressing assumptions and expectations - on both sides. My experiences have led to me developing some Do's and Don'ts for helping make my involvement effective for both.

Don’t overpromise – if I have had a good experience of services any inability to deliver on what you have promised will erode any trust. If I have had a poor experience it will reinforce my lack of trust in the NHS as a whole.

Don’t get me to commit to projects without everyone involved being in agreement. I cannot tolerate conflict when seeking to rebuild work confidence. Nor can I on my own change an organisation's culture.

Don’t ask me to go through recruitment procedures, unless there is a definite green light.

Don’t tell me you will be in contact, then fail to make any contact. If there is a vacuum in communication I will fill it with my self-critical beliefs that I really am useless and unwanted.



Do keep me informed of delays/concerns about NHS policies and procedures.

Do be honest with me about the challenges of changing staff culture and assumptions about working with people with Lived Experience.

Do give me the opportunity to talk directly to staff on teams/departments who are considering peer roles. Hearing real stories and meeting real people challenges stigma.

Do trust me to manage my own condition – I am not relying on colleagues to be part of my recovery plan and that needs to be made explicit.

Do make role descriptions and remuneration clear before engaging me in any work voluntary or otherwise.

Do be upfront and honest with me if you have any concerns about my wellbeing and then expect me to be responsible for putting my Recovery Plan into action.

Do be honest if there are organisational/policy changes which will affect my continued involvement – try to give me as much notice as possible so I can adjust. As much as I try any ending that is unforeseen will feel like an immense rejection and may impact negatively on my feelings of self esteem.

The Power of 'Yes'

Of all the skills and habits learned during Dialectical Behaviour Therapy (DBT) there is a small but significant concept known as 'willingness'. When I first came across it in a group skills session, I immediately linked it to my willingness to engage in the DBT process. However, after some years of recovery and reflection I can see that it goes so much deeper.

As an English student I challenged myself to read James Joyce's Ulysses....bit of a pretentious phase, but the sense of achievement paid off the effort. One of the episodes that make up this epic novel is called 'Molly Bloom's Soliloquy'. It is 50 pages of unpunctuated, stream of consciousness as Molly lies in bed thinking about life. 'So what?' I hear you say. 'What do you want? A medal?' The point of mentioning this 50 page 'sentence' is that, for me, the most significant part of this piece of writing is that the 50 pages begin and end with one word 'Yes'. James Joyce believed that 'yes' is the most positive word in the English language. And that brings me to the heart of what willingness has come to mean to me.

It means saying yes to leaving the past behind. Saying yes to trying new ways of coping when my old self destructive ways have proved ineffective. It means saying yes to being part of something....accepting invitations to begin new friendships. It means saying, yes to giving human beings a chance when humans have proved to have caused me most suffering in the past. It means saying yes to the reality that I am made to be in relationships with people. It means saying yes to accepting that people can see good things in me and may want to get to know me. It means saying yes to something or someone who is bigger than me and my problems. It means saying yes to belonging and feeling that I belong after years of feeling like an alien. When I was able to leave behind the constant feeling that I wanted to escape this life and instead said 'yes' to keeping going, no matter how difficult I may find it, the power of 'yes' began.

Yes releases me to say No to those things in my life that are self destructive. Yes enables me to say No to people who prevent me from taking part in life as it can be. Yes releases me to say No when I feel pressure to do things I don't want to do, because I fear rejection.

The power of yes is not contained in any magic formula. The word 'willingness' gives the key. Saying 'yes' to changing life so that I can stop being managed by traumas from the past, or the fluctuations of moods and circumstances, means actively willing myself to choose the positive. Saying yes to life may cost at times, but it must always be weighed against the cost of choosing not to embrace 'yes'.