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)

Groundhogs and Finding the Words

Groundhog Day is a bizarre American public holiday based around the behaviour of a brown, furry rodent, upon which the nation apparently bases its expectation for how much longer winter will last. Until the release of the film 'Groundhog Day', so far, so obscure. Now, we use the phrase to mean recurring events or conversations. Over the past two weeks, I've had that sense of 'Groundhog Day' as I have had conversation after conversation on the same lines. 'My husband/partner/brother/sister/friend/carer keep asking me how they can help me, they keep asking, how they can 'fix' me.'

It's a familiar conundrum, we wish we felt loved, but need to know that with love comes a desire to do 'something' to take the pain and hurt from us. For us, the issue is to prevent pushing the love away with the offer rescue. So often, the conversations continue, 'I wish (he/she) knew that all I want is a hug and reassurance.' So often, it seems that even to find a way to say something this simple is so hard.

I'm no expert, but I have gleaned some wisdom from those who have managed to voice their thoughts to their loved ones and found a way forward together.

1. If You Can't Say it, Try Writing It. Write a letter to your loved one and pin it to the family memo board, or to the fridge, or on the loo door; somewhere they can't miss it.

2. Relieve Them of The Duty to Be Your Saviour. I've stated before that it is an impossibility for one person to provide all of our emotional needs. Those closest to us need to know that we don't expect them to rescue us. Just as I have to accept that I can't rid myself of all pain, so I need to absolve those closest to me from the pressure of believing they have to take the pain away from me. Together we need to work together - I have lived my life, survived my trauma. I do not need to share the fallout from those past experiences as a burden on my current relationships. What I would welcome is someone to walk alongside me, to build me up with present positives, particularly when carrying the burden of my condition or my past wears me down. In the healthiest ways possible I need my current relationships to be nurturing and equal.

3. Be honest. Express to them what other things, practical things would really help when you are feeling overwhelmed. For example, it's okay for children to spend one to one time with a parent if that allows time for the other parent to restore batteries. Support one another in becoming involved in social and other positive activities outside the home. Empty vessels have nothing to offer others.

Expectations (Not Resolutions)

We all have them. We've all suffered from our own and others'. Many times they are too high for anyone to fulfil. Sometimes we most misjudge our own of ourselves. Expectations and their failure or perceived failure have caused me untold tears of disappointment and frustration. I am certain I am not alone - that expectation is bound to be met!

Misplaced and excessive expectations can cause increased distress and emotional pain at any time, but never more so than in our yearly build up to Christmas and New Year celebrations.

For the past few years I have abandoned the frankly masochistic practice of setting resolutions - why do we have to become abstemious and self denying, immediately assuming we can rid ourselves of all the behaviours which cause us untold misery over years at the stroke of midnight on the 31st of December each year? Was it Einstein who said that the definition of insanity is to keep doing the same thing, expecting a different result?

So, now I tend to adjust expectations - a bit like the Team GB Cycling Team - I now aim for 'marginal gains' making small adjustments to how I've been doing things over the past year. Looking back at my path on recovery I recognise that I have changed so many of my habits and behaviours and honestly I can say that I am in a better place this year than last. Doesn't mean that everything is hunky dory or that the past year hasn't had its battles or disappointments.

What expectations do I have for 2018?

1. For Myself. Setting unrealistic goals for myself has put unnecessary pressure on me over the years. Aspiration is all very well, but honestly, I believe that expecting myself to be perfect, to hold myself to a higher standard than I have for others has meant that a significant level of anxiety has been a constant in my life. So I need to adjust my expectations.

I am living with a condition (Emotionally Unstable Personality Disorder) which means that my emotional stability is constantly adjusting to changes in my circumstances, my body, my nutrition, the presence of other people, the absence of other people, making plans, too much work, too little work etc. This means that I quickly become exhausted if I do not 'give myself a break'. I have had to adjust my expectation that I can keep on going without any regard for my own emotional and physical needs. In the past this has led me to experience repeating cycles of recovery, giving out too much, for too long and ending up exhausted and unable to function.

I now recognise that helping others requires me to look after myself as much as I care for others. Part of the healing process is accepting that I need to be cared for in order to care for others. I cannot expect to feel connected to others by either keeping myself locked away so I do not become exhausted or becoming unreliable as a friend because I wear myself out by giving out when I have run out of emotional resources. The goals I set for myself will be helpful if I keep an eye on my limits, my realistic strengths and my need to care for myself as well as others.

2. For Others When feeling intense emotional distress it is easy to expect way too much of others. In particular, I have demanded of professionals and my friends the impossible. No human being can remove my past from me, no human being can undo the harm done to me. I think sometimes within a service which is free at the point of delivery, we have expectations of staff which are not humanly possible.

If I have waited nearly a year for a treatment, there is a sense in which I expect that on day one the therapist will wave a magic wand and all the emotional turmoil and sense of emptiness will disappear. In black and white that is clearly unfair, and if you presented me with this as an objective observation I would be shocked and deny it as an expectation. However, the reality is that sometimes my anger and frustration has been directed at those who are seeking to help me, simply because deep down my expectation is that they SHOULD be able to stop me from feeling so much pain. I have often created barriers and 'tests' which have become self fulfilling prophesies as I maintained my expectation and belief that 'No one can cope with me' and 'I am incapable of being loved and giving love'. Of course people give up when they are pushed to their limits and beyond. Unrealistic expectations result in the very rejection I always fear and, ironically, expect.

Adjusting my expectations means that the limits of the therapeutic relationship and friendship which maintain effective connection can provide a stable framework in which they can survive my emotional storms. Friends and therapists alike have their limits. I have no right to expect a friend to carry the burden of my past hurts or my present struggles. A friend is someone who walks alongside - no one - not even in the most intimate of relationships can actually live my pain for me. The therapist is there as a sounding board, not a whipping boy, as a guide, or coach. They are not a fount of all knowledge, nor are they able to 'prescribe' chemicals which can remove every painful emotion or memory. In a sense, because I have survived the actual events, the emotional pain and distress I continue to feel are the 'aftershocks'. I have the strength to deal with them, I do not have to inflict the same distress on my friends or my therapist in order for them to come alongside and help me cope in the here and now.

The most pervasive expectation I have had has been that of the 'perfect relationship'. If my loved one really understood and loved me, they would know at every moment exactly what is happening emotionally to me. They would be so entwined with me that they would be able to read my mind. Most destructive of all is the expectation that if my partner loves me 'enough' then all the pain and emptiness inside from my early experiences, coupled with my physiological make up would end. Man, what a burden to put on any relationship let alone any individual. Often, this impossible expectation is coupled with the twin one of myself, ie that no matter how self destructive to me, I will do anything to 'prove' my love. Sometimes, this toxic combination has resulted in abusive relationships which have perpetuated the destructive experiences of trauma in the past. Adjusting my expectations to taking responsibility for my own emotional balance allows me to enjoy connection and relationships which are not burdened by unrealistic expectations. Accepting that our shared humanity means we all have our limits allows greater honesty and more secure relationships.

3. For Life Life is tough. For everyone. When we are at our lowest we often assume, wrongly, that everyone else and everything else is experiencing a life that is so much more than our own. The reality is that most of life is boring when people are not dealing with crisis or enjoying high points. Often I have assumed that no one else is struggling to extent that I am. It is a symptom of emotional struggles that we fail to perceive the daily grind of most people. No one exists on mountaintops in terms of their life experience. Mountains stand out because the terrain around them is lower. The lives and experiences of others we think are better, stand out because of the relative 'normalness' of those around them. I do not know what other people's experience is of life, nor can I tell anyone else what a meaningful existence consists of. I can only decide that for myself. I cannot possibly compare myself or my feelings about life to another. There are too many variables in our comparative experiences. Nor do I have a right to judge another person for struggling, particularly if I expect that their life experience has been 'easier' than mine. I have no right to call another person's mountain a molehill. Accepting myself and the life I am living as unique to me, without comparing it that of others means that my expectations of my own life shift and don't suffer in comparison. This means that material and physical circumstances become less vital to my expectations of life.

If you are finding yourself under pressure at this time of year, ask yourself what you expect, or expected from the festive period? What do you expect of yourself and others going into a new year? Are your expectations for recovery/managing your mental health realistic? Do you expect too much from yourself and others? Do you ignore the limits of living in the real world? Are your expectations of medications/professionals/human relationships for your mental health realistic? Accept what cannot be changed, change what you can, within your own limits and maybe learn to enjoy what there is to be enjoyed, moment by moment. Resolutions sound so definite, expectations can be adjusted.