Oceans of Emotions

I've always loved water. Being in it, on it and under it. I've enjoyed swimming in all kinds of swimming pools, beautiful Victorian bath houses with cold little cubicles, my modesty sheltered by Circus tent-striped curtains, modern circular 'fun' pools, aimed at frustrating the serious swimmer, rivers, lakes, and most exhilarating of all, the sea. Again and again I have returned to water imagery to try to explain the complexities of my own mental health struggles.

As I have widened my experience of explaining, discussing and challenging assumptions about mental health in general and my own diagnosis in particular, I have realised that, because I cannot show you operation scars, or other visible symptoms, it becomes difficult to help you understand my experiences.

When your primary symptoms are centred around emotional volatility and their impact on your behaviour, most people think that you are describing being 'moody'. That or words and phrases like: over-dramatic, highly strung, over-sensitive melodramatic, emotionally manipulative, serve to dismiss my experience and need for additional support. This has come sharply into focus throughout my recent experience of going through the Work Capability and Personal Independence Payment assessments. So, once again, I will try to explain how come time and resources have been spent on treating my 'moodiness' since my diagnosis in 2011.

Mablethorpe V Maui

I grew up with visits to the seaside on the North Antrim coast, which means that I became used to waves crashing in from the Atlantic. As a strong swimmer I enjoy riding on the top of waves as they hurl me towards the shore. Once when visiting Ghana, I experienced huge Atlantic waves with swirling undertows which were far too strong even for me to cope with. I certainly learned the limits of my ability in the huge Rollers off Sir Charles Beach on the Gold Coast.

Imagine then, my first visit to the North Lincolnshire coast, when after nearly a year in South Yorkshire a group of us went for a day out at the beach. As the flat beach gave way to water, I was deflated, as the 'waves' (or rather ripples) lapped at my ankles providing none of the excitement or exhilaration I normally associated with sea swimming.

My point is? Imagine that you live your life with emotions which never reach the ripples of Mablethorpe. Imagine that every day you awake with an emotional arousal akin to the waves crashing in off the Atlantic onto the Antrim coast. You never manage to start or return to 'neutral'. Then imagine that the everyday events and trials begin. Someone cuts me up in traffic - I am not able to be annoyed, because my emotional temperature is already raised, one small event can provoke an outpouring of rage.

So what? A lot of people experience road rage. Problem being that the waves of emotion are at Gold Coast levels and continue that way for a sustained period of time. Now imagine that before I can return to smaller waves of emotion, I receive an important phone call at work, which puts additional pressure on my deadlines for the day. The emotion switches, but returns to huge crashing wave levels, this time of anxiety. As a result of this heightened emotion I find I have physical symptoms, nausea, triggering migraine symptoms. Sometimes I may throw up. Sometimes I may find I succumb to a debilitating migraine attack lasting 48 to 72 hours. I am only half way through a normal day.

In the past sometimes the only way I had of reducing the high levels of emotion was to self harm - thus somehow releasing the building pressure. Imagine cycling through a full range of emotions from anger, anxiety, to relief and feeling excessively giddy several times in one day, like this. Is it any wonder contact with other people and life in general is exhausting?

Oceans V Brooks

One of the observations commonly made by others about the behaviour of people with Emotionally Sensitive Personality Disorder (formerly Borderline PD) is that my reaction is out of proportion to the triggering event. There are a number of reasons for this, some biological, some due to my experiences in life. Research has shown that the emotion centre of the brain (Amygdala) is more highly attuned and sensitive than average. For those who have experienced childhood trauma this emotional disfunction means that memories, particularly the emotions evoked are overly vivid and are experienced with the immediacy of immediate experiences - as if I am reliving the original trauma related to the given emotion.

Sometimes the encouragement to 'just let go of the past' adds to the pain, as I feel judged for feeling the fear, rejection, sense of shame with the same power as if it had happened in the immediate present. When I fear that I am going to lose a friendship, I am not only filled with the fear in this moment, it connects with every time I have experienced rejection throughout my life. So, I am not only dealing with one wave of emotion at a time, I am trying to manage oceans of the same emotion, an accumulation of every time I have felt, particularly, painful emotions. Again, is it any wonder that my emotional reactions are out of proportion to the triggering event in the here and now?

Self Defeating V Effective

There are effective ways of managing life but there are also self defeating behaviours which over the years I have developed to help me get through the crashing emotional waves, but which do nothing to take the power from them. Symptoms related to the emotional turmoil of ESPD (BPD) include, self harming behaviour, substance misuse, overspending, excessive speeding, or reckless driving, problems with eating, an unstable sense of self, major problems in relationships. When I am struggling to maintain day to day life in the face of my turbulent internal struggles, it becomes impossible to think of more effective ways of coping. However, those self defeating behaviours, which, however, flawed, have kept me going over the years, need time, patience and space to be replaced by more effective coping skills.

Having painted part of the picture I hope this explains why Dialectical Behaviour Therapy (DBT) is such an intensive course of therapy. Once I was discharged, it was only the beginning of managing my emotions daily using the skills taught to me during the DBT programme. When talking of mental health conditions, I think people become confused particularly once direct care ends. If I am discharged from hospital following an operation, then the problem has been dealt with and my condition, hopefully improves. For some mental health and physical diagnoses there is no end point. Just as the diabetic needs to undertake both medication and lifestyle changes to manage their condition effectively, so I need some medication, alongside the DBT skills to be able to keep the waves of emotions manageable. 'Manageable' is not 'dealt with'.

Taking the 'PIP' (part 2 - My New Life on the Rubbish Heap)

In the past two months I have had my income slashed by 2/3. Let that sink in. I have been assessed by the DWP as being unable to return to paid work due to the impact of my condition. But the same department have decided that I am not sufficiently incapable that I require any additional help with my living costs. So, I am adjusting to having £80 a month to live off after I have paid my housing and essential costs. I do not drink alcohol, I don't smoke. I have disposed of the vehicle which was helping me to volunteer and visit important friends once or twice a week. I am no longer able to afford the cost of swimming which was part of a plan agreed with my support worker to help me keep well. The council funding which would have supported projects open to people on limited incomes has been slashed. Opportunities to develop social skills and help me overcome my depression and anxiety symptoms have now closed down.

I am tired of fighting this system. I am sick of hearing myself pretend that I am doing okay with it. I am sick of not being able to be positive about the prospect of maintaining my recovery because the system keeps kicking me down. All made worse by the speech making and promises about mental health. My response to Mrs May right at the moment on how to achieve a major step forward in helping those of us with mental health issues is: please provide an adequately qualified assessment of mental health conditions using those who have experience of the complexities inherent to decide how my condition affects me on a day to day basis.

You may detect from the tone of my opening paragraphs that I have failed (again) in my paper appeal against the wholesale loss of all disability related benefits which has stripped out two thirds of my income. I am now facing the prospect of having to present my case within a courtroom to a panel which will include a member of the judiciary.

The following is the basis on which my appeal failed (bearing in mind that I have been unable to cope with reading any correspondence from the DWP since last June, anything that I know has been filtered by my support worker, so I did not have the full impact of the decision):

1. Prior to the assessment, I had suffered a number of vomiting bouts related to anxiety and stress caused by the PIP process. I decided to take additional meds to ameliorate these symptoms so I would not be sanctioned for missing the appointment. This was cited as evidence that I was managing my symptoms. Despite obviously overdosing on a range of medication this was not recognised by the 'health professional' or the faceless and nameless assessor at the DWP. This betrays a significant lack of medical knowledge related to the medication of complex co-morbidities related to BPD (Borderline Personality Disorder, aka Emotionally Sensitive PD).

2. Because I am intellectually capable of being able to read, interpret and use bus timetables, it was assessed that I do not struggle to use public transport. This is despite me explaining my experience of high levels of anxiety and inability to cope with large groups of people and sudden changes to timetables caused by road traffic incident, road works, etc.

3. The 'health professional' assessed that I was only affected by fluctuating moods on approximately 2-3 times a month. This directly contradicts the information I provided during the asssessment, or, indeed any rudimentary understanding of the major symptoms of ESPD. At the outset of the assessment interview I asked the assessor about his understanding of mood disorders in general and Personality Disorders in particular, he stated he had no experience of mental health, and none at all of PD. Given the complexity of diagnosis and the need for specialist intervention in order to accurately assess the groups of symptoms evident in ESPD, the PIP assessment is at best a blunt tool and at worst an actively vindictive weapon which effectively exacerbates the worst of my symptoms.

My overall observation of this assessment is that even for physical conditions it is rudimentary in the extreme. There is no scope for assessing those of us considered 'high-functioning', ie there is no method for assessing the emotional and mental impact of my mental health condition. It can only assess my intellectual capability which entirely misses the point of how mental health conditions affect people's ability to function on a day to day basis.

Overall my feelings at the moment are frustration and impotence. I know the progress I was making in trying to rebuild a life which allows me to manage the worst of my symptoms has been stopped in its tracks. Following the indifference and active anti-pathy towards the more vulnerable in society evident in our political leadership and rhetoric, I fear that I must become accustomed to my place on the rubbish heap of society. Simply because it seems that, at heart we, as voters will always put our own self interest ahead of everything else.