Sunday, 14 May 2017

Taking the 'PIP' (Part 3) Relapse

Relapse. There it is. In black and white. After nearly three years of slow progress towards a semblance of stability, in March I found myself referred to the Single Point of Access by my GP, following what felt like a major setback.



I'm avoiding the term 'breakdown' because I know I have been much lower, for longer, in the past. However, given that I had been contemplating ways to go back to paid work, this time last year, to be faced with the full extent of my regression and loss of emotional stability, felt like a slap in the face.

The major trigger? The ongoing uncertainty over my financial stability and the emotional impact of going through a PIP appeals process which is destined to end in a court hearing where I have to prove that the impact of my emotional and mental instability significantly impacts my daily life. I returned my request for a tribunal on 10th January 2017 and am still awaiting a hearing date. That along with the hardship caused by losing two thirds of my income in one fell swoop has had a devastating impact on my ability to manage the symptoms of my condition. I became exhausted with the effort of trying to manage my day to day life. Something the PIP payments are supposed to help with. Eventually, I became so exhausted I started to press my self destruct button, repeating self defeating behaviours from the past, because it seemed that no matter how hard I worked to maintain my recovery it seemed as if I were the mole in the arcade game and circumstances, particularly the system designed to support me and which I had paid into for most of my life, was wielding the large mallet which was constantly crashing me down, every time I managed to push myself up again.

Meanwhile, a decision on my PIP payments, which replaced the DLA is still awaited. The process has now lasted nearly ten months. I have never received any mobility payments, but the additional daily care component had allowed me to continue to work on a part time basis for nearly two years more than I would otherwise have been able to following my initial diagnosis. I am in 'limbo' unable to move forward towards paid employment, paralysed by a complex mix of stigma, over qualification, lack of transport options and the lack of confidence caused by my experiences of employers and interviews over the past five years. Who wants to take a chance on someone with my mental health history?

This situation became untenable, the skills which were helping me to maintain a level of stability were essentially rendered useless as I was overwhelmed by the complexities of a situation beyond my control.

The good news is that in the time since my last referral into Mental Health Services, there has been a recognition that for someone like me, a hospital ward is not a positive environment, nor is it somewhere that I seek to be to find safety. I am currently under the care of the Home Treatment Team (HTT), but needed acute care in the initial crisis period. I was offered a place on the Acute Therapy Service (ATS), an intensive six day placement which required me to travel to a local unit where I spent time undergoing a booster for mindfulness and Dialectical Behaviour Therapy (DBT) Distress Tolerance, Emotion Regulation, in addition to Occupational Therapy approaches, Mentalisation, Holistic therapies (I opted for head, shoulders and neck massage) and art therapy.

As with DBT, the success of the ATS requires a high degree of motivation towards self management. Having benefited from the 18 month DBT programme I found that I was able to refresh some critical skills I had lost over time, as well as having a fresh approach from an OT perspective to 'regrouping'. Throughout there was a recognition that during my stay some 'magic bullet' which would have removed all the factors in my life that ground me down, was impossible. There is no such thing. What I was provided with was space to let go of the pressure to keep going regardless of my ability to do so, space to remind myself about the importance of self care and self compassion and most importantly an effective structure in which to begin to regain my sleep routines. As with the main DBT programme I left with a reminder of what I could manage, my limits, a structure in which to regain my emotional stability and most of all, a belief that I could cope.

The uncertainty around the PIP has not changed, in addition there is destabilising atmosphere of an election campaign which offers little hope of respite of those affected by 'Welfare Reforms' - I am accepting that this environment is too strong for me to fight on my own. Above all, the injustice inherent in the PIP assessment process is something which I cannot win against on my own. I must stop 'tilting at windmills' and use what energy I have to survive and hope that I can regain what has been lost through this period of relapse. Above all, I am reminded that recovery is not a straight line.

Monday, 16 January 2017

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'.



Monday, 9 January 2017

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.

Saturday, 29 October 2016

Taking the 'PIP'

Two weeks notice then I lose a third of my welfare payments. It is the promised one third cut to disability payments as a result of the ongoing welfare reforms. Those who have followed this blog for any length of time will be aware that the first half of this year was dominated by the Work Capability Assessment (WCA) to decide whether I would be placed on the 'work' or 'support' version of Employment Support Allowance (ESA). The work based group received 33% less income and claimants are required to adhere to a punitive and cruel regime of seeking work and attending work related activity - as they have been deemed 'fit for work'. If they fail to adhere to arbitrary rules such as not being on time for appointments at the Job Centre ('on time' means even five minutes late, regardless of the circumstances) results in immediate 'sanction' - or suspension of payment of ESA ie the person being sanctioned has no income at all (it is estimated that thousands of individuals have died as a result of ill health following being assessed as 'fit for work' and nearly 60 suicides were attributed to the impact of the WCA and sanctions in the past three years).

Due to a deterioration in my mental health as a result of the pressures and anxieties around the inhuman WCA I was referred by my GP for assessment by the local Mental Health Services crisis team. Due to my presentation and the evidence presented from my medical records I was placed in the support group. This took place between February and July 2016.

By August I was beginning to stabilise and return to my recovery path, when I received a form to apply for Personal Independence Payments (PIP) as my Disability Living Allowance (DLA) was due to run out. Once again into the damaging cycle of trying to present the most accurate evidence of my condition and how it affects me on a day to day basis. To help those who are confused by this array of different 'benefits'. ESA is usually based on your national insurance contributions, and is a basic income. DLA was a payment (even if you were working) which was designed to help people meet the additional costs related to their disability. For me, it helped me remain in work for two years but on part time hours. It also meant I could maintain the cost of keeping a car which also enabled me to remain in work. PIP is designed to replace DLA.


When assessed for the WCA I was assessed by someone who clearly had training and experience of working within Mental Health Services. The questions related to my condition and the difficulties I faced in trying to get appropriate work. Although the process was highly distressing and resulted in a referral to crisis care, myself and my friend, who accompanied me felt the assessor did her best within a flawed system.

The PIP assessment was carried out by someone who by his own admission knew 'nothing about mental illness'. In particular when I asked him about his knowledge of mood disorders such as Bipolar and Personality Disorders and the similarity, differences and impact of their symptoms again he admitted his ignorance. But in the end it didn't matter because a PIP assessor's ability to deviate from the onscreen form which clearly is much more limited than necessary particularly in regard mental health conditions, is negligible. On the day of the assessment I had reached the end of a week long period during which I had suffered three or more severe migraine attacks due to the level of anxiety triggered by my receipt of the letter informing me of the date of the assessment. Given the levels of distress and relapse encountered earlier in the year I struggled to manage my worst anxiety symptoms. This included disrupted sleep through several nights of nausea and vomiting. Due to the threats of immediate loss of DLA payments if I missed the assessment and having used up my one opportunity to rearrange the original date so that my friend could accompany me, I had no option but to take all of the medication I needed to be able to at least function on a basic level.


Unlike the WCA assessment during which I was tearful and extremely distressed, I appeared, no doubt like a zombie in the PIP assessment. Despite myself and my friend explaining the impact of the WCA assessment on my mental health and my current consumption of beta blockers and migraine meds to manage anxiety symptoms, I was informed in the decision letter that he assessed me as 'presenting no visible signs of anxiety'!

I provided exactly the same level and quality of evidence in my written form as well as my answers to his questions, as the WCA interview, yet the outcome was not only vastly different, it actually resulted in an assessment of 'no need assessed'. This despite my explanation of the importance of being able to maintain access to my own transport in order to maintain friendships and stop isolation, as well as helping me to perhaps make money from tutoring when I felt well enough, as well as my concerns about creeping obesity as a result of my deteriorating emotional stability. I was unable to complete the cognition tests as a result of the migraine and beta blocker medication slowing my thought processes and as a result me becoming tearful and distressed because I couldn't complete a simple maths test. Instead of noting this down, he informed me that he had decided not to report my difficulties as it meant he would have to inform DVLA and could result in a loss of my driving licence. I accepted this at face value, but on reflection, this was a distortion of my presentation during the assessment and therefore, proved detrimental to my PIP application.

(Below is a graphic from information for candidates for PIP assessor roles published by Capita one of the larger private companies currently contracted to carry out assessments)


Initially, given that I have now spent the best part of a year dealing with the DWP assessing my mental health, a process which has severely disrupted recovery from long term mental health issues, I could not face anymore dealings with them. However, having found out the result and read the decision letter an NHS support worker has encouraged to go through the appeals process. This will be slow, probably take up to a year to complete and meantime I have to reduce my budget to an even lower level. I am in a better position than most, in some ways, as having a mortgage means that my monthly housing costs are lower than those who rent. However, ironically, if I were renting, I would have my house paid for entirely, so would not have to find monthly housing costs out of my much reduced income.

I have lost my car, which means that my access to paid work which will allow me to continue to manage my symptoms is even more limited as a result of this decision.

Given that I struggle on a daily basis to maintain a level of emotional stability, the uncertainty of nearly a year with my income being threatened has been unhelpful to say the least. Most of all, I am weary of the struggle. Yet, I know that having been able to work for nearly forty years, I have more resources than some. I have supportive family and friends who do not belittle me or ignore my value, because I have been struggling with this condition. I am aware that such understanding is a small oasis in a desert devoid of compassion or care for those we used to consider our neighbours. I have observed as the country I live in has descended into a morass of fear induced bigotry and ignorance of the needs and lives of others, particularly those in need.

It is painful to realise that the impact of Brexit has not caused much of a ripple in our wider media debate until people's own pockets and personal comfort was threatened by price rises to Marmite and Pot Noodle. My biggest fear was the loss of a protector bigger than the current cabinet and previous cabinet who have been prepared to impose austerity on the most vulnerable in our nation, in the name of paying down the deficit. Something, they have failed singularly to do. Without the EU there is nothing to stop the current government from pushing through the abolition of the Human Rights Act so that they cannot be challenged legally over erosion of disability rights.


Brexit was always more complex than the puerile sound bite farago which was foisted upon us as a nation. Unfortunately, some of those who hope that leaving the EU behind will solve all problems of poverty and inequality in this country will be sorely disappointed. The government voted into power in 2010 have deliberately targeted disabled people, over those of pension age, £9,000,000,000,000 is the current state pensions and other age related benefits bill. IDS stated in a recent documentary that it was a deliberate political and electoral decision. Think about that, we have voted twice for a government which has deliberately and carefully CHOSEN to take money from the most vulnerable in order to obtain and retain power. I know I need to be cynical, I know I need a thicker skin, but it actively hurts to think that the majority of fellow voters have also CHOSEN to vote for self preservation over collective good and battling the winds of economic and national storms together.

In order to manage to cope with the prevailing mood and rhetoric from the UK and the USA I have to retreat into box sets and pray for a change of heart in our government and nation.

I know I have written a long piece, and I am grateful if you have read this far. It is a way of explaining my lack of posts over the past year. I hope that it gives some small window into the reality of so many people. Not everyone has the platform or skills to be able to articulate the impact of PIP and WCA. Very easy for some newspapers and political party to dismiss. All I ask is for someone to speak up on our behalf. Surely our country is better than this?

Monday, 19 September 2016

Words (and their impact on Recovery)

'The verb is 'to crown'!' As I write I am shouting at a journalist, supposedly an artful practitioner of our language, telling me that someone is on in the process of being 'coronated'! Grrrrr. I would not call myself a grammatical tyrant, but really folks, English is so difficult to learn as a foreign language, precisely because we can carefully choose the words we want to use in any given context. I used to liken grammar to a train. It makes sense if you label in a very specific way... anyway I'm not about to launch into a Year 7 parts of speech lesson, although I have had a hankering for teaching recently. Anyway, the main thrust for my imagery was to convey to the children that how we structure our words is vital to helping us become really good at communicating what is in our heads to the world around us.


Of course as we grow older we find that not only have we left the childish belief that 'words can never hurt me' behind us, but we realise there are certain words which not only convey an idea, but can be loaded with judgement. Words like, 'unemployed', 'mentally ill', 'immigrant'carry with them sometimes very dark judgements, mostly about people who have a different background or experience to us.

One thing I have noticed as I have continued on my recovery journey, is that I am now more sensitive to certain words and, as a result, they can have a devastating impact on my emotions, often triggering feelings of failure. Sometimes it's a single word, at others it's a well worn phrase, or a sentence. Here is a selection:

Relapse. When I was working with drug users in recovery there was much discussion around 'lapses' and 'relapses'. Our mantra was 'a lapse is not a relapse...' I have found that when I face struggles in recovery from my emotional issues everyone refers just to a 'relapse' which to me means failure, going back to square one, letting myself and everyone else down. One word, but so much weight of judgement. I have combatted this by dropping the 're' and saying to myself 'a lapse is not a relapse' A lapse means that I have been overwhelmed by a moment, it is a temporary setback, recoverable. I can reset myself from a lapse. To me, for a relapse to happen means I have needed more extensive outside help to recover from out of control emotions and/or I have reverted to using self defeating coping mechanisms. It may seem a small thing, but the addition of a prefix totally changes my reactions and/or actions to recover again.


Mental Illness/Condition/Issues: I could call what I battle with, 'bagel', that way I can totally avoid judgements being loaded on me by others who have interpreted what suffering from a Mental Health Condition means. The problem is that without giving you my history and context the word is out of place and therefore fails to convey the ideas I am seeking to communicate. Hence it is problematic if I launch into my story by telling you that 'I was diagnosed with 'bagel' in 2011'. Sometimes I have the choice to ignore other people's judgements and values applied to certain labels and choose to redefine them for myself. If I believe that mental health conditions are just the same as physical health conditions, then why wouldn't I be willing to use commonly used phrases which are basically descriptive. The best way to tackle stigma is to introduce the ignorant to human reality. It is powerful to stand in front of a room and be able to admit that I struggle with my emotions and sometimes my thinking becomes clouded as a result. Particularly in recovery this can be more productive for me than focusing on trying to change people's use of specific words - why not simply introduce them to the person they avoid behind the labels?

Vulnerable v Fragile. One thing I heard through the DBT (dialectical behaviour therapy) programme was that although I may be emotionally vulnerable at times, I am not fragile. There is a song by Julia Fordham called 'Porcelain' and it expresses that frustration women often have when treated as 'weak', needful of protection. I know there is a paradox here. It is nice to be looked after, to know that people care for our needs. I guess there is a line, maybe it's similar to the one some relationships cross when 'protective' becomes 'possessive'. There is a sense of smothering, of not being trusted to be an adult, a loss of independence. I think there is an element of seeing patients as 'fragile' which contributes to the environments in Mental Health services which create dependence and that thorny little issue of 'learned helplessness'. Granted there are times when it would lovely to have a white knight swoop me up into his strong arms while he whisks me away from my daily grind and struggles. Except, those moments are really meant to stay in my childhood stories and now, sometimes in the cinema. Most importantly, for my ongoing recovery, to see myself as having vulnerabilities without being 'fragile' is important to giving me a sense of control over my life and more especially, my emotions. My goodness, if my experiences in life have not shattered me, there must be a core of steel in there somewhere. I may be a product of my past experiences, but I am no longer their prisoner.

The issues around Mental Health Stigma are part of a wider demonising and marginalising of certain groups nationally and internationally. I do listen to Donald Trump and worry that he is so oblivious to the power of words, particularly when conveying vacuous and bigoted ideas. In the end no word is an empty vessel, I need not only to take heed of my internal judgements, but also the fact that those who hear my words carry their own history which affects their interpretation of what I am saying.

Perhaps, the conclusion to my reflections here is that I should remind myself to hear what is behind others' words, as much as I expect others to move beyond their own (narrow) definitions of mine. Maybe we all need to take time to get to know people as people, take the pre-judgement out of our interactions. I know, I am Canute and the waves of words flooding our public spaces is the sea coming in around my feet. Only place I can start is here.

Tuesday, 30 August 2016

On Superheroes, Mindreading and BPD

I have just completed a week in which I transformed myself into a superhero. The hardest part was to come up with my 'superpower' - in the end I opted for the title 'SuperConfused' with my super power being the ability to sow confusion wherever I went. It was quite a wheeze! In case you're wondering, it wasn't an experimental therapy option being trialled near me, it was in pursuit of entertaining 30 odd (sometimes in both meanings of the word) children aged 5-11 for a week of the summer holidays. Yes, I know volunteering is a funny old world!


I'm a reflective soul. Some may call it navel gazing, but occasionally, it yields positive fruit. This time my reflection led me to the realisation that I have been living a double life as myself and my alter ego, the Amazing Mind Reading Woman. This came out most clearly during an overseas holiday in the company of my family and some friends in July.

I have written a previous blog about some aspects of this alongside the phenomenon known as 'Apparent Competence': http://bpdlifeinthemoment.blogspot.co.uk/2014/07/caught-between-two-minds-problem-of.html

Mind Reading as a feature of the symptoms of BPD (Borderline Personality Disorder) will be familiar to anyone living with or seeking to support someone who is emotionally sensitive. There are a number of aspects to this superpower of mine.


1) I know exactly what everyone is thinking about me. Especially when I am feeling stressed and/or emotionally vulnerable this 'superpower' is at its most potent. You see, I know that everyone around me is judging me and at times, loathing me, because that is what I am feeling and thinking about myself, and, my reasoning (confused by the power of emotional waves crashing over me) is that in that moment everyone around me can see right into my rotten core. It is a feeling of emotional and mental nakedness and can appear like paranoia, but in that moment I can have such belief in my mind reading 'abilities' that reassurances will seem to be 'flannel' and so much nonsense, as no one can possibly not recognise what I recognise about myself in those moments. Of course you have to be thinking that. If you struggle to understand the power of this 'ability' think about the number of times you have attributed motives and emotions to inanimate objects as well as total strangers: 'That lamp-post deliberately jumped out of nowhere and hit me smack in the face.' Or 'That driver in the fast lane thinks he's so much better than me, I'll show him.' Ok, so much nonsense which can be easily reasoned away. What if that level of conviction about the ability to see into others motives and thoughts is coupled with the most powerful of negative emotions?

How do we make sense of the world?

It is my understanding that we begin with our physical senses, sight, hearing, touch, taste, smell. We build up an understanding of the world around us through these physical experiences. So far, so simple. Through time we build up a bank of sights, smells, tastes, sounds as our experiences widen. What if we couple these experiences with emotions. For example, sights (a beach), tastes (ice cream, chips) coupled with a feeling (happiness) means that I can evoke a visual memory of happiness just by walking by a chip shop. What if our sense of what we perceive around us is affected by negative emotions? It follows that our emotions lead and overwhelm our physical senses of what is going on in the present moment, so whilst others around us may be oblivious to our internal meltdown, we are living the equivalent emotional response of a disaster movie. While most people may experience the same stressful situation as me, both their immediate response and the length of time it takes to recover from the feelings of anxiety and stress will not be as powerful nor last as long. So, within a couple of hours of missing a flight all my travel companions can be asleep, while I remain wide awake while adrenaline courses round my body, reignited by catastrophising thoughts and heightened emotions. Paranoia about the different experiences between me and my friends, triggers my mind reading tendencies which may continue for several days as I perceive judgement and disapproval - an echo of my own thoughts about myself.

2) All the Bad things in the World are centred on Me One of the paradoxes of low self esteem is that I can convince myself that everything bad that happens is because of something I have thought or done. How's that for a superpower? This sometimes links into my ability to read minds in that I assume everyone will be blaming me. I have apologised for a stormy day before now. Either this is faulty thinking deeply affected by overwhelming feelings of unwarranted guilt, or I am suffering from some as yet undiagnosed form of megalomania!

3) If YOU cared for Me/Were any Good at YOUR Job, you would be able to read my mind! This is the part of my superhero persona which, I think, provokes fear and loathing in others. I will sit at home, or in your office, A&E, wherever, in abject distress and expect you to work out a) how far down I am feeling b) if you should intervene c) how you can help me. Most of the time I am so overwhelmed with distress that all I want to happen is for it to stop. This I know is daunting to anyone dealing with me in these moments. How much of a risk am I to myself/others/you? For me, that answer is, just help me feel safe until the feelings pass.

I've written before of how challenging my behaviour could become in the past with mental health professionals who I had a habit of 'testing'. This resulted in me presenting as functioning on all evident levels, but expecting those trying to help me to be able to read what was going on, under the surface. 'Failure' would result in me going away and pressing self destruct in some more 'obvious' way. Deeply unfair, and likely to perpetuate the feeling of being manipulated by me. For me, those who managed to get past this stage were those who were able to take time to listen, who were allowed to assess me over a period of time and, above all, those who were honest about their limits. 'No one can change your past hurts.', 'I can't stop you feeling this bad about life', 'life sucks'. Reality and honesty have been the best tools used in helping me build therapeutic relationships.

In friendships and relationships I am challenging to love to say the least. My silence can be a gauntlet thrown down to challenge you to demonstrate a) how much patience you have b) how much you really love me, especially when I am not communicating c) Whether all the failed and failing relationships of the past, are really in the past, or if I can push you to reject me too. As with the professionals who have had to work with me, I can expect you to be able to read my mind. In the end, sticking to boundaries and being consistently straight and practical is better than joining me in my emotional morass.

Thankfully, I have not lost any friends for a number of years, either I've changed or people are more accepting of me. Another, thing that has changed is that I no longer tolerate 'bad' friendships or relationships which are not good for me or my emotional health. I don't have to invest in damaging relationships for fear they will be the only people who could care for me.... recognising that any level of abusive behaviour, does not constitute love. Actions do speak louder than words where this is concerned!

How do I get myself out of the Mind Reading loop?

1) Stop the physical symptoms of anxiety/anger. There are a number of techniques which have helped. The one tool I carry with me all the time is my breathing. If I can slow myself down by practising mindful breathing, this helps me regain control of my emotional responses. Another technique which is more of an immediate shock to bring my heartrate down is to plunge the whole of my face (right to the edge of my ears) into freezing cold water. If there isn't the means to do this, it helps to carry a freeze pack in my handbag which when held to my eyes for up to two minutes (or as long as I can stand it), has the same immediate effect.

2) Use my Senses to focus on my immediate surroundings. It helps to maybe suck a sweet and focus on the sensations, taste etc.

3) Identify the feelings. If I can name them, I have a number of DBT strategies I can use to manage them, until they subside.

4) If I have a relationship of trust, check out the reality of my beliefs about what others are thinking.

The times when I find myself mind reading have lessened over the past few years. However, life has unexpected twists and turns and sudden changes/crises may result in me assuming the superhero in me must be right about what is going on in your head. Every now and then I need to be remember that superheroes are for comic books and that I am not the Centre of the Universe, nor am I the Carbuncle of the Cosmos around which everyone and everything revolves - which means I am not personally responsible for tornadoes in Oklahoma, or the dodgy schedules of international airlines!

Monday, 20 June 2016

The WCA, My Recovery and Me (Part Two)

Two months after the upset caused by the process of filling in and sending off the form (ESA50) (http://bpdlifeinthemoment.blogspot.co.uk/2016/04/the-wca-my-recovery-and-me.html) and five months after the initial letter landed on my doorstep, another official envelope arrived instructing me to attend my 'face to face assessment'. I had two weeks notice. I do not feel like reliving the experience of the assessment here. I have previously explained the impact of the WCA process on my emotional stability. Given the length of time taken from the start of the process to the actual assessment itself along with the usual day to day pressures and some pressures related to having elderly infirm parents, struggling financially, having plans to work towards more long term income solutions fall through, it is hardly surprising that I have found myself in a period of 'relapse' and was referred to the Crisis Team. Thankfully, the support and skills I have worked hard to develop kicked in and I have not had to have any further referrals to Mental Health Services.


I remain emotionally vulnerable and raw. I am moving myself back to the basics of recovery which helped me to get this far. I don't have the emotional wherewithal to explore the emotional fallout of the assessment, which was two weeks ago now. I do however, have some observations to make about a process which is not fit for purpose. For those implementing it and those of us with the misfortune to have to rely on any support resulting from it, should we be found not to be selfish, malingering, charlatans.

1) My assessor was as helpful and compassionate as she could be under the circumstances. This reinforced how ill conceived the WCA process is. She was faced with the emotional outpourings of both me and my friend, who attended, thankfully, to support me. We encountered at least one person in the waiting room in absolute distress, but with no company and the assessor seeing her off with just a tissue and some kind words. Who, I wonder, has to pick up the pieces?

2) The first letter arrived at my home at the end of January. It is now Midsummer's Eve and the process is still not complete - I anticipate I will get a decision some time in July. Should I be placed on the Work Related Activity (WRAG) ESA Group I will immediately lose £30 per week and be forced to undergo endless applications for jobs which are ill suited to me or my skills and experience, or risk losing all financial support through sanctions. If I choose to appeal (which we are officially told takes six months, but in practice takes much longer) all payments will be suspended pending the outcome - the DWP has now recruited and paid for a team legal experts to fight these appeals as they were losing at a rate of 85% of decisions being overturned on appeal. This is not about saving money or becoming more efficient or encouraging people like me to be confident enough to return to full time employment, but about dismantling a key component of our welfare system.

3) I am due to undergo the same process from November for the Personal Independence Payments (PIP) which are due to replace my current Disability Living Allowance. At this rate, my 'review' of benefits will have taken well over a year to complete. It has already set back my recovery and my progress towards meaningful employment, by at least three months. My question is, given there are two teams situated in the same building in my local county town, why am I going to have to complete exactly the same questions, provide exactly the same information about exactly the same conditions (albeit a few months later) for payments which have historically been inextricably linked, given that one (DLA) results from the assessment of physical and mental needs performed when applying for or reviewing. Once again, I am forced to conclude that the DWP are prepared to go through the tendering of contracts, with the costs that go with it, invest in putting those with disabilities through a system which is designed to 'test you to destruction' as my friend observed, in a bid to 'root out' malingerers.


There has to be a better way. When Benefit Fraud accounts for less than 1% of the Welfare Bill, when disability benefits are a tiny fraction of the total welfare budget compared to the State Pension and Tax Credits; just because I can be easily dismissed as 'emotionally unstable','mentally ill' - an outsider, does not mean that I and others struggling with long term, complex mental illness do not deserve better.