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CHAPTER 1
LIVING ON THE BORDERLINE
I was diagnosed with borderline personality disorder in January 2008. At this time, I was a middle manager in a local authority. This is the story of my gradual transition from gamekeeper to poacher.
Had I been waiting for some manner of surgery or medical intervention, then my treatment – in line with department of health directives – would have started within 18 weeks. However, since I have a mental health problem, the time between referral and treatment is not dictated by any such directives. Psychiatric waiting lists are locally managed with no clear guidelines to ensure consistency or equity of care.
'So what do you think I've got?' I was terribly earnest. This diagnosis had been a long time in the making.
'I don't like labelling people,' Dr Brown, my psychiatrist, was just as intense.
'But if you were to give me a label?'
'Well then, Mr Young, I'd have to say you display many of the traits of borderline personality disorder.'
Had I been one of my less knowledgeable colleagues or a member of the general public I might have thought, 'Oh, that's all right then – I've nearly got a personality disorder,' or, 'borderline personality disorder, what the hell's that?' That, however, was not the case.
The latest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), which is used by the American Psychiatric Association, describes BPD as a cluster of symptoms. If a patient displays five or more of these then they can receive the diagnosis:
1. Frantic efforts to avoid real or imagined abandonment. [Not including suicidal or self-mutilating behaviour covered in Criterion 5.
2. A pattern of unstable and intense interpersonal relationships characterised by alternating between extremes of idealization and devaluation.
3. Identity disturbance: markedly and persistently unstable self-image or sense of self.
4. Impulsivity in at least two areas that are potentially self-damaging (e.g. promiscuous sex, eating disorders, binge eating, substance abuse, reckless driving). [Again, not including suicidal or self-mutilating behaviour covered in Criterion 5.]
5. Recurrent suicidal behaviour, gestures, threats, or self-mutilating behaviour such as cutting, interfering with the healing of scars (excoriation) or picking at oneself.
6. Affective instability due to a marked reactivity of mood (e.g. intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days).
7. Chronic feelings of emptiness, worthlessness.
8. Inappropriate anger or difficulty controlling anger (e.g. frequent displays of temper, constant anger, recurrent physical fights).
9. Transient, stress-related paranoid ideation, delusions or severe dissociative symptoms.
Personally, I display around eight of these traits.
In the UK we use a different diagnostic tool: The World Health Organisation's International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10). In this they talk of a comparable condition: Emotionally unstable personality disorder – borderline type.
'So what?' I hear you cry. Does it really matter that there are different tools and definitions for the same condition?
It does when all of the health professionals I've worked with use the American rather than the UK model. For a condition where confusion and misunderstanding is already rife among the public, health professionals, and those who may have attracted the diagnosis, it is essential that there is just one clear definition of BPD that we are all working to.
I recently met an old colleague and friend of mine who I hadn't seen for a few months. We soon got chatting and she told me about another friend who had contracted cancer and was dealing with all the treatments attached to that. We both made all the appropriate concerned noises, but, being British, nothing too over the top. We were, after all, in a public place!
Jane had heard that I'd recently left social work due to my mental health. Again, all the right quiet noises were made. She'd worked with me at the time when I was first told that I had depression.
'Turned out it wasn't depression after all,' I smiled brightly at her, 'I've been diagnosed with borderline personality disorder.'
Jane's hands flew up to her cheeks as her face contorted into an expression that had only previously been seen in Munch's The Scream. She took a step back and squealed.
She may have said, 'Oh my god.'
'It's not a death sentence,' I said, in an attempt to dilute the situation.
'Sure,' she said, taking some steps to compose herself. 'We'll speak later.' And off she went.
The interesting thing about Jane is that she is a mental health officer – the Scottish equivalent of the approved social worker in England. So, what would cause a normally composed mental health professional to react in such a way to that seemingly harmless label, 'borderline personality disorder'?
Over the years BPD has attracted a number of preconceived notions that are now held by many people working in health and social care:
• People with BPD are dishonest and manipulative
• People with BPD are dangerous – after all, Josef Fritzl has been diagnosed with a personality disorder
• BPD is untreatable and the sufferer will have it for life
• BPD is the 'dustbin diagnosis' for people who don't easily fit under the umbrella of one of the other, more well known mental health conditions
• There are some GPs who don't recognise BPD as an authentic condition.
It is hardly surprising, then, that when I received this diagnosis I thought, 'Oh my bloody god. I'm doomed.'
I did what anyone else in my position would have done. I read everything I could get my hands on regarding my condition.
In the meantime, I had to leave the job I'd been doing for 15 years because of my mental health. I'd wanted to be a social worker since the age of 12 and had reached the dizzy heights of middle management. My symptoms were now making this role untenable. At home, my behaviour was becoming more and more erratic and antisocial, causing the downward spiral of distress to my family, feeding into my feelings of alienation as a result.
So I made the decision to move out. I felt I could no longer expose my children and my wife to my unpredictable symptoms.
Suddenly, I was homeless. Suddenly, I was going through the humiliation of applying for Incapacity Benefit, Disability Living Allowance, and Housing Benefit to supplement my social work pension of £218 per month. The whole process felt degrading; at times I felt pilloried, in the stocks, for a paltry extra £35 per week.
Unexpectedly, my reading had revealed a whole raft of treatments that were available for my condition.
In the States, Marcia Linehan had developed a treatment for BPD called dialectical behavioural therapy (DBT), a kind of spin-off of cognitive behavioural therapy that has been used with significant success since 1993. In it, she recognises that BPD is a complex condition that requires a variety of approaches to deal with it. In the UK, Fonagy and Bateman have developed mentalisation, a type of psychotherapeutic intervention that focuses on enhancing the patient's capacity to think about and regulate their mental states. Again, they are experiencing similar levels of success in the treatment of BPD to Linehan.
There is also individual and group psychotherapy. There are therapeutic communities where individuals are removed from mainstream society and placed in what is deemed to be a more validating environment to enable them to focus on their needs.
Although there is no specific BPD drug, pharmacology has a great deal to offer the BPD sufferer. There is a raft of drugs that can be taken in therapeutic doses to stabilise mood and emotions, which enable the person with BPD to make the most of their talking treatments.
The shocking thing for me was that neither I, nor my health and social work colleagues, had any notion of what was around to support BPD sufferers.
A huge problem for the professionals working in this area is motivation. When one believes that a condition is untreatable and merely manageable, then one is a damn sight less likely to pull out all the stops in an attempt to help treat it. So suspicion, fear and resignation reign where, at the very least, there should be hope.
In January 2017, the National Institute for Health and Care Excellence (NICE) published guidelines on the treatment and management of borderline personality disorder. In it, they outline all of the above diagnostic tools, treatments, therapies, and medications that are being used with varying levels of success to help combat this condition. They talk of the need for more research so that patients, taxpayers, and health trusts can get more bangs for their buck.
Therein lies a major problem. Health trusts want to put their money into the most effective treatments. Research is an expensive luxury that they are reluctant to plough the taxpayer's pound into without there being a promise of clear results.
On top of this the NICE guidelines are exactly that – guidelines. In a world where professionals are more inclined to follow protocols that are mandatory as opposed to discretionary, they are much less likely to read through the 476 pages of the guidelines when there is no obligation to.
All of which left me, as gamekeeper turned poacher, on a discretionary waiting list waiting for a discretionary therapy while taking discretionary medication with a diagnosis that isn't recognised by all the relevant bodies.
That said, I feel I have been desperately lucky. After a year on a waiting list, I received group psychotherapy alongside a small therapeutic dose of Quetiapine, which took the edges off my self-harming and suicidal thoughts.
People who attract the label of borderline personality disorder need to be in a position where they receive a clear diagnosis along with a prognosis. From this, they should be able to make an informed choice as to what treatments would best suit them.
In a world where 1 in 4 of us will be profoundly touched by some manner of mental illness at some time in our lives, it really is time that psychiatric services were given the same recognition as the other health and social care services.
Because of the complex range of issues in the BPD sufferer's life, they can place a high demand on health and social care services if they continue unmanaged.
Here's some more info on BPD from NICE guidelines:
People with borderline personality disorder may engage in a variety of destructive and impulsive behaviours including self-harm, eating problems and excessive use of alcohol and illicit substances. Self-harming behaviour in borderline personality disorder is associated with a variety of different meanings for the individual, including relief from acute distress and feelings, such as emptiness and anger, and to reconnect with feelings after a period of dissociation. As a result of the frequency with which they self-harm, people with borderline personality disorder are at increased risk of suicide (Cheng et al., 1997), with 60 to 70% attempting suicide at some point in their life (Oldham, 2006). The rate of completed suicide in people with borderline personality disorder has been estimated to be approximately 10% (Oldham, 2006). A well-documented association exists between borderline personality disorder and depression (Skodol et al., 1999; Zanarini et al., 1998), and the combination of the two conditions has been shown to increase the number and seriousness of suicide attempts (Soloff et al., 2000).
NICE, January 2009
Research is required now to explore the efficacy of the variety of therapies used in the treatment and management of BPD. Without effective support, BPD sufferers will place a higher demand on services, completely outweighing any perceived financial savings made from placing them on lengthy waiting lists.
Finally, comprehensive multidisciplinary training is required to ensure that health and social care professionals are aware of the spectrum of treatments and therapies available to BPD sufferers. This will ensure that service users receive the input they require and the professionals will achieve more of the job satisfaction they crave as a result.
The status quo is not an option. Without radical change now, BPD sufferers will continue to demand a disproportionate amount of services without receiving the input they require.
Borderline personality disorder, for me, is a condition that affects relationships. It can have negative effects on the sufferer and those around them. It can also have positive effects, in that I can be very insightful regarding the needs, hopes and aspirations of others.
I am hugely affected by emotion. Whether it be positive (like love and joy), or negative (like hate and anger), I can twist myself into some terrible shapes in an attempt to experience these feelings at the same time as running away from them. As such, starting friendships and relationships can be a fairly straightforward task for me. Maintaining them is another thing altogether.
Ever since I was 12 years old, my life has been marked by guilt, lies and intrigue. As I grew up, different people would get to know different elements of my truth and my world. That is why I chose to write much of my story from the perspective of my relationships with different people.
And so, without further ado, here it is.
CHAPTER 2
GAMEKEEPER TURNED POACHER
If I'd had my wits about me, I would have had some recollection as to how I had appeared on Ward 6 at the Royal Edinburgh Hospital that day in late December 1993. It sounds kind of innocuous, doesn't it? The Royal Edinburgh Hospital. The Royal Ed. Edinburgh's Bin of Loons. Had I been firing on all cylinders, I would have been struck with the smell that exuded from the carpet in the communal area. It was a heady mix of tea, coffee, biscuits – probably digestives – some undisclosed medicines, bodily fluids and, of course, piss.
The following memories later gradually trickled back to me over a period of weeks, months and in some cases, years.
The male nurse who admitted me to the ward, who was dressed in non-threatening civilian clothing, was a tall bespectacled fellow, whose role it was to ask me exactly the same questions as the admitting psychiatrist, whose role it was, interestingly, to ask me exactly the same questions as the GP.
The psychiatrist did add one thing. If I, at any time, attempted to leave the ward, I would be sectioned. Even in my somewhat unhinged state I was overcome with the righteous indignation of the patient who had been admitted voluntarily. Why say that? Was it just in case I was under some bizarre delusion as to who was in charge here? I was all too aware who was in charge. It sure as hell wasn't me.
Bizarrely, I thought of my time working as a nursing assistant on a long-stay ward in a psychiatric hospital. We were taught control and restraint, part of which was actually being controlled and restrained. It had taken six male nurses to get me down. And that was without me kicking and / or punching. I was acting on the mindset that if anyone was going to section me, I definitely wasn't going to come quietly. What a knob. Only I could be competitive about being held under the Mental Health (Scotland) Act.
That morning, before I'd found myself on Ward 6, I'd been at a Social Work Team meeting at the Western General Hospital. It was held in the hospital's chaplaincy. The meeting started at 9.30, most people drifted in by 10.00 and the ambient 'god music' started, somewhat comedically, at 10.30. This was my first qualified social work job. 'A community care social worker in a busy hospital team' I think the advert had said. I had qualified in late June that year and had started work in July. Seamless.
It was what I'd always wanted to do. I had always wanted to be there for others. Probably because when I was younger, no one had been there for me. Just for the record, especially for all those potential social-workery types, this may not have been the best motivation in the world.
I sat in the meeting smiling and joking. Perhaps I was a little detached. Perhaps I was a little flippant, even sarcastic at times. No one noticed what was going on behind the scenes. Because I'd been a student at the Western, I hadn't received any induction when I'd started work there. I'd been a good student, so I was expected to hit the ground running. So I had.
I loved working on the care of the elderly ward. They hadn't had a dedicated social worker for some time, so they were pretty delighted with me too. They had a backlog of work and they merrily chucked whatever they had at me – and I lapped it up.
(Continues…)
Excerpted from "Walk a Mile"
by .
Copyright © 2017 Chris Young.
Excerpted by permission of Trigger Press.
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