I Googled it, obviously
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In the modern age, I defy anyone to not immediately Google a medical diagnosis – especially one that is not well known. Now that we literally have the wealth of human knowledge and understanding at our fingertips, we can discover anything and everything on our own terms, and for our own purposes. We can accumulate information, and process it as we see fit. These are important advancements, and they are greatly empowering – but, with the best will in the world, typing ‘Borderline Personality Disorder’ into a search engine while experiencing a mental health crisis that leads to a diagnosis is not recommended. I mean, what on earth is ‘Borderline Personality Disorder’, anyway? It’s not even a descriptive name. ‘Borderline’ with what? Am I ‘bordering’ on actually having a personality? How can a personality be disordered? Most importantly, what do we do about it?
It was my GP that told me – over the telephone, almost by accident. It had been about a week since my husband had taken me to the doctor’s office, where he had sat me down and asked him to fix me. I was a wife, and mother of two, and I was suddenly broken. I couldn’t stop crying, I was unable to speak coherently, I was unable to sleep properly, and I couldn’t bring myself to leave the house. I had ceased to function on any ‘normal’ level.
In the beige, non-descript doctor’s office that day, my husband had described my situation from his perspective, and the doctor had asked me some questions while valiantly trying to decipher my garbled responses. The fact that my recollection of that room includes the presence of fourth person, who wasn’t actually there, perhaps gives some indication of the depth of my crisis. The doctor ordered lots of blood tests, made an immediate, urgent request for an appointment with a psychiatrist, and organised home visits from a Community Mental Health Nurse. “I suspect,” he said, in gentle tones, “that you have Bi-polar disorder.”
I was stunned. I knew what Bi-polar disorder was, and was genuinely surprised that he thought that diagnosis might fit. However, he was the highly trained professional, so I deferred to his judgement. Also, I was physically unable to effectively communicate the doubts that were flooding my mind. In fact, I was having real trouble discerning which doubts were about what, and why. It wasn’t that I was having trouble thinking, it was that I was having trouble not thinking. It was like, all of a sudden, my brain had gone into overdrive, and I couldn’t find the off-switch. Everything – doubt, paranoia, anxiety, compulsions, emotions – all of it was blaring at full volume and high speed in the echo chamber of my head, so I couldn’t make sense of any one thing. The blood tests he sent me for were to check hormone levels, thyroid function and to prepare the ground for prescribing lithium, if necessary. A lifetime of lithium, which would require regular blood-testing to make sure I wasn’t being poisoned. Did I mention I have a terrible fear of needles?
The Community Mental Health Nurse got in touch almost immediately, and was soon sitting in my lounge, asking me questions. It was her job to manage me at home, and keep me out of hospital, while intensive psychiatric assessments and treatments were being arranged and administered. We talked in depth about what I was currently experiencing, and how it was impossible to remember what it felt like to not be in the bottom of the deep, dark hole I was in – out of which, I was convinced, I would never again climb. My mood was dangerously low.
Within days, I was sitting in a local clinic, waiting for my first appointment with a psychiatrist. It was a surprisingly welcoming building, with rooms for mental health staff tucked away in the rear wing. A national radio station was quietly broadcasting through a discreet sound system, and disgruntled citizens were calling in to rant about the latest governmental scandal. Just as I began to get lost in their stories, I was called in for my appointment. The psychiatrist introduced herself, going to great lengths to explain that she was not used to dealing with patients my age – she usually worked in geriatric psychiatry – but that a lack of NHS resources meant she was having to broaden her horizons. She coldly asked me a series of pre-determined questions, designed to ascertain whether I had Bi-polar disorder – never deviating from the list, never exploring any other avenue - and when she was finished, she silently made notes, and then cleared her throat.
“You clearly have a personality disorder, and there’s no specific treatment for it.”
Her words hung there. She was not inviting further discussion – this was her conclusion.
“So,” I began, slowly and deliberately, “How do I feel better?”
“It’s a personality disorder. You just need to accept that this how you feel.”
I didn’t hear anything else after that. I thought about my children, and how patient they were with my erratic moods and explosive reactions to things that were, in reality, fairly inconsequential. They shouldn’t have to put up with someone like that. I thought about my husband, and how patient he was with my inexplicable rage, depression, anxiety and bizarre behaviours. He shouldn’t have to put up with someone like that. “They all deserve better,” I thought, “but this psychiatrist is telling me that I will never be able to give that to them.”
She had continued to speak, but I had no idea what she was saying. I walked slowly out of the clinic to the car park, sat in my car, and wept. I thought about putting the key in the ignition and just driving. I was ninety minutes from the coast, and I considered how pretty the view would be if I just drove to a cliff, and didn’t stop. The idea was very calming, and began to fill my head. I was unaware, really, of a car pulling into the space next to mine, until the owner of it knocked gently on my window.
I turned to see the warm, loving face of an old friend, who coincidentally had brought her child to the clinic to see her own GP. She immediately grasped what was happening, and stayed with me – talking to me, and dissuading me from the actions that were crowding my mind. I have no concept of how long we were in the car park, but I do know that, right then, I believed to the core of my being that the unexpected appearance of that particular friend, at that particular moment, was an intervention from the universe. In hindsight, from a rational point of view, that’s clearly what I needed to believe in order for some small part of my addled mind to try and save itself. Eventually, I drove home, and not to the coast - and I told my Community Mental Health Nurse that I never wanted to see that psychiatrist again.
I struggled to shake those dark ideas from my mind, however, and the Nurse worked hard and closely with me and my husband to ensure my safety. A few days later, the GP called. He had gone over all the information gathered since my initial appointment with him – the results of the blood tests, the report from the terrible psychiatrist, and numerous written and verbal reports from the Community Mental Health Nurse.
“So, we have a clinical pathway to put in place for your Borderline Personality Disorder…”
This was the first time anyone had mentioned that term.
“What? What’s that? I thought you said I had Bi-polar disorder?”
“Uh….erm….Actually, reviewing the information and results, it’s Borderline Personality Disorder. Your nurse will go through all of that with you, and we’ll get you in for a proper psychiatric assessment as soon as possible.”
And that was that - my diagnosis. The explanation for what was wrong with me. I didn’t understand it. I had no information about it. So I Googled it, obviously.
“A serious condition…leading to self-harm and suicide…”
“Emotional instability…impulsive behaviour…unstable relationships…”
“A pervasive pattern of instability in interpersonal relationships, self-image and emotions…”
“A serious psychiatric illness…A Cluster B disorder, along with narcissistic personality disorder, anti-social personality disorder and histrionic personality disorder…”
I was horrified. The language seemed wholly accusatory. If I have Borderline Personality Disorder, is this how other people think of me? Is this how I appear to the rest of the world? Very quickly, those dark ideas worsened – gathering like a violent storm. At one point, I blurted them out to a neighbour, who nodded toward my children and said, “Don’t put that on them.”
This was the crux of the issue at that moment. My mind – overloaded with out-of-control thinking – was simultaneously being completely consumed by an internal argument. On the one hand, the idea of silencing all that noise once and for all, in permanent fashion, was incredibly attractive. But, on the other, was the idea of my children, and their own mental health. Not the idea that my actions might adversely affect them in some way, but the idea that they might eventually have it, too. So little was known about this Borderline Personality Disorder thing – what if there are elements of it that are hereditary? I knew that a strong thread of depression ran firmly down one side of my family – what if this was a similar sort of thing? What if I took that step of silencing my noise, and one or both of them needed help with something similar in the future?
The long and the short of it was, I could not bear the idea of my children ever feeling anything close to what I was feeling at that time, and so this internal battle began to take a turn. These two halves of my mind that were screaming at each other – arguing their cases, trying to persuade me in one direction or the other – began to edge away from a level playing field, and a sense of determination set in. I began to feel a determination to prevent this thing happening to my offspring. I began to feel a determination to provide them with the right tools to maintain their own mental health in a way that I never could. This was the first time that a single, identifiable, rational feeling had emerged from the cacophony in my head since this crisis began, and it gave me the one thing I required to move forward.
The Community Mental Health Nurse showed up, reliably, time after time, to keep me ticking over. She performed detailed assessments and what were essentially counselling sessions. She explained the mechanics of the illness, and how its nature would affect my interactions with mental health professionals – including her. You see, when a mental health professional treats a person with Borderline Personality Disorder, they have to do so in such a way as to protect themselves from intensive projection on the part of the patient – because this is often a feature of the condition, and is the aspect that historically led to BPD patients being dismissed as untreatable and ‘manipulative’. At the same time, the patient must be fully motivated to recover, otherwise precious National Health Service resources are wasted. In this way, any clinical pathway is considered a partnership between professional and patient – with equal investment of effort from both parties.
The most important part of the Nurse's role, in those earliest of days, was to gently guide me toward acceptance. Being in the throes of a BPD crisis at the point of diagnosis meant that I was exhibiting ‘splitting’ (‘all-or-nothing’, or ‘dichotomous’ thinking), and demanding an immediate cure. Fix it or leave. I want you to make me better, right now – otherwise what use are you? Clearly, this was not an option, but this highly skilled professional patiently and slowly talked me out of my ‘splitting’ phase and, over time, into acceptance, and into our equal partnership. This was the vital first step toward recovery – though I did not realise it at the time.
It is not possible to accept a diagnosis without first developing at least a rudimentary understanding of it – because we are not going to accept something that we do not believe to be completely true. I had been handed this label of BPD, but had no way of seeing how it actually applied to me on the most fundamental levels. My Community Mental Health Nurse steadily demonstrated to me what this vast and daunting psychiatric term actually encompasses, and specifically how it fits with my condition. It was a long, difficult and challenging process, but ultimately proved to be entirely effective because, when faced with the undeniable facts of the matter, I had no choice but to accept the reality of the situation.
Psychology is an ever-evolving field – so great strides are always being made in the understanding of the mind. This being the case, the understanding of BPD has changed somewhat over the years. Historically, it was given its name because the patient was regarded as being on the ‘borderline’ between neurosis (anxiety, hysteria, phobias, etc) and psychosis (delusions, dissociation, etc). In more modern times, it is considered to be characterised by emotional dysregulation, an unstable sense of self (including self-image, identity, and affect), intense fear of rejection and abandonment, splitting, self-harm and suicidal behaviour, depression, anxiety, paranoia, dissociation, and dysphoria.
Coming to understand what the illness is, and how it relates to the symptoms I exhibit was as key to my acceptance of the label, as it was to developing an understanding of my relationship to that label. Then comes the next crucial stage, to which my Nurse ably steered me: control. Perhaps the most terrifying thing about experiencing mental illness is the loss of control. You feel like you have lost control of the functions of your mind, which causes you to question everything it tells you – which is everything, because it’s your mind. In addition, you feel like you have lost control of your long-term care – a loss of autonomy - because you have no choice but to place your wellbeing in the hands of professionals. They know more about it than you do, they’ve seen more of it than you have, and they have the power to make decisions that have a direct effect on the outcome of your treatment. In order to facilitate that treatment and an eventual recovery, it is important to restore some of that lost control to the patient – and with my Nurse, this came from our partnership agreement, and from my self-determination in terms of my relationship to my diagnostic label.
There are people who loathe the use of labels in mental health, and that’s fine. It is certainly the case that these terms - when used in an incorrect context or when bandied about by the media - have led to a general culture of stigma and discrimination. For me, however, I came to the conclusion that my diagnostic label was a positive, for two reasons. Firstly, it allows me to take control of my situation. Finding that my vast range of symptoms is actually grouped together as a larger, identifiable condition, and that this pattern of issues is experienced in eerily similar ways by millions of other people is incredibly comforting. It gives me a frame of reference with which I can effectively communicate my experience to others, and with which I can properly process the experiences of others. It provides me with an avenue of investigation, through which I can educate myself about the illness, and learn management strategies.
Secondly, it is an aid to others. If recovery from BPD requires a partnership between patient and mental health professional, it means that professional must have respect and understanding for the diagnostic label, as much as education and experience in the illness that label represents. This is, theoretically, to the benefit of the patient. To the non-professional – family and friends, for example – it gives them a way to educate themselves about the illness, if they are so inclined. Stigma and discrimination remain an important issue, of course, but for my own situation – borne of a lifetime of experience – my choice is to regard any such negative response as being reflective of flaws within the person doing the discriminating, rather than being reflective of flaws within myself. Am I flawed? You bet I am - deeply, and in a variety of ways – but having worked to develop self-awareness, I avoid projecting those flaws onto other people.
So, ironically, I had arrived at a metaphorical precipice. Having spent weeks listening to people essentially talking me down off a cliff, I was now being encouraged to take a figurative leap of faith. Waiting to catch me was The Psychotherapist, to whom I had been ‘fast-tracked’ by the NHS due to the fact that I had two young children at home, and had demonstrated that I was “sufficiently motivated”. She was a newly qualified young doctor who was eager to learn, and keen to help. Still filled with enthusiasm, she had not yet been brow-beaten by the monumental challenges of working within the beleaguered mental health services of the UK’s National Health Service.
She announced that she was going to help me feel better, and I believed her. The process of one-to-one intensive psychotherapy would not be easy, and things were going to get very uncomfortable. But, we had twelve sessions to generate quantifiable improvement so, while progress would be made safely, we were going to have to look at things that I instinctively chose not to look at – and that would be as much my responsibility as hers. Only then would we truly understand what this terrifying, debilitating illness really was, where it came from, and how it could be managed.
At that point, I did not know that this process would involve generations of history, against a backdrop of global, national, local and personal events, and that I would eventually develop a mental toolkit that would place me squarely in recovery within four years. All I knew was that I had arrived at a metaphorical precipice. Over my shoulder, behind me, there was nothing but darkness – a black, swirling, malevolent fog that wanted to swallow me up so I would be lost forever.
I didn’t want to be lost, so I jumped.