This week I attended a referral appointment with a bipolar specialist, at the behest of my usual psychiatrist who had somewhat hit a brick wall in finding effective ways to treat my increasingly intense and unmanageable symptoms. I had already been told that I had a particularly tricky and problematic bipolar presentation, but I think we both hoped that the specialist, a well-respected academic and practitioner and expert in bipolar disorder, would be able to see the wood for the trees and demystify things a little. Perhaps he would categorise my current episode as something more conventional and offer a clear and uncomplicated treatment plan. Clear and uncomplicated – two words that I would come to understand were far from descriptive of my particular presentation or ‘strain’ of bipolar disorder.

I arrived at the hospital terrified. I didn’t know what to expect and I contemplated cancelling the appointment altogether. My mother came with me and we sat in the car park as I looked at printouts of my blog posts that we both considered using as a guide to explain how I have been feeling these past weeks. I decided, in the event, not to use them as reading them to myself just distressed me more. I read the ‘voice’ aloud in my head and it frightened me. As we were buzzed into a building with high fences around it, a building I feared might capture me like a spider’s web, we were ushered forth towards Dr H’s office. He asked whether I wanted my mother to accompany and, out of politeness, I asked “Do you want to come in?” – we agreed that she would come in with me. In the past I have been very anti taking anyone into my appointments as I viewed them as private and a zone where I could say things that I would never say to anyone outside the confines of a psychiatric clinic. And perhaps this has been a mistake because the two spheres of my life cannot then compliment each other and the support I need cannot be adequately given, continuity cannot be assured. But throughout the hour and ten minutes was in Dr. H’s office, I was reminded of a quote from Kay Redfield Jamison’s An Unquiet Mind:

“Mother, who has an absolute belief that it is not the cards that one is dealt in life, it is how one plays them, is, by far, the highest card I was dealt.”

I realized that my mother is also the highest card I was dealt too – she helped shape and flesh out my medical history particularly in areas that I was simply incapable of exploring. The appointment turned from being subjective to be partially objective, or at the very least, less stuck. A full psychiatric history has never been this thorough; it could never have focused on my mother’s pregnancy and my behavior in early infancy because it is possible to recall such things.

And so it went: we fleshed out my entire psychiatric history together and for the most part my early life seemed to fit almost entirely the pattern of early onset bipolar disorder: extreme anxiety, phobias, bouts of temper. But then somewhere around the age of 13, something went array. It was here that the disconnect between my reality and everyone else’s became apparent. I don’t remember anything but suffering from waves of depression washing over me every few months and feeling more at odds with my environment. I felt completely alien and for a brief moment of time I believed I might well have come from another planet – that would explain why I felt such a freak of nature. I would sit on the floor alone with loud, malevolent voices in my head telling me that I was abnormal, unworthy, sick.

But this isn’t what everyone else saw. Everyone else thought I was on the upper end of a badly behaved problem teenager. It was very difficult to hear my mother describe how violent and aggressive I had been, that I could be scary. I see these episodes as black outs because it’s like entering into a dark terrifying tunnel where the mood is all I remember, not my actions. To be described as violent was very distressing. Is very distressing.

Perhaps these bouts of rage and the waves and waves and waves of depression took its toll on my neurochemistry. Even as a young child some of my behavior was clearly abnormal at times. What came to be revealed was that I simply never developed a neurological roadmap, no networks for self-monitoring and recognizing when I was about to enter an episode and definitely no tools to deal with my moods when they turned on me. Had my symptoms been recognized as what they were it is possible that some of the poor wiring could have been undone, but this never happened. I slipped further and further into my hidden reality and became entangled in a neurochemical maze. This left me with no way of dealing with things when my bipolar disorder really came to the fore in my 20’s.

I described the agony and the ecstasy of my full-blown bipolar disorder: the highs and successes and accolades and promotions; the troughs and horrors of my escalating hypomanias that shot through into psychotic manias. All as the textbooks describe. Which is all well and good, but it is the shame of all of this that is often the germ of bad things to come. I gave a full account of as much as I could bring myself to describe, but one thing had become evident. Dr. H looked directly at me and asked:

“When was the last time you remember being stable?”

And I was stumped. I opened my mouth, but couldn’t answer. I deferred to my mother: “What about when I live with you?” But, no, she didn’t view that as stable or a period of remission. Had I been unstable all this time? And by ‘all this time’, essentially forever. All this time being treated for something that had been so extreme it had been difficult to medicate or manage. Or impossible. Definitely, I admitted, my symptoms over the past five years had become so awful that I had been in treatment for much of the time and with very little success. This is why I was there; this is the state of affairs that had left my usual psychiatrist foundering.

I have never been stable. I have never been in remission. And now I was stuck in an endless loop of rapid cycling (and what feels like gathering psychotic fractures). The elastic band had been tightened up too many times and had snapped loose. Here I am stuck with wiring that is now irreparably damaged. In his words, “you have a very difficult illness that has become very entrenched; you never learned how to experience and moderate your moods and now you’re stuck in this pattern of intense rapid cycles.” I’m stuck. I’ve been on close fifteen different medications and still I’m ill. To him there was cause for some hope, there was one main mood stabilizer I haven’t been on, sodium valproate, and he thinks we should experiment with this, but I can’t help feeling that this is a last resort. I can’t help feeling that, after a thorough exploration of my entire medical history, and being given a definitive diagnosis, he’s handed me a death sentence. I’ve had 35 years of struggle and I don’t want to live with another forty or fifty years more of anguish. The consequences of my bad wiring have ripped through my life mixing my hidden reality with my daily existence – the consequences have been catastrophic. Even the results of the labours of medical professionals and caring family members have not soften the edges and mitigated the symptoms of my escalating crises.

So what can we do? We take our meds. We say the things we’re supposed to. We try to be as candid as much as possible. We live this life of pain; this life that runs roughshod over everything. Because it does feel finally that with a categorical diagnosis from a renowned expert this label is my life. That I AM bipolar. It is me. We have intermingled. Is it possible to live with the consequences of a hidden reality that wants desperately to come out of the shadows and tear through the skin of my life? Because, yes, it feels like I’m now on death row. This is the problem of mental illness.