A dialogue with a diagnosis #MentalHealthAwarenessMonth

A version of this essay is included in 'Our Encounters with Madness' Grant A, Biley F, Walker H (eds) 2011. Ross-on-Wye: PCCS Books; Amazon and as the world struggles with the Covid-19 pandemic, one way or the other, it seems more relevant than ever.

The madness, the craziness, all the textbook symptoms come to life — the seductive dreamlike internal logic of psychosis. I'd been fast-tracked to a dazzling paradise armed with cosmic insights you wouldn't believe.

And then it happened again. And again, but gradually with less force, settling into something familiar. It's made of the same stuff as creativity, but now it's at a therapeutic level, without the delusions or loss of touch with grounded reality.

These days the aftermath might mean a few days with my feet up enjoying some sort of work satisfaction or on a bad day exhausted and overwrought but knowing what I need to do to stabilise, to get the balance back. And I'm getting better at that with every year that goes by.

Twenty years ago its effects were cataclysmic: the mother of all post-party regret, the tattered life, another broken relationship, a head full of medication and scattered memories, as impossible to piece together as the contents of a china shop after a visit from that bull. Maybe when your head clears after a party you might remember, and unless you have done anything very extreme, it will be filed away by you and your mates as just a bit of fun. Not so with this. No one regards this as a bit of fun. Perhaps unsurprisingly, it scares people to death. You can see it all over their faces. And as anyone who wakes up from a drunken night knows, the uncertainty of what you may have done or said is pure head-in-hands stomach-turning torment. Going mad blasts embarrassment into a new dimension. And that was the good bit.

What goes up must come down. Or in my case, what goes down must come up. The down came first. If there can be an opposite of the extreme high of mania, it's being suicidal. That unspeakable personal apocalypse, the excruciating state of being for which taking one's own life seems the only solution. How much more sympathy there would be for the suicidal if 'normal' people could experience for just five minutes what the suicide endures for months, or longer.

But, like the dizzy heights of mania, the bottomless pit is not somewhere I often visit these days. I'd say I suffer less from even the ordinary blues than most people I know. I have my tendencies, proclivities, susceptibilities, sensitivities, whatever — I'm an organism in an environment making the necessary adjustments, tweaking levels of this or that to thrive. Doing what every living thing does — trying to get comfortable, looking after myself. (Ten years on from writing this piece, after nearly a decade of extremely challenging and toxic cancer treatment, I have just recovered from the most severe and prolonged depression of my life. I have described this here.)

Things blur with medication. Large chunks of time disappear into black holes, parts of the story of your life, ripped out like censored pages of a book. The very part of the story you wish to read has gone, forever. Crippling side-effects that scared the living daylights out of me — I had them all, and I couldn't handle it. Illness was scary, but not half as scary as its so-called cure. Others may tolerate medication, but for me, there had to be another way.

No one can help you with the decision to come off medication. And no one will be pleased about it. No one tells you that you're brave when you decide to take your health into your own hands. But my second 'psychosis' occurred when I was on lithium, so as far as I was concerned, it didn't work. Had it 'worked' up until then? Was I well because of lithium, or well despite lithium? No one knows how lithium works. But then many things work without us really understanding how, like love, for example, or life itself. After all, human beings have been medicating themselves since the beginning of time without knowing how things work, only that they did work. Or in some cases, didn't. But until relatively recently the substances or treatments available were not industrial, and where there's industry, there's vested interest, needing a persuasive orthodoxy to survive.

Initially, I could accept lithium; after all, it was a natural substance, used for its calming effects since way back. So have lots of other things, some of them known to be very bad for your health long term, and some not. It looked to me like lithium fell into the first category. So, for the long haul, I just couldn't comply. It might be OK for five years, ten, but what about fifty, sixty even? I was 22 years old. When I asked how long I would have to take it, I was told with a shrug that they couldn't say for sure at this point, but, 'Maybe for life.'

Toxic. Toxicity levels. Blood tests. The shakes. The horrible metallic taste in the mouth that toothpaste can't touch. Weight gain. The thyroid issue. The toxic to a foetus issue. The leaden deadness and extreme fatigue. The sapping of my creative flow. The inability to read. Suddenly it seemed that all the things I needed not just to feel good, but to be me, were prohibited. Vitality was to be a thing of the past, a preserve of the 'normal' people. Whose sort of health is that? Society's? The family's? I had been treated (what an interesting word) and dealt with; some unruly part of me had been tidied up and put away. Great if your idea of health is a suppression of symptoms. It isn't mine.

And as for the drugs I was given for my acute symptoms, well, that they were poisonous was obvious to me and anyone who saw me on them. Tongue twisting and writhing uncontrollably. Eyes rolling. Memory in a centrifuge. The almighty crash as the tranquiliser kicked in. Suddenly perking up like some sort of robot, twitching, unable to sit still. Aching legs. Splitting lips. Lactation. Sunshine burning skin. Skin turning to wax. All the poor old girls together in the loos in the morning suffering audibly with their chronic constipation. A constant craving for sugar as the body desperately tries to pick itself up out of this toxic sludge. The inebriated feeling calling for endless cigarettes. No legislator who had ever been on antipsychotic tranquilisers could, in good conscience, ban smoking on a ward. But then no one who had ever been on antipsychotic tranquilisers could, I imagine, even be permitted to become a legislator. And yet it has been, in line with the wider smoking ban. Of course in an ideal world this would be a good thing. But psychiatric hospital is very far away from an ideal world, as I learnt after being pinned down, my trousers ripped off in front of a mixed ward and injected in my backside. I wasn't being violent or endangering anyone. But I was as high as a kite, and at that point I most definitely needed sedation. But might there have been a gentler way? Definitely.

Why didn't anyone tell me about side effects, or, let's tell it as it is, the impairment of brain and body function very possibly leading to long term brain and other damage? Many trials on primates show this. That these drugs are tested on animals is bad enough, but testing them on humans? Is this acceptable? Evidently yes, in a society that is willing to medicate children. No one told me about 'manic depression' either, or even, for that matter, where I was. That was the 'healthcare' that by coming off lithium I was potentially inviting on a regular basis (although I believe that things have improved since the late 80s, and even then I've no doubt this was done by good people with good intentions).

That was my fear and not an unrealistic one. It seems to me that once the initial crisis has abated, medication of this sort should be a last resort when all else has failed. And those wishing to come off medication should have the option of doing so, whether as an in-patient, or at home under a range of therapists, offering psychological, physical, emotional and nutritional care for the inevitable period of 'cold turkey' and beyond, tailored to each individual, with time spent healing a human life out of balance — not its symptoms. I wonder what the results of a thorough and far-reaching cost-benefit analysis of this approach might be. Or should that be a profit-benefit analysis?

By staying on lithium, I felt I could never really heal. Never move on or away from this experience. It filled me with despair that from this point onwards part of the definition of myself lay in a packet of Priadel. I refused to accept that my sanity was to be found in a bubble pack of pills that would damage my health long term. Proud, stubborn, maybe. A risk-taker, probably. But I had assessed that risk. I had met long-term psychiatric patients, and it seemed to me that many were being hospitalised on a regular basis despite medication. So they were not 'getting better'. They had a label and, as they lived the best lives they could between episodes, it all became a self-fulfilling prophecy. It was desperately sad to see.

I think I suffer from survivor's guilt. On seeing others still on medication and stuck in a revolving door scenario, I could almost believe that I must have been a fake: a fraudulent lunatic, a psychotic skiver. But three long drawn out severe depressions, two suicide attempts, two major 'psychotic episodes', three stays in hospitals, being held under Sections 4, 2 and 3 (although I was released before its end) of the Mental Health Act, and a quick look at my old psychiatric notes reminds me that I was, once upon a time, and excruciatingly recently too, in a very bad way indeed. Recently I heard of a study which suggested that people on no medication whatsoever had an eight times higher rate of recovery from psychosis. Maybe I'm not such a fraud after all.

Have I struggled with mental illness? Or fought a battle with bipolar disorder? Not really. I called this piece 'A dialogue with a diagnosis' because in a sense it has been and is still that. Starting from a very low point in a very bleak place, I begin to explore what health was, what health meant to me. My health, all of it, mental, physical, and spiritual. It meant taking responsibility for the decision I made. For the sake of my family and all those close to me, if I was to choose to do this another way, then I had to get serious about it. But that makes it sound like a regimen, which it wasn't. But it was a commitment. And I certainly didn't turn into a clean living fitness fanatic overnight.

With my self-esteem at an all-time low (having been sectioned is hardly a great selling point), the remainder of my twenties was a painful, often terribly lonely quest for oblivion, and preferably in similar company. Stigma and shame are not the best building blocks for recovery. As with the stigma, which you, as a member of society brought up with all that society's fears and prejudices, share, you have to fight hard with yourself against the shame of it — that belief that you are on the scrapheap, washed up forever. That's why I so desperately needed my faculties — physical, mental and creative, to keep boosting and bolstering that battered and bruised sense of self-worth.

I succeeded to a large extent. But it was a hard and gradual process. Life changes as it does, and slowly things reveal themselves. Things happen from the inside out. I got a dog. I had a dependant! I wasn't going to leave him in the lurch in a hurry. I didn't feel better, therefore, got a dog; I got a dog, and eventually realised that walking him twice a day, rain or shine, was making me feel good. It was fun, and he loved me. I met people and had something to talk about, and without even trying, all that drug weight just fell away. I was back in touch with the changing seasons, nature's own mood swings.

I started taking essential fatty acids and read up about diet and health. I still sought out ways of escape, but eventually, in some way, I got the better of myself, rediscovering the wellness that I had lost somewhere in my angst-ridden and confused adolescence. I became interested in natural healthcare and the effects of body chemistry on the brain. I realised how sensitive I was to that body chemistry, to the emotional consequences of the insomnia I suffered so regularly, which had begun in boarding school and never gone away, and to the effects of caffeine, sugar and alcohol. Moderation became my watchword. I came to realise I didn't need the things I thought I needed — I didn't keel over without my props after all. Never let anyone tell you that nutrition and detoxification won't help. They evidently have not experienced the radical shifts in wellbeing that these conscious choices bring.

This research has become my passion, and I now know that exposure to neurotoxins and other pollutants have huge effects on our mental and physical health. We all know that over half our body weight is made up of water. Why then would we pour chemicals into that river and expect health? It's plain to see this doesn't work in nature, that it wreaks havoc on all the organisms and microorganisms in its vicinity. Why would this strategy work in us? Add to that the fear of death brought about by our lack of knowledge of who we really are and the limitless potential that is our birthright, and trauma at that birth caused by the medicalisation of natural processes that have made us believe that the world is a frightening and lonely place, and it's clear that we are sick, not 'mad' — and we never were.

We should not have had to 'behave' to get the love necessary for healthy development. We should have been made to feel welcome here as the unique and precious expressions of consciousness that we are; our needs met as they were in the womb, without having to cry out in pain and confusion when that prenatal promise was not fulfilled. (Even with the best will in the world the vast majority of us missed out on the crucial 'in-arms' phase thanks to the popular books on child-rearing of the day.) What a different, less destructive society ours might be had we been loved unconditionally by caregivers and educators. We had no option but to internalise these primal wounds as rejection and unworthiness, which all too often laid the foundation for our lives. We must fight to claw that innate self-love back, on long and painful healing journeys, mental, physical, emotional and spiritual. That's a lot of energy we could have spent just loving being alive. How on earth did this happen? Somewhere along the line we lost the connection to our mother — Gaia, and constructed a false and authoritarian figure in the form of a wrathful, patriarchal God, instead of understanding the source of all life and light in our world, our heavenly father — the Sun.

Of course, there were setbacks on my road to recovery — periods of deep anxiety and one terrifying spell of panic attacks. Again, my fear of medication sent me in search of a natural solution. I learnt all I could about stress and what it can do to the body and therefore how to avoid it, and if not avoid, then anticipate, manage and develop strategies for coping — strategies whose side effects are beneficial. I began to understand how my life events had affected me, and how conforming to society's so-called norms had repressed an enormous part of me while causing complex internal conflict. Unpicking your life is a long journey, but the rewards are off the scale. Healing hurts like hell, but not half as much as the hell of not healing hurts.

This interest in my health soon broadened into an interest in and concern for the broader environment. Or maybe it was the other way round. An interest in the environment and ecology eventually came together into a holistic view of myself as part of nature, subject to her laws. We can see all too clearly what a toxic environment does to an ecosystem, what long term damage can be inflicted, whether by misguided good intention or motivated by greed or profit. We don't know what we've got till it's gone. Whether that is sanity, health, or the wider world, we have to learn how to work with what we've got, with what we are, sustainably. In observ