Or, a brief(ish) history of my mental health, and how this relates to investing in mental health.
Today, October the tenth, is World Mental Health Day. The website there at the World Health Organisation says that the theme is “investing in mental health”. It says:
Financial and human resources allocated for mental health are inadequate especially in low resource countries. The majority of low- and middle-income countries spend less than 2% of their health budget on mental health.
Many countries have less than one mental health specialist per one million population. Even a considerable part of the limited resources is spent on large mental hospitals and not for services delivered through community and primary health care.
We need to increase investment for mental health and to shift the available resources towards more effective and more humanitarian forms of services.
Investing in mental health is so, so important – and yet so, so overlooked. Obviously my only first-hand experience of investment in mental health is here in the United Kingdom, which ostensibly invests much in mental health. We have free healthcare, affordable prescriptions (which are also free for a large minority of the population), policies in place in employment law which protect people with mental health problems. On the surface, we have it all right.
Except. Except where we don’t. I’ve been both lucky and unlucky with my experiences of the mental health services available to me here in Portsmouth. I’m going to tell you the story of my mental health. It starts back at the age of five or six according to my incredibly astute and perceptive mother, but really the story starts when I was about sixteen or seventeen, after a couple of suicide attempts, a rape, a sexual assault, self-harm and more mental distress than any teenager should have to deal with.
My first experiences were, as with most people, with general practitioners, back when it was thought that I had depression. They were, not to put too fine a point on it, about as much use as a chocolate tea pot. I had SSRI after SSRI thrown at me, despite my prolific self-harm and suicide attempts. A little later, after I had my son, I was given Cognitive Behavioural Therapy, a course of a mere ten weeks, which I did not find useful – probably because I did not believe any good could be done in ten weeks.
Fast forward to early 2009, when I had finally been referred to a psychiatrist due to my increasingly bizarre behaviour, mood swings and thought patterns. I saw that psychiatrist, who told me there was nothing wrong with me and that even my ‘depression’ was in remission. I walked out of his office and back to my house where a few hours later I went quite catastrophically mental. An episode of self-harm, a large overdose and an overnight stay in the local hospital (while they tried to figure out if I was going to die) later, and I was sent home. With a leaflet, with the local crisis team’s number on it.
I was extraordinarily lucky to have had my ex-fiancé with me at the time. Without him I would have thrown that leaflet into the nearest receptacle on my way out of the hospital, continued to go mental, would probably be dead and if not I would certainly not have my son any more. Instead, he swung into action, making phone calls and getting everything sorted so that I would have some care from the crisis team (who, I later found out, one cannot simply call as the hospital had led me to believe. You have to be referred by a GP, which he arranged).
The crisis team were tremendous in their uselessness. Two people – always two different people – would come and sit in my living room for an hour a couple of times a week while I chattered on about random nothingness, not being accustomed to talking about my deepest and darkest thoughts with strangers. Then came a breakthrough in the form of one Dr Stroma MacFarlane, a psychiatrist who came to my house. I had printed off one of my LiveJournal entries to show her. I can’t talk to strangers about my feelings but I do talk to my LiveJournal about them, and this I felt was a way to show her how I was feeling without having to tell her.
She said there and then that it was one of the most honest accounts of living with Emotionally Unstable Personality Disorder that she had ever read. She asked if she could keep it to give to other mental health professionals who didn’t fully understand the illness, in fact. She listened to what I had to say and she gave me a name for my experiences. She took me off the antidepressant I had been on which dulled my emotions to the point of perpetual blankness, and put me on a new one – which didn’t end up working for me in the long run, but was a welcome change.
She also put it into place that I would join something called Day Treatment, which is basically where you go into the mental hospital every day for six weeks, to keep you out of trouble and in theory to teach you coping strategies, though unfortunately my experience of Day Treatment was that there was a lot of woo and not much in the way of actual help. During my time with Day Treatment I went mental once more, and ended up spending a few nights in the hospital. I was discharged by that same Dr MacFarlane, who felt I wasn’t ill enough to be an inpatient and would be better helped mentally by being at home with my son. I had spent that morning working out the logistics of hanging myself with the curtains in my hospital bedroom.
She did, however, start me on the antipsychotic that was the foundation for the rebuilding of my mental health. Gone were the periods of destructive mania, of flying into rages and destroying household objects, of snapping at my poor, innocent son for perceived indiscretions. Olanzapine gave me back my life, despite my initial misgivings about it based on what I had read on the internet.
A while later I was sent back to the psychiatrist who started it all. No apology for dismissing my descriptions of my distress and experiences the first time around and being the tipping point for my downward spiral, he was all business. The mania, excessive rage and aggression were gone, but I still had huge problems with the depression side of things. He did one good thing for me – he switched me from the ‘new’ antidepressant, which wasn’t really working, onto another one, escitalopram. Escitalopram is an SSRI, and I had had terrible experiences of those in the past. But by gods, this one worked. Almost from the first day, it worked. I don’t know whether it was psychosomatic or whether it really did kick in that quickly, but it was blessed, welcome relief.
He also referred me for therapy. The group was called the Emotional Coping Skills Group, run by Dr Lorraine Bell, and it was heavily Dialectical Behavioural Therapy (DBT) based. I self-sabotaged on that group. It was a twenty week course and I spent the first seventeen or eighteen weeks telling myself it was never going to work, that it was all a bunch of useless woo and generally not paying attention. Then, right at the end, I realised how useful it had been and how much I had learned. I credit that therapy group with much of my current ability to adequately deal with my faulty emotional responses to external stimuli.
I didn’t see that psychiatrist again. I was moved, once again, to a new place, the place I visit now. I saw a psychiatrist there with whom I had a fairly large personality clash. He seemed to be of the opinion, as so many are, that psychiatrists are gods and gatekeepers, and we patients should be quiet and do as we are told. I like to take my treatment into my own hands, so obviously there was a conflict of interests there. By this point I had managed to extract one set of mood swings from the other; I had the rapid, day-to-day cycles of the personality disorder, but there was a larger, more predictable set of moods that overlaid them. I was fairly certain that I was suffering, on top of the personality disorder, with bipolar disorder.
When I mentioned this to the new psychiatrist, he was immediately on the defensive. Patients do not diagnose themselves, or even come up with ideas. Those are the jobs of the doctor. He totally dismissed my concerns, stating that he would not diagnose bipolar because (and I paraphrase, but this was the jist of it) “if you’re bipolar then you can not stay on your current medications, I will have to switch you to Lamotrigine, and then you will get Stevens-Johnson Syndrome (warning for photo in link) and then you will die.” He would hear no more of it.
Of course, by this point I had been around the houses a bit and knew I was entitled to a second opinion, which I requested. To his credit, he took my request professionally rather than personally, made the referral that day, and several weeks later I was sitting in the same building with Dr Kevin Ostler, the consultant psychiatrist at that facility. One or two sessions later, he stated that I was most certainly bipolar alongside the personality disorder, and that my medication cocktail shouldn’t be working but it quite clearly was, so I was to stay on those medications (though we did play with the dosages quite a lot over time).
Then, on top of it all, I developed an eating disorder which rapidly escalated as I detailed here. Dr Ostler took me seriously once again, and told me that as soon as I was ready for treatment, he would make the referral. A month or two later, when my ex-fiancé left me – in part because of my mental health issues, my eating disorder and my physical disability – I realised that I had to take control of this as I had done with my other mental health problems. So I phoned his office, and after a moderate waiting period, I was once again in his office. He referred me to the Bluebell Rooms, which is the Portsmouth Eating Disorders Service – run by the same Dr Lorraine Bell whom had orchestrated that therapy group I found so useless and then so useful.
I saw Lorraine, who diagnosed EDNOS (eating disorder not otherwise specified). Then I saw a psychologist called Sheila, and I was put in another group therapy called the Intensive Support Programme. I go in for five hours a day, twice a week (it should be three times a week but one of the days clashed with my voluntary job). I eat, with a group and the psychologists, breakfast, snack and lunch, and participate in group therapy-style sessions where we talk and learn about relationships with food and the psychology behind disordered eating. I have only been in the group for a few weeks but I feel like it’s already helping me immensely – I think it’s just what I need to stop this before I become dangerously underweight or even more unhealthy than I have already become.
So that’s where I am right now. Nearly ten years in the mental health system, some of it good, some of it bad. The emotionally unstable personality disorder and bipolar disorder still affect me, of course – sometimes quite intensely – but with my medication and the things I learned in therapy they are mostly contained. While I am nowhere near being cured of EDNOS, I am well on the way to being in recovery. Without the National Health Service, none of these things would be true. I live on benefits, I get my prescriptions free. The therapy sessions I have attended have all been free of charge. In my darkest times, when I made attempts on my life, my loved ones never had to worry about whether I (or they) would be able to afford the subsequent hospital stays and following care.
And yet. And yet. There were so many failings in this system.
- The doctors who failed, despite my mother taking me to see them multiple times, to accept that anything was wrong with me – both when I was a young child and when I was a teenager.
- All the A&E psychiatrists who put my attempts on my life down to my age and attention seeking, rather than looking for the underlying problem – over and over and over again.
- The psychiatrist who told me “I’m not going to prison for you” when I was sixteen and had overdosed and wasn’t sure if I’d do it again.
- The fact that for so long I had antidepressants and nothing else thrown at me, almost certainly due to a lack of funds.
- The piss-poor attempt at ‘therapy’ through CBT, which was woefully inadequate both in method and in length, but which I have been told is one of the cheapest treatments available.
- The psychiatrist who utterly failed to listen to me when I outlined my incredibly distressing experiences, and told me there was nothing wrong with me.
- The hospital staff who let me leave, after a major suicide attempt while my young son slept upstairs, with nothing more than a phone number as aftercare support.
- The crisis team ‘support worker’ who told me, to my face (and with my ex-fiancé present), “I won’t lose any sleep if you kill yourself.”
- The crisis team ‘support worker’ (a different one) who, over the telephone, told me to “just take [my] tablets and go to bed” when I called in extreme distress planning to jump off a motorway bridge. If I could have just taken my tablets and gone to bed – surely I wouldn’t have been calling the crisis team?
- The Day Treatment programme where very little actually happened, apart from arts and crafts and other fairly useless things.
- The psychiatric ward on which nothing happened, where patients were left to stagnate with nothing to think about other than when was the next time we’d be let out for a cigarette. I did not eat a single bite the whole time I was there (I did not have EDNOS at the time). Nobody noticed.
- The psychiatrist who sent me home from a psychiatric hospital without enquiring as to my mental state to find out if I was fit to leave.
- The psychiatrist who failed to listen to my concerns about my mental health and dismissed my concerns because he didn’t like me researching my own mental health and treatment options.
That list could go on and on, but those are the major points. I have, over the years, had some wonderful experiences with mental health services. Dr MacFarlane I credit as being the woman who saved me, who took me seriously and, despite her later failing, set me on the road to recovery. The Emotional Coping Skills Group turned out to be really useful and I still use the techniques I learned there to deal with my life today. Dr Ostler is honestly the best psychiatrist I could hope to have; he listens to me and takes me seriously and puts my treatment in my own hands. The Intensive Support Programme (for the EDNOS), so far, seems to be useful and a great learning environment.
Sometimes I am angry, I am so angry, for the person I was. For that little girl who had no idea what was happening to her. For that teenager raging, terrified of her own thoughts, the visions, the auditory hallucinations that were dismissed as hormonal. I am angry for her, because it was not her fault that she was mental, it was not her parents’ fault, it was nobody’s fault, it just happened. It just happens. It happens to people of any age, of any background, sometimes for a reason and sometimes for no reason at all. And through my anger I recognise… I had it easy.
I take a moment out to think about my brothers and sisters in distress, who have died – who are dying – because of inadequate mental health care, because of inadequate understanding of mental health professionals, because of inadequate funding for medications and therapies and hospital stays and everything else they needed. I could so easily be one of them, and that terrifies me. It terrifies me that people are living in the sort of distress that means they see no way other than suicide, and it could so easily be prevented, and yet it continues at such an alarming rate that it should be on the front of every newspaper in the country.
But all those things that went wrong – for me, for all the other people suffering mental distress in this country and the world at large – they could be changed. If we invested – time, money, effort – into better training, more nurses, more doctors, more time, more public campaigns detailing mental illness and its effects and just getting it out there that help is available, that you don’t have to suffer alone. I was lucky; I’ve come out of it, if not well, then coping. I’ve come out of it alive. I can’t stress enough how easily I could be dead right now. But I was lucky to get the right help, eventually, the right medication, the right therapies, the right support, the right people. But I had to go through so much shit to get here. Many people have to go through so, so much more. Many people don’t make it.
Investment in mental health doesn’t just mean financial. It means full, societal change. It means education, not just of the general public but of the very professionals who are supposed to help us. It means movement, revolution. I don’t know how to bring about that revolution, but I know it’s needed. Not for me, but for all those people, adults, the elderly, teenagers, children, who are so close to death and desperately need to be pulled back from the edge.
If you’ve made it all the way through this, I commend you. It has taken me a lot of psychological and physical pain to write this, all three thousand-odd words of it. I would really appreciate discussion of the issues raised here, if you have the mental and/or physical energy. This is a topic so important to me, and I hope it’s important to you too. ‘Happy’ World Mental Health Day. I wish you, all of you, suffering with mental illness or not, peace and mental wellness for as much as is possible.
What you've been saying...