Tuesday, 11 December 2012

From psychiatric patient to human being: My journey in a nutshell.

Two years ago I began the search to find who I was beneath all the labels and major tranquilisers. I was a revolving door psychiatric patient with a severe mental illness. Well, that's what the system told me and I was fitting into that role well.

At nineteen I became overwhelmed by my experiences and went to see my GP. My GP referred me to a psychiatrist and the psychiatrist admitted me to hospital. I spent the next five years going in and out of hospital like a yoyo, labelled as severely mentally ill and had a regular prescription for a large coctail of major tranquilisers.

I was constantly being bombarded by terrifying voices. I believed they were all powerful entities that were always right. One of the voices I heard claimed he was the devil, another threw lewed insults at me such as whore and told me he could kill anyone he wanted if I didnt do what he said, another controlled what I ate and berrated me with insults about my appearance.

I fitted the voices I heard into my elaborate theories on life that to everyone around me, sounded like nothing more than the mad babblings of insanity. Theories of parallel universes, evil spirits, government conspiracies and special communications with the underworld and satan himself.

I was regularly being sectioned by the local police force for attempting to jump from motorway bridges and oncoming intercity trains. I often felt I needed to tell the world how doomed they all were, or announce I was 'onto them' and that usually ended in the back of a police car or ambulance on my way to a&e to be assessed by the mental health team.

I was labelled with all sorts: Eating disorder not otherwise specified, major depressive disorder, boderline personality disorder, schizoaffective disorder and eventually schizophrenia...that was the one that knocked the stuffing out of me completely. What was the point in fighting if I was going to be suffering from a lifelong brain disease forever? When I went to see the psychiatrist four years previously, I was under the impression that I would start some intensive therapy where I would be able to talk, uninhibited, about my darkest secrets to a non judgemental therapist before re-emerging as a young woman who loved herself, was aware of where and who she was and very clear on where she was going. I was not expecting to be told that this suffering would continue till the day I died and the best I could hope for was a sort of dampenning down of my experiences (which were now called symptoms) with the correct balance of medication.

I was prescribed antidepressants, mood stabilisers, benzodiazepines and neuroleptic after neuroleptic. Each one brought the empty promise of getting rid of my voices and making me happy forever...like I was always supposed to be. But when one didn't work my psychiatrist tried another and another and then I was blinded with science as to how one drug can compliment the other and so then he started adding drugs and not taking any away. After trying plenty of neuroleptics at the maximum dosages (one was even put even higher) I was being labelled as treatment resistant.

Things were getting desperate. I wasn't feeling any better.  I was actually feeling worse and my voices had become louder and more distressing than ever. I was becoming more and more convinced that I was living in hell, being personally tortured by satan and that I needed to kill myself to cross over to the 'real world'.

Then I was prescribed Clozapine. I was told this was the gold standard...and once again it was promised to me that it would get rid of the voices. With every blood test (on clozapine your white blood cell count must be monitired regularly as it can cause a fatal decrease in white blood cells) I became more convinced they were performing special genetic tests so that they could find the best way to control or kill me.  Getting bloods from me was becoming more and more of a challenge.

I was now taking five different medications every night before bed. I entered hospital at 19 years of age, 5ft 8" and 8stone 7 lbs. I now weighed 16 stone 7lbs (clinically obese). I used to enjoy running but now walking up a flight of stairs was exhausting. In fact, being awake was exhausting. I was so sedated that I would sleep at any opportunity I could (I even fell asleep at the dinner table a couple of times). I became incontinent; unable to sleep through the night without wetting the bed (and I didnt even realise until the morning because I was in such a comatosed sleep). I then began wetting myself at work and so had to quit because I wasn't prepared to wear nappies.

One of my voices began to shout at me that if I didn't stop taking my medication he would kill everyone I loved. Not only did I believe that he could kill people wholeheartedly, I didn't want to take these pills that seemed nothing more than poisons (do you blame me?). So I attempted on a number of occassions to stop taking my meds but because I always stopped suddenly it never went well. The first 24/48 hours were always incredible...a sudden burst of energy and a much greater clarity of thought but by the third day, the clarity of thought became too loud, as did the voices and all the beliefs that surrounded them. Then there were the physical withdrawal effects that, quite frankly, were horrific. I would always end up back in hospital where I had to resume taking the pills again or face the prospect of forced 'treatment.' More often than not I was so overwhelmed with the physical withdrawals anyway that I almost WANTED to resume the medication again.

Getting me to 'comply' with my treatment was becoming more and more problematic for everyone around me. I spent the majority of the time I had with mental health workers battling about the medication and trying to find some kind of loophole that meant I could stop my medication without being sectioned.

During the five years I spent as a patient, I attempted on a couple of occassions to start talking about the sexual abuse I experienced as a child. I desperately wanted to talk about it and I knew it was necessary. But i was only discouraged from talking about such things. It was always brushed off in the same way my MI5 theories were brushed off. "The problem with talking about those things is that it will make your symptoms worse" I was told by one therapist before I was ushered back onto the topic of finding an alternative thought to "Everyone is an evil spirit that works for the devil who speaks directly to me." I was more than willing to talk about the reasons behind why I had such deep set beliefs (even though I wasn't fully aware the abuse was the root of my problems I did have a certain amount of instinct that talking about this stuff would be incredibly beneficial) but it was ACTIVELY swept under the metaphorical carpet.

Eventually my parents came across a documentary called 'The Doctor Who Hears Voices.' This programme was aired on channel 4 and it followed Dr. Rufus May, a clinical psychylogist, and a junior doctor who heard voices. Rufus had been diagnosed with schizophrenia at 19 years old and was told he would have to take medication for the rest of his life. He eventually decided to ignore this, come off the medication and train as a clinical psychologist in an attempt to change how the system saw and supported individuals who experienced things that would be labelled as schizophrenic.

The film showed how he helped Ruth, the junior doctor who heard voices, to see her experiences as meaningful in the context of her life; experiences that held great lessons and messages. They both did this work without the use of psychiatric drugs and by the end of the film Ruth was able to return back to work able to manage her experiences well.

This film was the catalyst for a series of events that eventually led to me getting help from Dr. Rufus May himself.

Even from the very first session I had with Rufus I felt a huge sense of relief. My 'symptoms' became experiences again and rather than discouraging me to talk/engage/entertain them, he actively encoraged this. He wanted to get to know the voices I was hearing using voice dialogue. Just a space to talk in detail about every quality of my voice hearing experience to someone that wanted to listen was enough to shift things. Rather than telling me that the beliefs I had were delusions that I should stop believing he asked all about my beliefs. He focussed on how these beliefs made me feel and how I could live whole heartedly within these beliefs. There was never a point were I was told what I experienced was wrong, illogical or meaningless and there was CERTAINLY no agenda to get rid of my experiences, rather, the aim was to get to know them.

I began reducing my medication slowly, with the support of my psychiatrist and family. Most of my meetings with Rufus took place whilst walking in the countryside. I learned mindfulness techniques, engaged in dramatic role play, took up boxing, learned of approaches such as Emotional Freedom Technique, engaged in visualiastion exercises, breathing exercises, ceative game playing and put lots of emphasis on an activity I already enjoyed thoroughly and engaged in regularly...writing.

Through writing I was able to begin sharing with Rufus the sexual abuse I experienced as a child and young adult. He helped me to understand what had happened and understand and express how I felt about it. I had to begin to try and find myself not guilty and give the shame I felt back to its rightful owner...the abusers. When I started to express the rage, shame, fear and deep sadness I had bottled up, my voices began to calm down and give me an easier time.

I also began attending a self help hearing voices group where I met others who could hear voices too. Here we shared with eachother our experiences and exchanged coping techniques. We had bizarre conversations that, in any NHS setting might lead to a mass sectioning! I was introduced to others who accepted my experiences as part of who I am and not part of a medical illness. I started attending a monthly public meeting on holistic approaches to emotional wellbeing where I connected with even more wonderful people who believed they were more than a walking set of diagnostic criteria.

I didn't believe I was a psychiatric patient with a lifelong brain disease anymore, but an overcomer of childhood sexual abuse, an activist for change in the current system that is based on an outdated medical model.

Rufus provided opportunities for me to tell my story at workshops, conferences and training events. Having people bear witness to my story, and learn from it or be inspired by it has been a very important part of my journey to self discovery. It helps me to feel I am making a difference...that I actually exist and am worth alot more than being written off as mad bad and dangerous.

I see the voices I hear as parts of myself that hold the strong emotions it didn't feel safe enough to feel. They are parts of me that without, I would not have survived. To see them as a symptom of a mental illness is insulting and failing to acknowledge their pivitol role in my survival as a human being. I want to thank them, not get rid of them!

Now, the voices are great friends and advisors. I would never want to get rid of them. I no longer identify with my previous role as a severely mentally ill psychiatric patient but a human being that is experiencing and surviving life in my own unique way...just like every other human being on this planet. I am co-authoring a book with Rufus and am currently studying psychology at university. I am medication free and no longer access the mental health services. I still have therapy where I continue to work on my experiences of abuse but these days I am generally a happy soul that has found a life worth living. I want to help others find the same and help spread how this can be possible.

2 comments:

  1. What an amazing story...I wish I had had this opportunity at your age. I am 60 now and have been considered CMI with schizophrenia for decades. I too have been in many hospitals, and have been badly abused there to boot...But although I still take multiple meds, I will say that I function very very well now, perhaps in spite of them. In fact, I do better now on the two antipsychotics I take than I ever have in my life, creating professional level art and writing on a steady and regular basis. But I hate taking anything, and wish I dared stop. I am simply fearful that I would not be as productive OFF the pills as I am on them. Thank you so much for telling your story. It is so uplifting I will share it with others if you do not mind.

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  2. I have heard about this new approach to "hearing voices," but your story really highlights the many flaws in how we view mental health. I am so thrilled that you have such a good life now, and I'm sure you are helping so many by sharing your story. My son suffered from severe OCD and was on various combinations of ten different meds. Only when we finally insisted he be weaned off everything did his life improve dramatically. It is so important to share our stories. Thank you. For some reason I'm not able to post with my wordpress name: Janet Singer at www.ocdtalk.wordpress.com

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