Contributed by Jo Twist
I was given a diagnosis of paranoid schizophrenia nearly twenty years ago. Although this was initially a relief, it gradually became a problem in itself. The diagnosis serves to explain to yourself, family and friends why you have been behaving like this for so long, in my case for the last four years.
At first the medical model seems to offer some hope. It gives you a reason for your symptoms, that is ‘hearing voices’ and extreme depression, and offers the solution of medication. And my life couldn’t get any worse. I’d dropped out of university. I’d lost touch with family and friends. I’d just been left by my girl-friend. I had no money and was homeless. And I’d just made a serious suicide attempt.
Slowly nothing happened. Although I found a house, benefits and support from Network for Change, a local group, I assumed I’d messed up my life irrevocably. The meds helped to some extent and I gradually began to recover, becoming less anxious and more sociable and started writing again. But I couldn’t get on with anything. I believed I was mad, that I was biologically flawed. I had no life and no hope.
Medication in itself can become a problem. They all stop working after a while, and this and the change over to a new drug is difficult. After trying a number of different meds, I was put on clozaril, nearly fifteen years ago. As are all anti psychotics, neuroleptics, major tranquilisers or what ever you want to call them, this is a very strong and potentially dangerous drug. I experienced a lot of side effects. Beginning with weight gain, drooling and over sleeping thru to lack of facial expression thru to retrograde ejaculation and full blown epilepsy. I now have to take another medication to control the seizures caused by the first. I also had to have regular blood tests to check on potentially fatal immune system failure. But I did eventually get off it, although it took a three year battle with my psychiatrist.
A while back I made a film called ‘There’s a Fault in Reality’ with Tom Cotton. It’s about my experiences as a mentalist and two other peoples experiences. I became friends with Tom and he encouraged me to try therapy, as did Rai Waddingham. We took the film to the Hearing Voices Congress and I became more involved with the Survivors Movement. But it didn’t seem relevant to me. Other peoples’ stories didn’t seem to tally with mine. The whole idea of hearing voices’ didn’t seem to match my experiences. I couldn’t see any way out of the problems confronting me. I’d given up on myself. As I was told to do.
Last year I became very depressed. Problems caused by the clozaril, the end of a relationship, sexual anxieties and increasing despair over my future and the future of the world led me to attempt suicide again. It was an incredibly low point. I felt I had no future.
But the only way was up. I came off the clozaril and went on to a new med which is treating me well. I read in ‘Living with Voices’ the simple statement that recovery and happiness is possible. I believed it. I learned to relax a little which helped the severity of my ‘bad thoughts’ – thinking that I’m stupid, clumsy, ugly and worthless. I started Personal Construct Therapy with a good therapist. I began to talk about the experiences that I believe caused my psychosis, that is being bullied and despised at school and my mother and grandfather dying when I was seventeen. Even though I had rationalised this it took talking about them to take away some of the power it had over me.
I stopped believing in the medical model. I’m not paranoid and I’m not schizophrenic. The traumas that have happened in my life triggered a breakdown. As I learnt more about dissociation I realised it describes better what I experience. I have different people inside me who make me think in their ways or remember them. Maybe I have a tendency towards being unhappy but that is understandable.
I enjoy my life now. I’m creating – music, art and writing – more and I think better than ever. My ‘voices’ and ‘bad thoughts’ have almost gone. I’m loving my friends. And I have plans for the future, including continuing education.
The key to recovery is to talk. The medical model will persist in suppressing the underlying problems that triggered symptoms in the first place, and will continue to haunt us. You can only get rid of them by talking them out, in therapy and to friends and family. Writing it all down so you can step back and look at it for what it is, maybe find a different way of seeing it, can also help.
Now I see myself as a mentalist, as someone who experiences dissociation and a survivor of the medical model. I believe I have a chance at happiness, peace of mind and a productive life and I am prepared to fight for it.
‘The messages I hear’
They can fit exactly in my ears
Like a plug: ‘Jon, Jon, wake up!’
Or they can come like waves
Over worn rock, the dull chatter
Of long gone children
Or they can come stupidly
Like the mutterings of an idiot child
Or they can be left in my mind
By godanddevil, to be known
Or they can come off the page
Like an underlined phrase
Or they can be heard in songs
Like all the voices I’ve ever heard
Are singing backing vocals
And they’re all lies
And they’re all true
‘Chopping the onions’ (WSWY)
Once, when my mother was cooking
I offered to chop the onions
‘No’, she said, ‘I’ll do it.
I want to cry.’
I remember her standing proudly in her kitchen
Chopping the onions, wanting to cry
Read more from Jo, See: www.flickeringpictureshypnotise.wordpress.com
5 responses to “Surviving Diagnosis”
Hello Jo, my name is kent and i most certainly do hear voices voices, not just the impression of such as you seem to be implying. just one thing for you Jo. what’s dissociation? i guess i can look it up, and will probably do that so i know exactly what your talking about. I, as an individual, have been absolutely traumatized by the psychiatric community and am shocked and appalled to find out that their primary view of treatment is based on medication, and offer little in the way of education or even helping to develop the skills to cope. A lot of stuff, I realized almost immediately, I would have to figure out on my own. Though i dont suffer from the same thing you do, i appreciate reading your point of view. God bless you.
My name is Kent, and I hear voices.
It’s really good to read about your experience Jo and read your poetry and I’m so glad you are finally coming out of the darkness and finding hope and good things in your life again.
I have been through similar experiences myself and I understand the struggle, the pain and the nightmare of it all.
You are so right when you say that talking is really the only way to deal with it in the end. I found talking to be so hard but it really is the only way.
Happy days ahead,
Thank-you for this post.
You make perfect sense. I think that talking is probably the answer.
I spent many years NOT talking, going through psychosis.
I think talking it out of the system probably is the right course.
Thanks for your post.
My sons is 33. He’s been hearing voices for a long time. He talks quietly to someone and often what I hear is
The problem is he won’t ‘Engage’ at all with anyone and ends up in prison continuously
For not adhering to his probation rules. I think he hears voices instructing him to do otherwise. This had let to him now homeless and currently on my floor, with police needing him for missing probation and he’s not allowed at my address too. You can see the position im in and i don’t know what to do next.
Flinging him a category A prison on a Magistrates decision on the day after not looking at his real state of mind is pushing him towards a very sad ending.
What would have happened to you if you didn’t listen and engage?
Whilst Jo isn’t checking these comments, he just contributed the article for our site, I was wondering if you’ve heard of the Voices Unlocked project. It’s a project that is setting up support for people who hear voices who end up in prison, secure units or immigration removal centres. I’m wondering if this is something that may be of interest to you and your son. Not wanting to ‘engage’ with people can be seen as a really negative thing, and is often extremely distressing for friends and family members, but I’m also wondering whether there’s a reason he doesn’t want to talk with professionals/workers. We meet people, in our work, who are willing to talk with someone if they feel that they are going to be understood and heard. Obviously, everyone’s different – but I hope that you both find some light and someone your son feels is worth talking with to help him find his way through what sounds like a really difficult time. See: Voices Unlocked