How were you diagnosed with schizophrenia disorder?
The way I found out I had the diagnosis was quite by chance. There was a file with my name in my father’s house and there was a letter from a psychiatrist to him saying I had schizophrenia.
I got symptoms of paranoia at lectures and seminars at Reading University maybe four years before I was first admitted to hospital. I had every reason to feel uncomfortable at lectures as I had not done the required background reading and hadn’t the faintest clue what the lecturer was talking about, but on top of that guilt, I thought everyone knew I was a miscreant and was looking at me. This feeling was due to smoking cannabis.
In later years I further developed severe delusions, especially when I was homeless for five years. These delusions concerned the end of the Cold War, which I thought would bring the Russians to us; ideas that Morse code signalling was going on; that traffic knew where I was and was following me, and other delusions. By this time I had been cannabis-free for a number of years, but I was already severely damaged.
I’ve never really been diagnosed around these delusions, I think it was probably my unusual behaviour as a result that led the psychiatrists to diagnose me. And then when I had another episode they would refer to my record and again treat me as a schizophrenic as the records said.
I never discussed this with any staff on the wards – those discussions simply didn’t happen. In recent years, with the community of service users we have had since 1990 as well as essential fact sheets from Rethink and elsewhere, I can recognise my symptoms.
With that helpful information, I find it useful to recognise the description of schizophrenia, as it fits my circumstances. It is helpful to get antipsychotic medication. Delusory thoughts have invariably led to disaster – failed degree, unemployment, homelessness, destitution. I would not wish to repeat that. It is not however useful to be described as a schizophrenic if it gets you put away some place for a long time, as used to happen within living memory.
At what age were you diagnosed and how did you cope?
The diagnosis must have been when I was 24 but I only found out later. Looking back I can recognise symptoms like paranoia from when I smoked cannabis as a student. In recent years with user involvement, putting the patient at the centre of service delivery and other helpful initiatives, I am able to be familiar with what schizophrenia means.
What have you been told about your prognosis?
Currently my psychiatrist tells me I can work into my 70s as others do. That is helpful. I am 66.
What treatment have you had?
In the beginning I was put on injections which were humiliating and caused side effects called akathisia. This caused me in turn to escape supervision to have the injections. Since my last admission 25 years ago I have had medication by tablet with which I comply. I am now on atypical antipsychotics which I take every day. I have counselling once a week, which I pay for with my Personal Independence Payment (PIP).
Can you describe the symptoms you experience, and whether they have a significant impact on your daily life?
Do I hear Voyces? That’s my name! No, I have delusions such as the belief that the traffic is deliberately following me around, when I am not well. I also think there is signalling going on and a whole heap of unhelpful things.
What do you find the most difficult aspect of the condition?
The medication means I am a bit tired in the evenings and don’t jump out of bed the next day with the joys of spring. But at least I don’t think the Russians are coming.
Have you personally encountered any social stigma or discrimination related to your diagnosis?
Recently my girlfriend has been in a psychiatric unit for a long time, and I had a operation. Neither of us were included in the church prayer list despite 20 people being prayed for for over a year, most of whom don’t go to church.
Are you happy with the NHS care you have received – could any aspect have been improved?
NHS care is for me now largely benign although 20 years in and out of the old asylums kind of wrecked a lot of things for me.
Do you think the support on offer to patients with mental health conditions is adequate?
Clearly there are a lot of things that could be better in the way mental health care is delivered but maybe the main thing is we just don’t know enough about mental illness.
What message would you give patients newly diagnosed with the disorder?
I would say it’s really difficult, but it’s so helpful to have your version of who you are, not someone else’s version.
What is your greatest hope/fear for the future?
I am just about financially independent on a low income and would like to have better earnings and to own my home.
For more information on schizophrenia, visit rethink.org
