I have a bunch of health conditions and disabilities. I always joke that I misunderstood the rules and kept going to the back of the queue when they were handing out these things! One of the things I collected in the figurative queue was a diagnosis of schizophrenia. It has been part of my life since 1995, when I was 21. I have taken some pretty heavy-duty medication since then and experienced some pretty terrifying things.
Schizophrenia is basically a mental health condition which involves psychosis and delusional thinking. Sadly, psychosis is a term which is misused all the time. It is used interchangeably with violent. Statistics show that people with schizophrenia are more likely to be victims of violence than perpetrators. When people with schizophrenia are violent it is usually because they are not on treatment and they are terrified and think people are going to hurt them. It does happen but generally we are more likely to be victims than perpetrators.
Psychosis does not mean violent. It essentially means you lose touch with reality. It is like being in a waking nightmare. For me it is all about the supernatural. I think I am dead and in purgatory, that God is punishing me and that there are ghosts and demons that want to hurt me. It is awful and completely terrifying. I also get hallucinations. I still get some psychotic and delusional symptoms when I am mostly well. For years I wouldn’t look in the mirror at night because there were ghosts there. I was not psychotic, but I had what is known as break through symptoms. I didn’t even realise this at the time and believed what I now know to be not very coherent thinking! My ability to address these unhelpful – and scary – beliefs was that I am now on the ultimate, last line of defence anti-psychotic medication which is called Clozapine. It is not something to take lightly as it comes with four potentially life-threatening side effects meaning I have to get blood tests eve month and heart scans every six months! However, the impact of this medication has been life changing. My mental health is better than it has been since I first experienced psychosis in 1995.
One thing people say about schizophrenia is that it is a split personality. It is not that at all. I am all Yenn! There is just the one of me – probably for the best! This misconception means some people describe a situation where there are two competing elements as being ‘schizophrenic’. This pisses me off immensely and I always correct people who say this!
There are different sorts of schizophrenia, and like autism it is not a one size fits all. Some people have one episode of illness and then never have another one. Some people – like me – are able to manage life pretty well with medication and have episodes of psychosis which resolve, and some people are unwell all the time.
I am ‘lucky’ to be atypical in how my schizophrenia presents, possibly because I am autistic. I have seen so many psychiatrists over the years. They all eventually come to the conclusion that I have schizophrenia but that it isn’t the usual sort – whatever that might be. One thing nobody wants to hear from a doctor is ‘ooh, I never saw that before!’ It has taken me a while to understand my illness and to accept that I have it. One of the symptoms of schizophrenia is to be in denial that you have it. I think this is a wonderful irony – my denial of my schizophrenia actually confirms that I have it!
These days I know I have an illness and that I need to take meds and to be good to myself and avoid anxiety. Prolonged high levels of anxiety can trigger psychosis for me which is problematic in that I get anxious about being anxious! I think I have reconciled myself to the illness. It is part of me, and I am proud of how I manage my life given that I take some pretty significant meds and have an illness that apparently wants me to be unable to do much at all. I am highly accomplished for anyone but for a person with a mental illness that has threatened to end my capability to work on many occasions I think I am doing pretty well.
I was in a residential mental health service a while back and there was this young and very vulnerable woman who had just been diagnosed with schizophrenia. This young woman looked up to me as a bit of a mentor. One day she asked me what schizophrenia meant in terms of her future. I said ‘It doesn’t really have to mean anything. People will tell you what you can’t do but they may well be completely wrong.’ I don’t know what path that young woman took but I hope it was affirming and positive and that – like me – she challenged all the unhelpful stereotypes and lived well.








