I was asked to be a mental health month ambassador the other day and it got me thinking about my mental illness and why I am out loud and proud about it and what needs to be done to better include people with schizophrenia in the world.
I have had a diagnosis of schizophrenia since 1995 when my extreme use of illicit drugs and being homeless set up a perfect storm for psychosis. The universe was broken and I didn’t know who I was. It was very dangerous and I am fortunate to still be alive after that – and many other – psychotic episodes. I never thought I had schizophrenia despite every competent psychiatrist I spoke with confirming the diagnosis. I thought people with schizophrenia looked like zombies from the medication and that they couldn’t keep a friendship or a job. Of course these descriptors applied to me at various points in my journey but objectivity about oneself can be difficult.
My schizophrenia is what is termed ‘atypical’ resulting in lots of related but slightly different diagnoses over the years – psychotic depression, schizoaffective disorder and atypical schizophrenia. Currently my official diagnosis is schizoaffective disorder which basically means I have a combination of a psychotic illness and a mood disorder (usually depression but sometimes mania). I have spent years in hospital and residential services – about seven years last time I checked. Hospital is one of my least favourite places. There is usually a massive power imbalance between patients and staff and not always much understanding of the rights or patients.
I have taken antipsychotic medication continuously since 1995. The medication had side effects such as weight gain and sedation which can make life hard. A lot of people see someone who is big and think they are lazy or that they have let themselves go. I always think maybe they are on antipsychotic medication. It seems unfair that those looking after their mental health can be judged as being lazy or careless about their health! My schizophrenia has an additional label: Along with it being atypical it is also treatment resistant. This means that the medication doesn’t always work very effectively. I am now on medication called Clozapine which is only prescribed for treatment resistant schizophrenia. This medication has been an amazing positive in my life. When it was first prescribed I would look at the pills in may hand and say ‘please be my good friends little Clozapines’. And in fact Clozapine has been a very good friend. Everyone who knows me well says they have seen a big difference since I started taking Clozapine in 2020.
Having schizophrenia can be a challenge for reasons in addition to the actual illness. The stigma around schizophrenia – and psychosis generally – is immense. If you say the term ‘psychotic’, many people think it is interchangeable for ‘violent’ or ‘dangerous.’ It actually isn’t that at all. Psychosis is when reality changes. You might see or hear things that others can’t or believe strange things. You might be frightened that people are trying to hurt you or that the TV is telling you things. I always say my psychosis is like a waking nightmare. People with schizophrenia are usually not violent and if we are it is because we are terrified. Research has found that people with schizophrenia who are violent are usually not taking medication – either because they stopped taking it or because it is their first episode and they don’t know they need to take medication. I am not likely to be violent when I am unwell but I am likely to be terrified. We need to stop saying ‘psychotic’ when we mean violent or predatory. It isn’t helping anyone.
Representation is another issue in this space. How many famous autistic people do you know? Probably quite a few. From Hannah Gadsby to Alan Turing and many, many others, the work of famous autistic people is increasingly known. This is awesome and all power to autistic celebrities. Now can you name any schizophrenic celebrities or role models? All I can think of – and bearing in mind that I am a mental health advocate so likely to know more then most – is John Nash of ‘A Beautiful Mind’ renown, poet Sandy Jeffs, author Janet Frame, the lead singer of The Sunny-boys (who stopped performing after he was diagnosed) and me (and I am a pretty minor celebrity so unsure I even belong on this list!) There is that wonderful adage ‘if you can’t see it you can’t be it.’ In the autism community there are plenty of role models that people can look to and learn from. In the schizophrenia space there are very few and most of the messaging is negative. We need more representation in the wider world and messaging that people with schizophrenia are doing positive things and that we can live a good life with the illness given the right treatment and support.
The world of work is quite fraught for people with schizophrenia and psychotic illnesses. I saw research from a few years ago which showed that in Australia the labour force participation rate for people with psychotic illness was 18 per ent. 18 per cent! I have had a number of colleagues in my workplace whisper to me in a corridor ‘i have schizophrenia but don’t tell anyone…’ Something really needs to be done in this area. I have been employed in a full-time professional job since 2007. I have needed to take extended leave and graduated returns to work on several occasions due to my illness but my employer has always been supportive. In return to keeping me in work my employer is rewarded with my loyalty and dedication and good work. I am currently supervising a staff member and I am highly regarded at work. A lot of people with schizophrenia who are not in work could be to my mind, given the right support in the workplace.
People don’t say they have schizophrenia a lot of the time due to (very understandable) fears or being discriminated against and misunderstood. This needs to stop. I don’t want to be the only person who is ‘out’. Of course I don’t mind being ‘out’ but I want other people to feel able to be out and not feel ashamed of their illness or worry that they will be discriminated against, We need more understanding and education in this area. We need a different narrative about schizophrenia in popular culture and we need a sense of pride in who we are. We need a world that views schizophrenia differently and enables us to engage in the world and to be genuinely included and respected for who we are.
Drawing by Yennski when in hospital in 2019