S is for… schizophrenia 

CW: mental illness 

I am 48 years old. I was diagnosed with schizophrenia in 1995 and have spent ten years of my life – over 20% or my time on this planet – in institutions of one sort or another. I have taken heavy duty medication for over 25 years. While I see my autism and ADHD as important parts of what makes me Yenn and I sometimes view them as friends, schizophrenia – for me at least – is often viewed as my worst enemy. I sometimes imagine my illness as being like someone who hates me and wants to see me suffer and fail. I would not wish my illness on anyone and if there was a cure for it I would take it and then take it again, just in case it didn’t work the first time!

I have learned to live with my illness – for much of the time. How it manifests for me is that I have episodes of mood issues and psychosis, usually treated with hospital stays and changing medication. It takes a lot out of me and is utterly terrifying. I see psychosis as being like a waking nightmare. I am inhabiting a different universe to others and everything is dark and scary. Ghosts and beliefs I am dead and in purgatory are my constant companion. The worst thing about having a level of insight is that I know something is wrong but I can’t work out how to fix it. I feel myself looking down on myself and saying ‘stop this! Just stop this!’ But I can’t use my willpower to make the illness go away.

One of the worst things about schizophrenia is the stigma and attitudes of others. Even the kinder people seem to have prejudicial attitudes around the illness. Apparently I shouldn’t be doing any of the things I do because I have schizophrenia. I work in a professional role in government administration, I write books and give talks and I own property. Many people think that those with schizophrenia can’t do those kinds of things. We also aren’t ‘meant’ to be in relationships or have kids! The stigma and attitudes in this space often hold people back from achieving things they would like to achieve. Even I thought this. I moved to Canberra in 2007 to take up a public service role. I assumed I must be cured of my schizophrenia because – to my mind at the time – people with schizophrenia weren’t public servants! I didn’t see a psychiatrist in my new home in Canberra and instead saw a GP to prescribe my anti-psychotic medication. I continued to think I did not have schizophrenia up until 2010 when I became very unwell with psychosis and spent the next three years trying to manage severe illness.

I didn’t accept my schizophrenia in any real way until about 2021, having had the same diagnosis since 1995 and finally thinking maybe all those psychiatrists saying the same thing might be correct! It is not a diagnosis I have really embraced until very recently. Now I keep meeting other people with schizophrenia – including some autistic ones – and it is a libration. The illness is a huge challenge for me but being in touch with others with similar experiences is fantastic. 

And just a couple of concluding points… schizophrenia is NOT a ‘split personality’, psychosis does NOT mean violence and people with schizophrenia are in all areas of life, they just might not tell you about it due to fear of stigma. I am proud of myself for managing challenges and doing the best I can to change the world as much as I can in the mental health space as well as the autism / Neurodiversity one. While my schizophrenia poses a number of very difficult challenges, I have learned a lot through managing it and I feel like it has increased my empathy and emotional intelligence. I hope I remain free from psychosis for as long as I possibly can.  

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