I saw my psychiatrist today. As always this was an opportunity for philosophising about life, the universe and everything (I do turn 42 this year, after all).  We discussed medication -mine to be precise. I reflected that if it wasn’t for the anti-psychotic medication I have taken for 21 years I would have been unable to be a public servant, an advocate and public speaker, an author, a Masters graduate, a homeowner, a member of ordinary society. Instead I would have ben kept in an institution for my adult life. If I was ‘lucky’, I would have been released into the community with little or no support. I would probably be a homeless person begging for change at the bus stop, a crazy lady who parents would caution their children to avoid (even though madness is rarely contagious).

While I have reflected on this matter before, what really brought it home today was when my psychiatrist said today ‘You would have been in the asylum. They would have had you working in the kitchen because you are reliable.’ The instant after he said that I saw myself  unmedicated and terrified, scrubbing pans and hoping to please the work supervisor in the institution. This was not a big stretch for me because I did spend some years in my youth in various institutional settings.

I saw the fragility of mine – and others’ – existence and livelihood. I mourned for those thousands upon thousands of people with mental illness who have been put away out of sight in the absence of effective medication or therapy and denied the opportunity to reach much of their potential. I had a step-grandmother I never met because she died before I was born. She had a similar mental illness diagnosis to me. She died very young and as far as I could tell didn’t have much of a life. There are almost no relics of her among my mum’s bulging cupboards of family memorabilia. I saw a photo of her for the first time only a couple of years ago.

More effective medication has allowed some people, including a very grateful me, to live a more fulfilled life. Things have changed in mental illness treatment and support but there is still a long way to go. An example of this is to  compare my Autism advocacy and my mental health advocacy. Autistic people are socially disadvantaged but we have a strong and growing self-advocacy movement and a growing influence in society. Of course this is great and I’m all for it – in fact I try to be a driving force in it.  The advocacy movement for schizophrenia  – which I have a version of – is far less noticeable.

While many Autistic people are very proud to be Autistic and happily identify as such, people with schizophrenia seem a lot more likely to keep to ourselves. I don’t know of any current celebrities who identify as having schizophrenia… (And bugger it – I’m owning this. From now on I am ‘schizophrenic’. Person first language my butt!)

Anyway, mental illness is still seen by many as a character flaw, a deficit in personally, a guarantee that everything the person who has an illness says is crazy and irrational. We are seen as prone to violence, ‘attention seeking’, incapable of holding down a job, dishonest, dependent, needy.

I am grateful that I acquired my illness at a time where there were more effective treatments than me spending the rest of my life being ‘reliable’ and scrubbing pots and pans in an institution. For me to think of that waste of potential is horrifying and sobering.

While I am glad we don’t routinely institutionalise people with mental illness for long periods of time, there is still a very long way to go. The first thing  would like to see was a society where schizophrenic folks were able to openly talk about their illness and experience without terror of discrimination.

The illness itself is usually a big challenge and often results in a fair degree of psychiatric disability. I have only worked for a portion of my adult life and I know that there is always the possibility I will need to stop work due to my illness, if only for a while. There is another issue though, which is that there is so much stigma about psychotic illnesses that most of us prefer to keep it from employers and others in authority often for fear of the often all too real discrimination.

In my time in various workplaces I have had a number of colleagues come up to me in a quiet corner and whisper ‘I have schizophrenia too. please don’t tell anyone.’  If we have no voice we are essentially silent and invisible. If you ask whether there are schizphrenic people in professional roles in the workforce I can categorically say there are because I know a bunch of them but most people would probably answer no to that question. An Indigenous Australian advocate said something which stuck with me. She said ‘if you can’t see it, you can’t be it.’ Until other people with mental illness see their peers proudly holding jobs in different industries involved in all spheres of society, including in civic and leadership positions, we will be disadvantaged.

A few years ago I was really unwell with psychosis. I took nine months off work in a two year period. I was supported wonderfully by my workplace, but it was a very frightening and difficult time. I stayed in a residential mental heath service a few times. One time I was there, one of my housemates was a quiet young woman who had just gained the same diagnosis I did at around her age. I think this woman saw me as a bit of a role model. One day she knocked on my door and said ‘Jeanette, I’ve been told I have schizophrenia. What does it mean? Will I be able to do what everyone does? Work and stuff?’ I replied to her that the diagnosis did not need to mean anything other than the medical interventions it would require – probably medication, seeing a psychiatrist, possibility hospitalisation if things get too awful. I told her I had a job and a Masters degree and that support and self-acceptance was key.

So yes, I’ve come out schizy. I don’t know that I have time to do as much advocacy around schizophrenia and mental health as my Autism world work but I will gladly lend my thoughts and encouragement to and advocacy movement that breaks down the hundreds of years of stigma and segregation about mental illness. Yay! (Mr Kitty approves too.)