Like a great many people in the world – including a lot of autistic people – I have a mental illness diagnosis. In my case I have an atypical sort of schizophrenia / psychotic disorder which I have been treated for since 1995. I take daily medication and on several occasions I have been very unwell. People who see me now tend to comment on how I am very self-aware and insightful and I am very clearly in charge of my mental health and wellbeing but this was not always the case. These days I can converse with the crisis team or my psychiatrist and articulate my needs to them. However, in the past I was institutionalised and the largely at the mercy of my illness.
While most of my advocacy is focussed on autism, a lot of my experience is tempered by my constant negotiation with my errant brain. Everything I do is viewed through the lens of ‘will I be able to keep my commitments or will I be too unwell?’ Between 2010 and 2013 I was extremely unwell and took nine months off work and and had eight hospital admissions. I was sustained by my wish to keep my job and my home. I managed to do this through a combination of the support of my managers at work and the health case managers from HR as well as the support of my parents and some great friends and my own determination. But while my struggle is internal a lot of the time there is another struggle: that of the way the world and many of the people in it view mental illness.
How many times have you heard someone – or yourself – use the term ‘insane’ or ‘crazy’ or ’mental’ to describe something bad? I know I do it quite frequently. It is ingrained and it is everywhere, yet few people notice it, even less complain that it harmful or discriminatory. How many times is medical terminology such as ‘psychotic’ used incorrectly and out of context? Semantics might seem a bit nit-picky but in fact that is far from the case. The term ‘psychotic’ relates to a state of psychosis which is where a person believes unusual, irrational ideas and can experience additional bits of reality – like hallucinations such as voices. However, when people say ‘psychotic’ in the media the word is almost always used to mean psychopathic or violent which are in fact totally different things. So why does this matter? Well imagine you are me with my psychotic illness and you have started in a new team at work. You don’t know your manager or colleagues well and then you notice your world getting more frightening and confusing. You try to manage it but eventually you need to take time off. So what will you say to your manager about your absence? How do you frame the nature of your illness – if you feel strong enough to tell them about it at all? I have had this dilemma many times and it is really hard working out how to explain even that one thing of the meaning or psychosis. Now while I have got you imagining things, then imagine that you are not extroverted, confident Jeanette who has been talking about autism and mental health to audiences since 2005 but that you are young and shy and self conscious and have just been diagnosed with a serious mental illness. What are you gong to tell your boss about your absence? I know quite a lot of people who just simply leave jobs rather than have that conversation, and given the stigma surrounding mental illness, that is hardly surprising.
That is one tiny fraction of what life can be like. Some other major challenges are assumptions that people with mental illness cannot work or do other activities. On of the biggest issues seems to be a public hospital system that most people I have spoken to who have been involved in – including me – have found quite unsupportive and institutional. They recount being either infantilised or demonised a lot of the time. In fact in my own experience most of the terrible invalidation and abuse I have experienced has happened in hospitals and other settings which were supposed to be therapeutic. And autistic people with mental illness very often experience a range of other discrimination, stigma and ableism on top of the stigma in response to mental illness. Just talk to pretty much any autistic person who has been in the public psychiatric ward or who has tried to convince a doctor who misdiagnoses them that they are in fact autistic.
Mental illness is still in the closet a lot of the time and this really needs to change.
I was part of a comedy night for mental health week a few years ago. It was a great thing with some actual comedians and then me! At the end, one of the audience members came up to talk to me. She told me she was a nurse in the psych ward I was in on and off between 2010-2013. She told me how wonderful it had been having me in the hospital because I talked about rights and empowerment. She told me she hadn’t been aware of that before she met me. This person had been a nurse for 25 years! At that point I realised that there needs to be a much deeper discourse on the rights and needs of people with mental illness. Why can’t we have pride for people with mental illness too? I think I’m up for that. Mental illness is really nothing at all to be ashamed of. If anything, I am proud at how I manage my illness and have learned so much about living well and how I share my thoughts and insights with others to help them. Surely this is something worthy of some pride? I guess that is why I talk about mental health and will continue to do so. We need change in this space.
And this isn’t meant to be a shameless authorial book plug, more something people might find helpful that I just happened to coauthor! It is by me and Dr Emma Goodall, Dr Jane Nugent and I wrote this book called The Guide to Good Mental Health on the Autism Spectrum