Trigger warning – mental illness
I apologise in advance if anyone doesn’t like my personal reflective posts as this will definitely be one of them. However I think there should be some value for others within my personal musings.
I think most of the regular readers of this blog will know that I have a new book due out any day now which looks at Autism and mental illness. Occasionally people ask why this blog has mental illness in the title. In fact one kind soul explained to me that Autism isn’t a mental illness but a neurological condition. I thanked him and explained that I was aware of that but that Autism and mental illness are both things I know quite intimately.
I think if I were a child in this day and age I would have gathered myself a mental illness diagnosis when I was about 10. However when I was a child mental illness had to be extremely serious in children to be treated. I got my first mental illness diagnosis when I was 21. I was told ‘Jeanette you have schizophrenia. You will have to take this medication for the rest of your life’. I could almost hear the psychiatrist apologising that my life was essentially over under his breath. In the ensuing few years I was given a bunch of different diagnoses. I had a really tough time – not just with the illness but with the attitudes of some of the health professionals who weren’t very helpful. Like many Autistic women, my Autism was missed and I got the borderline personality disorder diagnosis. Because I was engaging in anti-social behaviour as well, I ended up in prison a few times. Every single magistrate would look very apologetic and say to my lawyer ‘Thank you for showing me Jeanette’s beautiful paintings. She definitely doesn’t belong in jail but there’s no other place.’
I overcame all that stuff mostly due to willpower, motivation and the good intentions and care of my family I think. I had a reprieve from the worst of my illness for some years – which regained its schizophrenia name tag in about 2002 and has hovered around that diagnostic neighbourhood ever since. I managed to finish my education and join the public service in a feat of extraordinary audacity and unlikeliness. I bought a house and became middle class.
A couple of years later and my world imploded. It crept up on me. I didn’t see it coming but when I was within its grasp all logic disappeared and I knew I was dead, in purgatory, punished by God. My house the enemy, my brain the enemy. I dragged myself to work because it didn’t occur to me not to. There was no help. I had ditched my psychiatrist when I joined the ranks of the affluent and comfortable. All I had was my well-meaning GP who wasn’t really qualified to help much. When I eventually tried to access mental health services – mostly because I thought there were demons in my mind – they weren’t much help either. Apparently home owning public servants don’t need public mental health services. I had denied my schizophrenia diagnosis for some years so did not share that little fact with mental health professionals. I imagine this probably made things a lot worse for me. By the time I did finally end up in hospital, I was in Hell. I suspect that leaving it for so long to realise I needed help and then having help denied for some months made the whole episode of illness considerably worse. I first went to hospital in 2010 and my most recent admission was over two years later in 2013. I accessed every acute mental health service in Canberra.
The illness has stuck around and I am still in its grip but I have learned some useful ways of managing it. I am using one of these tonight. I find activity – particularly writing – helps me to feel better, as does helping other people. Because, like many other Autists, I have alexithymiea (’emotion blindness’) I struggle to know when I am feeling unwell so it often creeps up on me over a few weeks and by the time I understand what’s going on it’s worse than I’d like. This has happened in the recent weeks. Because I have had a lot of episodes of illness and recovery, I am very good on insight, self awareness and strategies for coping.
In 2013, shortly after I started to recover to a point that I could avoid hospital, I started writing a book about my mental health journey. Over the past three years this has morphed into a how to guide for Autistic people, those that love and care for them and health professionals about managing mental health issues for Autistic people. The book is absolutely chock full of useful information, peer mentoring advice and wisdom. It stopped being entirely my baby and gained some additional ‘mums’ – psychiatrist Dr Jane Nugent and academic, Autism specialist and advocate Dr Emma Goodall.
One of my best strategies for coping with my errant mental health is to do work which helps others. The book is that crystallised. All those things I have learned over the years, all those tips and strategies for managing my health I have put into the book. So tonight I will go to bed feeling awful. If experience is to be trusted I will fee awful for a few weeks – lacking confidence, terrified of ghosts and demons I see around the house, depressed, sensitive, paranoid, hearing people insult me when I’m fairly sure they aren’t, emotional and profoundly drained. This is my life. It gives me motivation and insight but it also gives me suffering. I am OK to suffer. I reflect that my life is an unusual gift – I should have exited our beautiful and broken world many times when I was younger and didn’t. Life with mental illness and Autism can be so challenging. Things like misdiagnosis, inappropriate treatment, a lack of self awareness and just the very fact of mental illness symptoms can be overwhelming and awful. For me I manage by combination of distracting myself, helping other people, cuddling Mr Kitty and chasing accomplishment. Others have their own strategies. It is possible to do it, to live with both Autism and a mental illness but it can be hard.
I didn’t intend this post to be a book plug but the book is very relevant to this post, so here is a link: The Guide to Good Mental Health on the Autism Spectrum
If you are dealing with this stuff, I am most definitely in your corner.
And if you are struggling with suicidal thoughts or other challenges, in Australia you can contact Lifeline – 131 114
UK/Republic of Ireland -The Samaritans
08457 90 90 90 (UK)
1850 60 90 90 (ROI)
USA – Suicide Prevention Lifeline;