When I was told that my mum was living with schizophrenia – by my school counsellor, when I was about 14 – I had almost no concept of what that really meant. All I knew for sure was that it felt dark, scary and taboo. In other words, my understanding of complex mental health was almost entirely defined by the stigma that surrounds it.
I had begun to suspect that there was something rather odd about Mum, beyond the normal eccentricities. Maybe not everyone’s parents spoke to unseen voices from time to time, or became wildly obsessed with home break-ins. Putting a name to the diagnosis made parts of the puzzle fall into place – but it also opened the door to more questions: What was schizophrenia, actually? Who else was living with it? And why hadn’t I heard their stories?
Alone and on the internet (as I spent the majority of the early 2000s), I would try to conduct my own research, trawling through Wikipedia pages and devouring any information I could find from dodgy websites. Later I would complete a psychology degree, so hungry to learn more about the mind and complex mental health diagnoses. But even tertiary study fell short in providing me with any satisfactory answers.
It wasn’t until I started researching for my own book about complex mental health conditions in Australia that I started to understand schizophrenia, and why, as a young teenager, I didn’t have access to the kind of information I needed about it.
I met dozens of incredible people living with complex mental health conditions such as schizophrenia, as well as their families and carers. It was only through these conversations that I came to understand what it was like living with these diagnoses, including the complications and failures of the mental healthcare system.
So, what were the biggest lessons? The ones that I wish 14-year-old me had known?
Firstly, I began to understand that beyond the definition accepted by the Diagnostic and Statistical Manual of Mental Disorders (AKA the mental health bible the DSM), the lived experience of schizophrenia is vastly different from person to person. We define schizophrenia by the presentation of hallucinations, delusions or disorganised speech – but the ways that these symptoms manifest, and their severity, are completely different for everybody. Some people will become acutely unwell living with schizophrenia, and need attentive care for many, many years; others will slip in and out of psychotic states and may live relatively “normal” lives in between. Some people, despite all the medication and treatment that psychiatric care can provide, will still go to sleep and wake every day hearing voices, in a way that can become almost banal, routine. And then others still, like my mum, may find that medication quells most symptoms, for most of their lives. In fact, schizophrenia is such a wildly variable condition that many practitioners are now arguing for the abandonment of the diagnosis altogether.
What I wish I had understood next was how remarkably lucky Mum has been with her experience of psychosis and schizophrenia. Of course, it’s an extremely variable condition to begin with, but I wish I knew earlier how much the outcomes of schizophrenia can depend on things like socioeconomic circumstances, location and social support. I think I would have felt much more compelled to talk about my family’s experience earlier, to try to draw attention to the ways that Mum had recovered, and to try and dispel some of the immense stigma surrounding her condition. Our mental healthcare system in Australia has some gaping holes that people less privileged than Mum continue to fall through; it’s immensely frustrating that, ultimately, it’s stigma that keeps us from openly talking about these huge systemic failures.
Possibly the biggest revelation that I came to was that so many people living with schizophrenia and other complex mental health conditions can, given the right resources, recover and lead immensely fulfilling and happy lives. Of course, I had seen it happen with Mum – but neither I, or the people around me, were ever exposed to any positive narratives of schizophrenia, online, in newspapers, or (God help me) in movies or TV. It would have meant so much to know that our family wasn’t an isolated story, that there were people out there we could relate to, and who would understand us. Even more than that, having those narratives available would have meant that my friends could have understood what our family was going through.
My greatest hope now is that we become more accustomed to seeing the success stories and, in doing so, come to grasp the systemic barriers that prevent so many people with complex mental health conditions from walking that path towards recovery.
The One Thing We’ve Never Spoken About by Elfy Scott is out now through Pantera Press
In Australia, support is available at Beyond Blue on 1300 22 4636, Lifeline on 13 11 14, and at MensLine on 1300 789 978. In the UK, the charity Mind is available on 0300 123 3393 and Childline on 0800 1111. In the US, Mental Health America is available on 800-273-8255
