'I was 14 when I was told my mum had schizophrenia. I've been trying to understand it ever since.'

This is an edited extract from The One Thing We've Never Spoken About, an investigation into the failings of Australia’s mental healthcare system, grounded in a personal story of a mother–daughter relationship.

World Schizophrenia Day is May 24th. 

Few people speak openly about schizophrenia. We don’t speak openly about it because to do so is to put fear in the heart of those you’re speaking to.

For many of us, the word ‘schizophrenia’ alone elicits thoughts of a nightmare, a killer, something to be avoided, to run from. Saying it out loud rarely makes us think of a mental health condition in the same way that hearing someone is depressed or anxious might, and it rarely sparks feelings of genuine empathy.

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And since so few people speak openly about schizophrenia, its cultural identity is distorted by myths and misconceptions. The truth is, the schizophrenia many of us think we know fails to reflect the reality of the schizophrenia that most people experience.

The lack of public dialogue is a two-way street: we don’t get the education we need about schizophrenia, so we don’t speak about it; we don’t speak about schizophrenia, so we don’t get the education. You’ll find these kinds of frustrating, catch-22 cycles throughout my book, The One Thing We've Never Spoken About, and it should become increasingly obvious how much we need to break them.

As a teenager, I wasn’t provided with any particular understanding of what schizophrenia was, apart from my school counsellor informing me that my mum had it. In her quiet, dark office beneath the school’s languages block, the single piece of guidance the counsellor gave me was to say that ‘the more informed you are about schizophrenia, the less likely you are to develop it yourself’.

To this day, I still have no idea what she was talking about. I have never come across any research suggesting that to educate yourself about schizophrenia is to build a barrier against acquiring it. Maybe what she was really trying to do was to give me, a naive and floundering 14-year-old, licence to learn for myself about Mum’s condition, although this is of course difficult to know in retrospect. It’s possible that she just had no idea what else to say to me, and simply wanted to fill up some space with words (I would empathise with this).

Whatever the counsellor’s intentions or failings, I was equipped with my own curiosity and the family’s desktop computer, so learn is what I did. I spent hours poring over medical websites, spurious articles and Wikipedia pages as though my life, or rather my sanity, depended on it. I came across forums in which people wrote candidly about their firsthand experience and read schlocky news reports about children with psychosis.

Once I even found a primitive virtual reality game that claimed to evoke the same feelings as psychosis, with digital renderings of bats flying about in a therapist’s office and sinister voices slipping in and out of my cheap, early-2000s headset. (I could never rediscover this page, despite some frustrated deep dives into the internet in recent years.)

Later, when I was studying psychology at university, I would devour information about schizophrenia and psychosis with the same voracity. I think it would be fair to assume that my interest in pursuing a psychology degree was sparked by those nights spent alone on the internet, trying to comprehend psychosis and what caused it. (Although my brother says he only chose to study psychology because there were lots of hot girls enrolled in the course, so it’s not like this was a shared experience across the household.)

When you feel deprived of a conversation in real life, discovering the ins and outs of that conversation in a digital world or through books becomes about much more than education. The information becomes a pathway to discovering facets of your own identity and history. It enables you to form a deeper, more empathetic understanding when there’s no one in your everyday life to take cues from. I learned about schizophrenia because I needed to get a foothold on my own family. 

I needed to understand who we were and why everything felt so bent out of shape so often.

Listen to No Filter, on this episode, Elfy joins Mia on No Filter to discuss her own experiences with her mum’s schizophrenia, and whether the stigma around complex mental health issues can hold people back, even more so than the disorder itself. Story continues below.

This is all to say that my reasons for learning about schizophrenia have been deeply personal. For those of you who don’t have a family member with this condition, you may think to yourself, ‘Well, Elfy, that’s all well and good, but why do I have to learn about it?’ To which I would say, well, first, you might know somebody living with this condition and just not know about it. But also, even if you don’t, I think we all have some responsibility to learn about complex mental health conditions.

Learning this stuff equips us with the knowledge to truly empathise with people in our communities. It enables us to fight misconception and stigma. 

Learning about the state of mental health care in Australia initiates conversations we desperately need to have about how we, collectively, treat vulnerable people, about our duty of care, about the fraying of our social contract.

Image: Pantera Press.

The One Thing We've Never Spoken About by Elfy Scott is out now with Pantera Press.

Elfy Scott is an executive editor at Mamamia. 

Images: Supplied.