Journalist and author Elfy Scott remembers occasions throughout her childhood when she’d see her mum speaking to unheard voices. Her mother had been diagnosed with schizophrenia, a mental disorder that affects roughly one in 100 people in Australia, just before Scott was born. But it wasn’t until the journalist was about 14 years old that she was formally told that her mother was living with a complex mental health condition.
Her mother’s schizophrenia was rarely if ever acknowledged in her family household in an attempt to shelter Scott and her two siblings. “My mum was very, very obsessed with the idea that there were people who were trying to invade the house, like home intruders who were trying to steal our documents and things like that,” says Scott. “I always remember her cooking dinner and saying things out loud like, ‘Get away from me’ and ‘Why are you in my house?’ to people that weren’t there.”
While Scott recalls “scattered” experiences observing schizophrenia growing up, she stresses that she did “all the average and happy kid things that most average and happy families did”, and acknowledges that her family lived a largely privileged middle-class life in Sydney’s North Shore. She remembers weekends at the local pool, watching Blackadder, playing Monopoly, her mum picking her up from school and eagerly awaiting her dad’s homecoming from work.
“It [her mum’s condition] didn’t really bother me, to be honest. It wasn’t something that I felt traumatised me at all or negatively impacted me,” she says. “It was a very small fraction of what Mum was like because outside of that, she was just like a very normal parent who ferried me to school every day, cooked me food and took me to soccer and stuff like that. It was a very small percentage of the experience that I had with her.”
Instead, Scott says the most profound way her mother’s schizophrenia has made its mark on her life is through the silence that masked the condition in her early years.
She has since come to realise that there must be others who have also felt silenced in the same way — including those more vulnerable. It’s partly why the award-winning journalist decided to write her debut book, The One Thing We’ve Never Spoken About, shining a spotlight on the lived experiences of people with complex health conditions. Part memoir, part investigation, Scott shares her family’s lived experience and her mum’s diagnosis in an effort to break down taboos and stigma about complex mental health conditions.
Navigating stigma
The author was first formally told about her mother’s schizophrenia by her school counsellor when she was 14. As a teenager, she wasn’t provided with an understanding of the condition, the variabilities of schizophrenia or what it meant for her family. All she knew at the time was that it felt dark, immovable and secret.
“I just couldn’t talk about it to friends, and I think part of that was because I knew that they wouldn’t fully understand,” she explains. “But I think it’s also because I didn’t fully understand. I didn’t really have any sort of rigorous understanding of what complex mental health or schizophrenia was.”
In her book, Scott describes her mother’s schizophrenia as a condition that “didn’t seem shameful to speak about so much as it just felt scary and dark — too jarring to make sense in our day-to-day lives outside the house and too big to concern other people with. And so, it became a secret.”
While putting a name to the diagnosis filled in some of the gaps, Scott says it also opened the door to more questions. “Understanding without actually being nurtured or educated about those topics was just as confusing. It just meant that I knew there was something we weren’t speaking about.”
When Scott found out about her mother’s schizophrenia, she trawled Wikipedia in search of information. Instead, she found reports about children with psychosis and even a primitive virtual reality game that claimed to invoke the same feeling as psychosis. “There were no stories of everyday people living with schizophrenia,” she says. “Everything I read was to do with crime and inextricable madness, and none of it was realistic. It was all just salacious and dark and dramatic. I think that’s what a lot of people grew up with as an understanding of schizophrenia. There was just no access to anything.
“We’ve also just been so exposed to so many stereotypes in the media — such an everyday part of what we consume. It is difficult to question things when we’ve just been exposed to them for so long.”
The lack of access to information and understanding of these conditions led Scott, in part, to study psychology at university, and later, to write her book. “I had an interest sparked in psychology because I was reading so much about it,” she explains. “In high school, I was reading all the classic pop psychology books and things like that, probably as some sort of tactic to try and understand Mum’s condition but also my own mental health.”
While admirable work has been done over the past two decades to generate public dialogue about more common mental health conditions, like depression and anxiety, the author believes complex conditions like schizophrenia, bipolar disorder and psychosis are still shrouded in taboo and stigma.
In her book, Scott describes her experience writing a column for The Guardian in 2021 to coincide with Schizophrenia Awareness Week. It was the first time she had spoken publicly about what her family had experienced and her mum’s condition. She says “sharing the secret” was a “terrifying prospect”.
She later describes speaking about schizophrenia as “inherently risking something. Risking Mum being seen as lesser, as a bad parent somehow, even dangerous. Risking being looked down upon as a child of a parent with a little-understood mental health condition and maybe even being seen as myself doomed to madness.”
The author believes the concepts of stigma and taboo are also very much linked to our mental health conversations, particularly when discussing productivity and capitalism. “There’s a huge cycle of systemic failure, ignorance and lack of education and then broader societal issues that feed into stigma,” she says. “We are very willing to have conversations about mental health as long as those people continue to be productive. But as soon as we speak about people who are actually genuinely disabled by mental health conditions, that becomes a very tricky topic.”
Speaking out
It wasn’t until Scott started research for her book about complex mental health conditions in Australia and reading her mother’s journals that she began to understand schizophrenia and her mother’s lived experiences.
During the development of her book, and in the months following, she has met many people living with or caring for family members with complex mental health conditions. “I feel quite profoundly that silence serves nobody,” she adds. “To not be able to speak about complex mental health conditions when you come from a family where that is absolutely part of your world is really stifling and alienating because you don’t have a sense of context about yourself. The inability to open up very basic conversations about these topics just continues to keep so many families and people living with mental health conditions completely in the dark. Trying to break through those barriers and trying to get people to understand why they have certain biases is really important.”
Scott admits that opening up the conversation in her own family household has helped strengthen her relationship with her two siblings and her mother, who encouraged Scott to write The One Thing We’ve Never Spoken About. “That was a really gradual process,” she says. “I think a lot of that came from me and my siblings looking back at what had happened when we were children and maybe trying to compensate for that and opening up ourselves. And my mum has really surprised me in a positive way. I pitched the book to her, and immediately she said that she was on board with the idea as long as it helped other people.”
Systemic challenges
Scott says her mum has been fortunate to have a strong family support network and the financial means and geographical proximity to access regular care. But her book interrogates how Australia’s public discourse, emergency services and healthcare systems continue to fail so many people.
“Others aren’t that lucky. They can’t afford psychiatry appointments, they can’t afford the private services to make their lives better and help them on their way to recovery, and the free services that should be there to help people get by and keep their mental health from deteriorating simply do not exist,” Scott writes in her book.
When it comes to schizophrenia specifically, she explains the condition is a vast spectrum that impacts everyone differently. “For instance, people can have schizophrenia and experience quite low-level symptoms, or people can have very severe forms of schizophrenia,” she says. “But I think that it is an unignorable fact that the outcomes are also defined very much in part by people’s socio-economic status and their ability to pay for themselves, to go to a psychiatrist, to house themselves, to afford medication — all of that plays into a person’s ability to recover from a complex mental health condition.”
More than 700,000 Australians live with complex mental health conditions, and a quarter of a million people care for loved ones who have them. Globally, schizophrenia affects approximately 24 million people, or one in 300 people.
According to the World Health Organization, the vast majority of people with schizophrenia around the world are currently not receiving mental health care. In Australia, Scott says there are huge gaps in our mental health care system for those with complex mental health conditions. “It feels like the talk about complex mental health is to talk about a problem that is too big for average people to deal with,” she explains, adding that the most clearly demonstrated gap is that our mental health care system is heavily geared towards looking after emergencies.
One of the biggest frustrations for advocates and mental health care workers, according to Scott, is that there just isn’t enough community-based care to try and support people’s wellbeing, which is why so many end up in emergency situations.
In her book, the author discusses how the lack of community-based care can also have direct psychiatric consequences. She states that the longer a person goes with untreated psychosis, the greater the likelihood they’ll have poorer mental health outcomes in the long term. “There’s nothing to actually insulate and stop people from getting to that point,” Scott explains. “As soon as you become a bit more in need of more intensive care, all of that sense of safety goes out the window, and you’re really just left to fend for yourself.”
Scott says this has been particularly evident during the COVID-19 pandemic, which exacerbated an already flourishing mental health crisis as waiting lists for psychologists and psychiatrists around the country became untenable. “By late 2021, psychologists and psychiatrists were saying that they had waitlists of up to six months,” Scott states in her book.
To overcome these issues, she believes we need to redefine how we think about mental healthcare, become more accustomed to seeing the success stories and overhaul the systemic barriers that prevent so many people from accessing support and recovering.
“We really need to see the funding and resources tip from one end of the spectrum to the other so that the missing middle can be cared for. It’s a huge amount of work, and it’s sort of already happening, but the successes of that story are yet to be fully seen.”
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