I know quite a few people who live with depression, anxiety, PTSD, OCD and bipolar disorder, but no one has disclosed to me that they live with schizophrenia. This is not to say I don’t know anyone living with this condition, only that so much stigma is attached to schizophrenia that people often don’t feel comfortable sharing their diagnosis with the people in their life. I’m hopeful that books like this one will help break the silence that surrounds it.
Prior to reading this book I probably could have muddled my way through the DSM-5 criteria and maybe rattled off some statistics. However, the only times I’ve only heard from people who’ve been diagnosed with schizophrenia is in documentaries about mental health whose focus is invariably on the more well known diagnoses of depression and anxiety. The stories about those with schizophrenia were told in passing, usually referred to in hushed voices and terminology that you’d expect more in reference to people who are terminally ill.
The truth is, the schizophrenia many of us think we know fails to reflect the reality of the schizophrenia that most people experience.
In this book, the author opens up the conversation about what life looks like for people living with schizophrenia and their loved ones. They look at environmental risk factors, such as trauma and poverty, and explore the stigma that surrounds diagnosis and the different models of mental health. Contrary to their portrayal in the media, people with schizophrenia are more likely to be victims of violence than perpetrators.
The importance of peer support and the limitations of our health care, housing and justice systems are explained. The experiences of a number of people living with schizophrenia are told throughout the book, and it becomes abundantly clear the role privilege plays in the way schizophrenia is treated (or not) and how individuals are able to manage their condition.
I was encouraged by how well the author’s mother’s schizophrenia has been managed but was also very aware of the privilege that facilitated such positive outcomes. Being able to afford and access appropriate medical care from the time that symptoms appear, as well as having secure housing and a network of supportive family and friends are luxuries that many people don’t have.
I was relieved that Elfy’s mother didn’t have to deal with a lot of the struggles that other people diagnosed with mental illness face but, as someone who needs to advocate for myself in a broken health system, I also found myself envious of the privilege that allowed her to get the treatment she’s needed when she’s needed it. I imagine if I was reading this book as a family member of someone diagnosed with schizophrenia, this disparity would hit me even harder.
The author openly acknowledges this privilege. This book also includes the voices of people who I expect would represent the majority of people who live with schizophrenia, those who don’t have access to adequate medical care and who don’t have secure housing and an abundance of supportive people in their life.
Even with all of the resources their family had, their mother’s schizophrenia was an open secret for Elfy and her siblings when they were growing up.
Her condition didn’t feel shameful to speak about so much as it just felt quite scary and dark – too jarring to make sense in our day-to-day lives outside of the house and too big to concern other people with. And so it became a secret.
One of my pet peeves, talking about what we’re going to talk about before getting into the talking about it, was present in this book. To be fair, this is something I come across more often than not in nonfiction reads and it probably says more about my impatience to get on with the learning than anything else. Once I made it past the introductory material, the stories shared by the people with lived experience hooked me.
Where this book shone was its inclusion of the voices of so many people living with schizophrenia, as well as schizoaffective disorder and bipolar disorder. Diagnostic criteria and statistics can only take you so far. It should go without saying but if you want an understanding of what it’s like to live with a condition, listening to the people who know it from the inside is invaluable. You can know in theory that people who live with schizophrenia experience stigma but until someone with lived experience explains how that impacts them personally, you can stay several steps removed from that reality.
If a quarter of all Australians are affected by a complex mental health condition in some way, whether through firsthand experience or by way of a relative or friend, then we’re forced to ask: Why aren’t we talking about these issues on a national scale? Why does it seem like nobody cares? And who does it serve for us not to care?
Content warnings include mention of bullying, death by suicide, domestic abuse, homelessness, mental health, racism, self harm, sexual assault and suicidal ideation.
Thank you so much to NetGalley and Pantera Press for the opportunity to read this book.
Once Upon a Blurb
An investigation into the failings of Australia’s mental healthcare system, grounded in a personal story of a mother–daughter relationship.
Journalist Elfy Scott grew up in a household where her mother’s schizophrenia was rarely, if ever, spoken about. They navigated this silence outside the family home too; for many years, this complex mental health condition was treated as an open secret.
Over the past two decades, we have started talking more about common mental health conditions like depression and anxiety. But complex conditions like schizophrenia, bipolar disorder and psychosis have been left behind, as have many of the people who live with these conditions or who care for them.
Part memoir, part deep-dive investigation, The One Thing We’ve Never Spoken About is filled with rage at how our nation’s public discourse, emergency services and healthcare systems continue to fail so many people. It is also a work of care, telling the little-heard stories of people who live with these conditions and work at the front lines of mental health. Above all, this timely, compelling book is informed by hope and courage, breaking down taboos and asking big questions about vulnerability, justice and duty of care.