One wall of the conference room in Berry Street’s Richmond office is a window. Through the glass pours a diffuse light that coats the white walls, the dark carpet, the surface of the table, the fidget spinners on it, and the 21-year-old hand silently causing one of those gadgets to rotate speedily. This hand belongs to a young woman I will call Eliza, who is telling me about her work as a lived experience consultant for Berry Street’s Y-Change initiative, a role she has held for the past four years.
To understand how remarkable it is that Eliza is sitting in this room making time to talk to me about her work, you must first understand a few things. She has survived childhood sexual abuse, physical abuse, psychological abuse and homelessness. She was expelled from school in year 8. She’s had four hospital admissions for acute distress and suicidal ideation. And she manages borderline personality disorder (BPD), which means dealing not only with symptoms which range from the inconvenient to the life-constricting, but also with the stigma that attends this diagnosis.
Our personalities are signature ways of thinking, feeling and behaving that distinguish us from others. Personality disorder is a complex and severe mental disorder estimated to affect approximately 6% of the global population. According to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, it is an enduring way of thinking, feeling and behaving that deviates from socio-cultural norms, causes distress or problems functioning.
The DSM’s categorical approach specifies 10 types of personality disorder, including borderline, each one involving a persistent, pervasive pattern that begins around late adolescence or early adulthood and impairs at least two of the following areas: how one thinks about oneself and others; how one relates to others; emotional responses; and behavioural regulation.
Personality disorders are enduring and can be severely impairing, similar in these respects to intellectual disability and autism spectrum disorders. They were long considered untreatable, but that is no longer the case. While treatment type depends on individual circumstances, psychotherapy – sometimes with medication – is currently considered the best way of gaining insight and learning coping techniques.
Recovery is achievable. However, personality disorder has received minimal recognition as a public health issue. Until very recently, for example, its incidence was not tracked by the Australian Institute of Health and Welfare. Untreated individuals may be unable to learn or work, they can develop additional mental health issues such as drug or alcohol addiction, they may fall into social disadvantage and they also have a high suicide risk.
Although BPD is a serious mental disorder and its symptoms can improve with treatment, there is a general belief, which is also not uncommon among those who work in mental health, that those with the diagnosis are immoral (in the sense of being deliberately manipulative or dangerous), beyond help or hope. Doctors have spoken to me of a prevalent therapeutic nihilism. A mental health researcher told me that patients with the diagnosis have been de-prioritised on hospital wards. A peer support worker once advised Eliza not to tell her new psychologist that she had been diagnosed with BPD. “The diagnosis of BPD has few friends,” wrote Dr Andrew Chanen, director of clinical services at Orygen, in Australasian Psychiatry.
“It is the only disorder, I would argue, in all of health, that you can get away with saying things about a patient that no one else would dare say,” Chanen told me. “Having been around in the era when ‘schizophrenia’ was a dirty word, or when ‘HIV’ was a dirty word, people said awful things about those patients. Now you would never hear anybody say those things, yet it is still seen as acceptable to say the most disgraceful, bigoted things about individuals with BPD, and to see their behaviour as wilful.”
‘I was really lost’
Eliza lives with her cat in an inner-city apartment she moved to from an outer suburb of Melbourne. She enjoys scrapbooking and, like me, cried watching the Disney movie Luca, because it so movingly portrays the process of shedding shame. She does not have frequent contact with her father. She speaks with compassion for her mother, a single parent who struggled with financial stress, housing insecurity, addiction, and physical domestic violence as well as coercive control while raising Eliza and her siblings.
Remaining at home was not in Eliza’s best interest, but there was great pressure to stay. One of Eliza’s greatest fears is that she will be responsible – because of something she has done or, more accurately, because of who she is – for her utter abandonment by loved ones. A need to release the intense distress of this feeling has previously led her to significant self-harm. Given this, the natural act of individuation required to leave home to work near the city was akin to scaling an alp. She did it anyway because of something in her character which has survived like those microbes that thousands of years of frost cannot kill. This something is separate from her disorder, her personality structure and the limiting beliefs implanted in her as a result of her traumatic childhood; it may be accurate to call this something Eliza’s Self.
On a number of occasions, over our time talking together, I feel I have seen something of this essential character. It is in her integrity (times when she has chosen being right over being liked), her bravery (times when she has spoken frankly about experiences she admits cause her shame), her persistence despite extreme adversity, her life-embracing curiosity and her intelligence (despite having internalised the belief that she is “not good at school,” she speaks fluently in a professional and emotional vocabulary it took me – with many years of tertiary education – much longer to grasp).
Eliza is an outlier: literally extraordinary. People living with complex mental illness are more likely than the general population to die by suicide. For Australians living with schizophrenia, the risk is 13 times greater; for those living with bipolar disorder, 17 times greater; for those with major depressive disorder, 20 times greater; and for those with BPD, the risk is 45 times greater.
Moreover, of the 174 young people in custody in Victoria’s youth justice centres in the year 2018–19, 67% had been victims of abuse, trauma or neglect, 68% had been suspended or expelled from school, 54% had a history of both drug and alcohol misuse, 35% had been the subject of a child protection order, 48% presented with mental health issues and 27% had a history of self-harm or suicidal thoughts.
Statistically, she should be there, but she is here, calming herself by turning the fidget spinner on a broad, clean table.
“I never, ever, ever in my wildest dreams ever thought I would live to 18,” she says. “I didn’t think about what I wanted to be when I grew up because I knew I wasn’t gonna be there. When I got to 17 and was about to turn 18, I was really lost and wasn’t expecting to be there.”
Eliza entered the mental health system at 12. “When I was 14, I didn’t know at the time but I was experiencing family violence and homelessness,” she explains, about the water she then swam in. “And also a recent sexual assault.” She started drinking daily, doing drugs, spending time in places where that was the norm. At school, she was regularly sent out of class for being disruptive or for not wearing the correct uniform, which was not achievable because she did not own a complete uniform and the items she had were not in good condition.
One teacher she remembers fondly. She would sit in the quiet of his office after being kicked out of class. He would give her face wipes when she broke the rule about wearing make-up, and canteen vouchers when she had no food or money. He bought her tights to wear in winter and helped with her assignments. “He was really good,” she says, “but the person above him, the coordinator for the year level, was like, ‘She has to go.’ Which I do understand, because there was a fight at school. But I did apologise.” She fought with another student. “I threw a chair at a teacher. I stole some food. And I got expelled after that,” she explains, resigned. “They asked me to leave, but they didn’t tell me where to go. They just said I wasn’t allowed to come within a certain amount of feet of the school grounds.
“At the time I got excluded from school – expelled – I’d been struggling with mental health since I was 12. So though years 7 and 8, I was really struggling and school wasn’t …” She trails off and is silent for a moment, during which blood blooms beneath the surface of her cheeks.
“First of all, it wasn’t for me. I couldn’t learn, I couldn’t sit still. I was the destructive kid. And I would come to school with self-harm scars then get sent home because they were like, ‘We don’t know what the fuck to do, you need to go home.’ Which was even more isolating and it made me feel worse. I didn’t feel like school was a safe place for me.”
I look at the car park through the window that is a wall, imagining Eliza at 14; it’s not hard, her face is still so young. I think about what teachers are taught about difficult behaviour. And the devastating consequences of mistaking the last note for the whole song. “Looking back,” Eliza continues, “even if they’d asked me, I wouldn’t have been able to tell them, because I didn’t know what I’d been through, at first. And I didn’t know how to tell them.”
Referring to the period known as childhood, she says, “It was a very violent situation but I don’t remember much ’cause I was a kid.” Eliza was very young when her parents separated, and while that solved some problems, new ones arose. “We were homeless with Mum,” she says, explaining that for a time, they lived in a tent. “Mum told me we were having a holiday. It took me a while to realise; I guess you don’t know what you don’t know.”
The Productivity Commission report found that one-quarter of all people admitted to acute mental health services are homeless prior to admission and most are discharged back into homelessness. Victoria has the lowest provision of social housing in the country. Although priority is given to those on low incomes who have experienced homelessness, family violence or mental illness, over 100,000 people are waitlisted for housing. A quarter of the state’s homeless population are aged between 12 and 24; 6000 young people have no safe place to sleep each night. Many of them are homeless due to family violence. This is not new.
Following decades of underinvestment, the Victorian government is investing $5.3bn – the biggest single spend on social and affordable housing in the state’s history – to build over 12,000 homes within four years. Two-thousand of the homes will be allocated to people with mental illness. In 2021, Melbourne City Mission and the Salvation Army called on the government to also reserve a proportion of the homes for young people.
“Mum was working fulltime, trying to afford for us kids. She was always working,” Eliza says. Much of the time she was alone with her siblings. The family eventually moved to a hotel, then to a house. Although they finally had a home, it wasn’t large enough for the children to have their own rooms, and Eliza was scared of an older male relative who spent time in the house. When she describes the impact of his behaviour on her and her youngest sibling, it is with a deep understanding of intergenerational trauma, how it is held in a body and moves through a psyche. Her cheeks redden again, and she needs to take a break. It is a false strength that cannot ask for help or rest; that is the kind of pretence that serves a function in closed or dangerous environments. She’ll be right. By refusing to play into that illusion, Eliza is modelling something enormously important and that is why I am telling you now.
Her memories of getting Littlest Pet Shop toys for Christmas exist alongside memories of being chased through her home by someone with a knife, knowing there was no one to call for help. One of the reasons relational trauma can be harder to resile from than physical trauma is the element of confusion introduced into the young mind when instances of warmth and love exist alongside instances of abuse or emotional abandonment. In that situation, a child will make sense of abuse by pinning blame on themselves and unconsciously forbidding any knowledge of justified anger towards the parent in order to preserve the possibility of the protector’s grand return. It is, at first, an adaptive survival strategy, but eventually that form of dissociation becomes torturous and life-constricting.
“I didn’t know what to call it, but it felt wrong,” Eliza says. “I tried to tell the teacher, but they didn’t understand the full extent of it and I probably didn’t say it very well.” After her expulsion at 14, she had “a difficult time.” She was misdiagnosed with depression and put on antidepressants. She initially attended a mental health program for children not in school, but her self-harming escalated until her mother locked away everything sharp in the house. If she needed scissors for scrapbooking, she had to wait for her mum to get home. Her mother was overwhelmed, struggling with addiction. An attempt at living with her father was disastrous, resulting in Eliza taking out an intervention order against him. She started running away, consequently missing her appointments with the psychologist. She became homeless.
Despite the intervention order, her father would file missing person reports and the police would track her down, throw her in a divvy van and drop her back at his place. “They treated me like a criminal.” These were months of sleeping in dark places with empty refrigerators, where a child wouldn’t think twice about adults racking lines on their phone screen. The idea of becoming a mum at 14 seemed alluring – not for the Centrelink money, as those around her advised, but to have someone to love and to love her. “And then there was my first admission, which, looking back, makes sense, but at the time it was really confusing. I felt like they just saw the surface level – ‘Oh, she’s self-harming, we need to stop those behaviours’ – without actually understanding why things were really hard for me.
“For hours, hours, I waited in the waiting room and I was lucky that first time to get a bed,” she explains. “The first time was really scary. I didn’t really know what was going on or what was going to happen.” After she was released, the children’s mental health program she had attended referred her to a mobile psychologist. “He would meet me at the library, or he’d come to Mum’s.” Eliza shared some things with him, but was not yet able to verbalise the trauma she had experienced.
At 15, she decided to stop seeing that psychologist. Only when she saw the discharge paper addressed to her mother did she learn he had diagnosed her with BPD. Like the earlier depression diagnosis, her mother had dismissed it. Eliza thinks that perhaps her mother was in denial, maybe worried about the stigma that would adversely affect her daughter. She is, however, angry with the clinical decision not to inform her about her own health. “That’s another problem in the mental health system, but also in surrounding systems – they don’t talk to children and young people.”
After the children’s mental health program ended, she started working at McDonald’s. The near-impossibility of working through her bad days made her believe, at 17, that she would always be incapable of holding a job. The work environment was unaccommodating of physical illness, so she learnt to conceal her mental illness, even immediately following her next hospital admission. She was placed in a small psychiatric assessment and planning unit, located next to the emergency department, which provided short-term, specialised emergency mental healthcare. Eliza explains that because it only had four beds, “you’re very lucky to get a spot”. After being discharged, she maintained some contact with area mental health services. But, ultimately, she was a child who came to her own rescue.
After learning that some friends were attending classes at a flexi school (described as a space “outside conventional education” that addresses “the needs of disenfranchised young people”), Eliza went along one day and returned the next. She kept returning. This is how she earned her adult certificate of education, the equivalent of year 10, which enabled her to enrol in year 11 at a school that offered further educational qualifications. “I got myself into that,” she says, proudly. “No person told me. I didn’t even know flexi schools existed.
“I was 17, still having these issues, they weren’t going away,” she continues. At the alternative school she was attending, students could access free psychological and psychiatric services. She saw a psychiatrist and was diagnosed again with BPD. This time, however, she was given a detailed explanation of the diagnosis. “I was like, ‘That makes so much fucking sense,’” she laughs, explaining what a relief it was to understand why she struggled with certain things and to discover that she wasn’t being negative or dramatic or difficult or disruptive or sensitive or overemotional or ungrateful or a trouble maker or a bitch or a little shit. And that she wasn’t alone.
The system’s flaws
When Eliza describes what would have helped when she needed it most, her answer is both startling and not. The first thing would be housing and financial support for her mother. Then, having someone to talk to who understood how a child thinks about things too unsafe for them to understand, someone who could identify warning signs and connect her to services. Someone to support you, she explains, drive you to appointments and to school, take you driving or out for a coffee, ask how you’re going. Someone who cares about what’s happening in your life. Our systems are really confusing to navigate, she continues, explaining how she broke down in tears at Centrelink. They don’t make any sense; young people shouldn’t have to do everything by themselves. The surprise in what she says is due to what she is describing: the pre-existing roles of society’s adult caregivers: parent, teacher, doctor.
Eliza applied for the role at Y-Change after seeing an ad on Facebook. “It talked about someone who had been through a lot and wanting to be a leader. I didn’t think that I was capable of doing anything like that. But I applied anyway,” she says, with a small laugh. She was successful in her interview. “I didn’t expect ever to have a job that paid $25 an hour, so I was like, ‘I don’t deserve to be here at all.’”
Eliza had not yet disclosed the traumatic events she had experienced. “It was still looking at that surface level instead of getting to the root,” she explains. She had started to discuss what she’d been through with a new psychologist, but felt betrayed when they called child services without informing her first. She felt without control or choice; that the psychologist didn’t fully understand the situation. And, perhaps most significantly, that she’d been placed yet again in the eviscerating position of having to choose between being well and being loyal.
“All throughout that time, I was like, ‘Oh, this is my fault.’ Because that’s what everyone told me. So I internalised that. Then, when I came here, I understood my family should’ve behaved differently, the school should’ve done more, the mental health service should’ve done it differently … Y-Change helped me to understand that it wasn’t my fault what I’d been through, and, instead of me constantly hating myself, it helped me to change perspective and see, ‘Where were people in your life that are paid to be there and notice things for children to keep them safe, where did they fail you? And where did those systems fail you?’”
The mental health toll
The mental health system in Australia was failing, even before the pandemic, to provide adequate treatment and support to those who need it.
Almost half of all Australian adults will experience mental ill-health during their lives, and almost one in five will meet the criteria in a given year.
In 2018–19, approximately 3,189 people presented at the Austin Health emergency department for mental health issues: that equates to at least one person arriving in extreme distress every three hours, continuously, for one year. That’s one metropolitan public hospital. Even before Covid-19 hit, emergency departments were under-resourced to treat an unceasing stream of people who should have had better and earlier options for help.
Because of the continuing strength of the stigma attached to mental illness, most Australians do not seek help for symptoms either at all or until they have drastically deteriorated. However, there is no “us” and “them” when it comes to health; mental illness is something anyone can experience, not just Others. By drastically increasing calls to crisis lines and psychiatric admissions to emergency departments, especially for children, the pandemic has proved any basis for the stigma false; but will that be enough to eliminate it?
This is an edited extract from Sarah Krasnostein’s Quarterly Essay, Not Waving, Drowning: Mental Illness and Vulnerability in Australia published Monday 21 March
