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Clare Johnston

This is a speech Clare gave to Australians for Mental Health's Speak Your Mind Event in Geelong in October, 2024.

Hi, I’m Clare, the community organiser for the Geelong Chapter of Australians for Mental Health. I want to share with you today a bit about my life, living with and around mental ill health. Because it is through our stories we find our collective voice.

I know, just like my own family, so many have been affected by the catastrophic failures of the mental health system. For us, this is a multigenerational issue, that has torn at the fibres of our family, our health and our ability to participate in the world around us for three generations. At every step of our story, there is a fundamental failing by the current system to reflect and provide the access and support that could have prevented so much pain, loss and withdrawals from the world.

My mother was the first in our family to develop a life destroying version of schizophrenia after an incredibly traumatic and lengthy interaction with the public health system and surgical malpractice that left her physically disabled for life. As an 8-year-old, it felt like my mum went into hospital and never really came out again. My mum became erratic, aggressive, paranoid and eventually, violent. I still remember overhearing the adults discussing how to help my mum, and what to do about the children. The stigma around mental health meant no one wanted to say anything above a whisper. Mum’s illness led to first my brother and then myself going to live with our father. Leaving my mum to slowly slip into deeper and deeper delusions alone.

Over the next ten or so years, my mum would start to have episodes of paranoid delusions, massive mood swings with aggressive and deeply hurtful things being said and done to everyone around her. I didn’t understand back then, but for each one of those episodes, my mum was in unimaginable pain as she would explain to me years later. The first contact with a service was in my late teens when mum had finally got sick enough to be forcefully hospitalised. I remember the panic and guilt. I remember trying to explain to the doctors calling me that mum had been like this for a long time. That please don’t let her out, help her. Something no one ever wants to have to beg to have happen to their loved one.

The episodes became a regular feature of our lives, each time hearing and seeing the terrifying changes in my mum. Our whole family ringing the mental health triage lines, begging for them to help before she got worse. Years of mum going missing for days and phone calls from police AFTER one of us had warned she was getting sick again. 10 more years of this before my mum was diagnosed schizophrenic. 10 more years of involuntary orders lasting a year and mum getting sick again. Of begging the nurses, triage, psychiatrists to just listen to us, my mum isn’t getting better, she is getting worse. All the while trying to manage the trauma her illness was causing me and my family. My mum had become someone I was desperately afraid of. With lack of consistent care, my mum was gone.

We have lived through hospitals letting my mum walk out of emergency in psychosis, my mum regularly going missing and getting phone calls from police, my mum being dragged from her home in handcuffs for being sick, road blocked by agencies refusing to even hear our concerns let alone share insights, refusal to plan evacuations during bushfires, years and years of warning them when an episode was coming and begging them to step in before it got too bad. At every point of contact with services, it had added a layer of isolation, pain and confusion for both my mother and the entire family.

For the last ten years, we have watched as my mum’s capacity just rotted away. On high level doses to stop the episodes that made her sleep for up to twenty hours a day, She sat in her filth with care workers coming and going. NDIS was involved, but no one wanted to make the call that mum needed more care and couldn’t make the decision herself. Myself and the rest of the family were told that we could not do anything due to confidentiality reasons. This continued until my mum had 5 strokes in two months. Still, the hospital released her twice, only for mum to be found on the ground unable to get up alone in her house both times. Again, our family had to fight for them not to send her home. That it was time for round the clock care. The doctors kept asking me about mum’s base level of function – I kept answering she has been sick for almost 30 years, this is her base level, short of a change to her speech. The doctors, nurses and staff still did not understand that mental illness has catastrophic effects on the whole person. But now because what had happened to mum showed up on a brain scan, they could justify helping her. She sat in a hospital for four months waiting for NDIS to adjust her care package. And has been in temporary SIL housing for a year and a half. Her situation is better, but the mum that went into hospital when I was eight has never returned.

As I am sure you can imagine, growing up through this caused a huge amount of trauma for me. I had my first mental breakdown at 13 years old after leaving my mum’s care. It presented at first as a physical illness, so after a year of testing that showed nothing, I was sent to counselling. As I battled deep depression, cutting and suicidal ideation. My counsellor helped me unwrap the layers of trauma and taught me to find the strategies to work around what my brain was doing to me. A survival technique I use to this day.

Which is lucky, because the moment I became an adult, accessing care when my brain decided I should die became almost impossible. I would routinely be told by services that I wasn’t sick enough for their help. I am still told that to this day. In some ways, that early entry into mental health care saved me. My brother instead developed drug addiction and later psychosis as he struggled to cope with the trauma and depression alone.

I have had three major break downs as an adult, all mostly alone and under huge stress loads. I was misdiagnosed in my twenties with BPD after one of those break downs. I thought I was just extra broken because the medications never worked. When getting out of bed is a challenge – getting a referral, a mental health care plan and finding free or affordable care is an incredible mountain to climb. But it is a mountain I would repeatedly drag myself up to find some counselling, never wanting to put my children through what I had faced with my mum. It was always short term as professional after professional continued to tell me I was definitely struggling but I didn’t fit their model or I wasn’t sick enough to qualify for funding. I couldn’t hold down employment, follow up or maintain care of a growing list of physical health issues, and regularly struggled to do more than meet my children’s needs. Because I was living in a huge amount of almost consistent psychological pain. But according to the care systems and most of the world around me, I just needed to try harder.

It wasn’t until in my thirties I went to uni and could access long term Psychiatry and Psychology that it was picked up that I have ADHD and complex trauma by a very clever and attentive care team. I finally gained access to the right medication for my illness. I cannot express the waves of relief, grief and anger as my brain was finally quiet and I could do the normal tasks without complete exhaustion. I realised what my life could have been if I just didn’t have to work so hard to do the basics. I had been in some sort of mental health care all of my teens and on and off throughout my adult life. Why had no one noticed?

Unfortunately, the access to care ended when I burnt out due to stress of covid, sick kids and the housing crisis in Brisbane. No uni meant no medication, no doctors, no subsidy for the house I was renting. The knock-on effect of me getting sick was catastrophically life destroying. Again. Every system I was engaged with was now out of reach. We were closer to homelessness than at any other point in my life. I was alone, overwhelmed, sick, and carrying a deep disappointment that again, my illness had meant I couldn’t fulfill my dreams and had put my children in a precarious position. I reached out to every single agency or service trying to find a way out. It was Friends that stepped in and helped me move down here to find housing we could afford.

It has been almost two years since my children and I moved to Geelong, I still cannot access care or medication. I was told I need a report that cost over a thousand dollars to even hope to get the medication that made my brain quiet. I found my way around that hurtle after the first year. I am categorised by that report as having significant deficits, but not enough to access NDIS or DSP. I was told by a GP that because that medication is an amphetamine and I live in Norlane, they worry I will become an addict. I hate to break it to them, but my brain not functioning correctly is a pretty high risk to mine and my children’s wellbeing.

A psychiatrist costs between $400 to $600 per session. Only a psychiatrist can prescribe my medication. I do not have that kind of money. So again, I am trapped. Over and over. By a system that just does not respond to the reality of life with a mental illness. My life has been routinely and catastrophically halted because I could not find access to mental health support or the right medication due to being low income because I could not hold down work or stay engaged in study or volunteering – because I could not find access to the medication or support- this cycle has been the majority of my adult life. I know that my story is one I Share with so many Australians.

The fight for access to supports doesn’t end with me

With each of my children, starting school was the first sign they operated differently than their peers. Throughout my own battles with mental illness, I have fought hard for supports for them. Every time I approached their schools and asked for support, I was bluffed off, told they didn’t need it or they didn’t realise my kid was struggling – neither child has ever been a behaviour problem, making them easy to ignore.

My daughter, I have raised my concerns and asked for support at four primary schools. Always told they didn’t realise she struggled as she refused school and had regular anxiety attacks. I am very grateful to our latest school, they heard me!! My girl has their support to be her best self, to process and learn the way every kid deserves. That doesn’t mean there aren’t hard days, because there are plenty. But I know, and more importantly, she knows there are people around her to help. She has a diagnosis of ASD and now processing through an NDIS application – that we need a support worker to navigate – there is a fundamental problem that a support system for people living with disability is so complex that we cannot access it without professional support- but my girl is at least on the bumpy, barrier filled path to mental health and wellbeing support.

My son has not been so lucky.

I have fought, argued, cried and begged for supports for my son his whole schooling life. I helplessly watched him slip into a dangerously deep depression. From 11 years old. You see, my son is autistic, but because a paediatrician made flawed call when he was 7 – that he hated school and just had sensory processing disorder, I couldn’t get even the most basic supports for him. He was in a world he did not understand, with all of the social rules changing and trying his best to do the right thing. I have had to remove my son from three high schools because they refused to make allowances that enabled his safety, letting full grown adults abuse him at the school gate at 13. He was assaulted multiple times on school grounds by older, bigger students – the principle congratulated my bleeding son on taking a punch well. He was scared and bleeding and still worried for the others involved. He needed compassion and safety. Which was denied at every single point from the very systems that are legislated to provide it.

As we tried to access counselling, multiple professionals have broken his trust, through biased, uncaring responses to his feelings and the things he has lived through. Comments about his body, his choices to protect others, and assaults committed against him being blamed on him is just a few of the kinds of things professional mental health support people have said to him. Every single time I manage to convince someone he needs support; it never lasts longer than three months. Even after he disclosed that he had taken to standing in front of moving vehicles because he wasn’t sure her wanted to be here anymore. He received three months of intervention treatment from jigsaw. All I could do is teach him what I knew from my own journey, as the consequences of my illness kept me from working – so could not afford to pay for the supports my son needed. I am very proud to say my boy has worked hard to learn his different brain and is doing brilliantly. He is still without diagnosis, or any professional supports in any part of the mental health system. And he is about to become an adult, ageing out of services including access to CAHMs and a formal diagnosis.

I want to acknowledge the mothers in the room today who have lost their sons to suicide. I am painfully aware that your journey and mine share to many gut-wrenching similarities. I share your determination to make the lives and wellbeing of our boys matter.

The mental health system is undeniably broken at every point of contact. But our men, our sons, our brothers are so woefully failed by this current approach that even entry to any care is barred, laden with bias and stigma. This profound failing has end, because every one of us deserves meaningful access to mental health support, including our men.

I am doing better now because of community support. Of finding a group of people in Geelong who give me the space to manage my symptoms my way and the courageous kindness of genuine understanding when I struggle. I can stand here, delivering this speech in my paid role because of community, not because of any part of the mental health system. I am very honoured to say that community has enabled me to fulfill my dreams of being a community organiser and connecting people to work together to address the needs and problems in our individual lives

I stand here sharing my family’s journey knowing that the way forward is together. Through everything my family has survived, every step of our journey through the minefield of our mental health system, the place we have continuously found strength, support and understanding is in community – through connecting with incredible people who make the battle of mental illness a team effort. It is this kind of community strength that is Australians for Mental Health. I extend my invitation to you to join us and help grow our Geelong Chapter community into the formidable force of change in mental health and wellbeing that so many of us are desperately needing.

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