Richard Hendrie, a social worker and mental health advocate from Albury in NSW, has a history of diagnosis and misdiagnosis for his mental health conditions reaching back 20 years.
He said he was initially diagnosed with bipolar one disorder based on limited interactions with a psychiatrist and mental health experts, and was left feeling suicidal when coming off the prescribed medications.
“It was like I was in a chemical strait jacket for a long, long time,” he said.
Richard said that some of his early diagnoses were reactionary, sometimes out of necessity.
Richard Hendrie and his psychiatric assistance dog, Havoc.
“Police were involved where I was quite unwell and a significant danger to myself,” he said.
“Some of the misdiagnoses I can see in my medical records include schizophrenia, and I think that came down to a diagnosis of convenience in the triage department because it means that they could put me under the Mental Health Act a lot quicker.”
Under the NSW Mental Health Act, a person may be detained in a mental health facility for their care, treatment or control, including where their behaviour is considered so irrational that there are reasonable grounds for believing they may seriously harm themselves or others around them.
“I was almost non-verbal four or five years ago and incredibly dissociative when I was admitted for eight months,” he said.
“I was in and out of hospital for a good 10 years before I felt comfortable revealing my history of abuse. When I found a psychiatrist and mental health social worker that I was very comfortable with I ended up being diagnosed with post-traumatic stress disorder (PTSD).”
Richard said he was able to build trust through regular interactions with a psychiatrist over a number of years that led to further accurate diagnoses of dissociative identity disorder and major depression.
“It was about being able to tell my story in a comfortable environment rather than just sort of a reactionary treatment and diagnosis.”
Diagnosing in Australia
There are two systems for understanding and diagnosing mental health conditions in Australia.
The most widely used is the Diagnostic and Statistical Manual (DSM) — which is in its fifth edition.
The other, which isn’t as widely used in Australia but can be referred to, is the International Classification of Diseases (ICD) developed by the World Health Organization in the 1960s.
Dr Astha Tomar, a practising psychiatrist and president-elect of the Royal Australian and New Zealand College of Psychiatrists, said that providing a patient with a diagnosis is a complex exercise that allows a practitioner to create a treatment plan.
“The DSM and ICD are a part of many assessment tools a psychiatrist would use to understand a person’s mental health issues,” she said.
“The whole point of a diagnosis is so we can provide that person-centered care. Unless you know what the diagnosis is, it’s sometimes difficult to make a plan.”
‘Neat categories’
Each disorder included in the DSM has a set of diagnostic criteria, indicating which symptoms should be present and for how long in order to make a particular diagnosis.
A working group of over 160 mental health and medical professionals from around the world, leaders in their respective fields, contribute to the manual.
A Scientific Review Committee of experts oversees any changes suggested by the working group, also taking into account public feedback.
Miri Forbes, an associate professor in the School of Psychological Sciences at Macquarie University, said there are limitations to systems such as the DSM.
“It’s easy to misdiagnose people because the categories aren’t clearly distinct and because they have all this overlap in them,” she said.
“So, if you see two different mental health professionals, they might give you two different diagnoses because the diagnoses don’t line up well with how people experience symptoms.
“It can become quite complex because of the mismatch between what we see and what people experience, and then the way that the DSM tries to sort people into neat categories.”
Miri Forbes says there are limitations to systems such as the DSM, which tries to “sort people into neat categories”. Credit: Cristiana Fiorini
Repeated misdiagnoses
Cassandra Kinchela believes she was misdiagnosed repeatedly by mental health professionals throughout her life.
“At 14, I was diagnosed with borderline personality disorder. At about 18, I was diagnosed with bipolar one and two disorder, and I think it was maybe six months later that I was diagnosed with schizophrenia. Twelve months after that I was diagnosed with psychosis.”
In 2020, the Wiradjuri woman, who now lives in western Sydney, was dealing with seven different services, including a mental health clinician, a psychiatrist and drug and alcohol support workers.
“At that point in my life, I thought: ‘I’m done. I don’t want to keep going through the same things over and over again’,” she said.
Cassandra Kinchela says her breakthrough in her battle with mental illness came through personal empowerment and being able to talk about the abuse she suffered as a child.
“There’d always been workers coming in telling me how to live my life and how this wasn’t right, that wasn’t right … but not really giving me a way to understand it myself.”
Cassandra said her life changed when a new approach was tried by a number of services, including the NSW Department of Communities and Justice, the Sydney Regional Aboriginal Corporation and Narang Bir-rong — a family preservation service.
“It was about them coming in and helping me learn how to help myself, how to love myself, how to hold my own power, how to turn my story of intergenerational abuse into something positive and something that would help to create systematic change.”
Childhood trauma
Cassandra said it was only recently that her childhood experiences were looked at in any depth by treatment services.
“None of my childhood history was considered when I was being diagnosed, so I had a lot of misdiagnosis on mental illness,” she said.
“I would mention things that happened when I was a child. There wasn’t one form of abuse that, as a child, I didn’t suffer. But it was a very closed-off conversation.
“I was constantly doing cognitive behavioural therapy, parenting programs, and it was always going back into the same cycle of addiction.
“It took 23 years until a clinician actually asked me how I felt about myself. And then I realised, I never really held any kind of love, or self-care or empowerment for myself.
“My biological father was a part of the Stolen Generation. He grew up in a nunnery. So that stuff stayed with him and he continued that cycle.”
Cassandra Kinchela said it was only recently, after years of dealing with mental health services, that a clinician asked her about her herself, her story and empowered her.
Cassandra believes this kind of trauma needs to be better understood when people present to mental health services.
“None of the Stolen Generation stuff was taken into account. So, it wasn’t until almost five years ago now that I was actually diagnosed properly with complex post-traumatic stress disorder (CPTSD).”
CPTSD is reportedly more common following recurring or long-term traumatic events, like childhood abuse or neglect, sexual abuse or domestic violence.
Cassandra’s family history of being part of the Stolen Generations left a legacy of inter-generational trauma. It has been a long journey for her to reconnect to her Aboriginal heritage.
Now, she is looking to the future.
In April, it’ll be five years since Cassandra used drugs. She plans to launch her own organisation next year, focused on workshops aimed at creating better education from lived experience.
She also sits on the NSW Health Consumer, Carer, and Community Advisory Council and the First Nations Council in the Nepean Blue Mountains Local Health District.
‘It can take years to understand’
Following his accurate diagnosis and treatment for PTSD, in 2023, Richard started giving free mental health talks at a local brewery to share his story of recovery.
As a result of his lived experience of mental illness and contact with NSW mental health services, Richard is now serving as the Chair of the NSW Consumer, Carer and Community Advisory Council, which he describes as an ‘honour’.
Richard Hendrie has won awards for the free mental health chats he’s been running at his local brewery since 2023.
He believes the DSM is a useful tool for creating consistency for clinicians and a diagnosis can be beneficial to people seeking to access the Disability Support Pensions or NDIS. But he would also like to see alternatives to the dominance of the DSM and ICD in clinical practice.
“When people are offered 20 Medicare sessions with a psychiatrist, that’s really not a long time,” he said.
“Sometimes it can take years to build that relationship to really understand the person who’s being diagnosed.
“I started seeing a more specialised trauma therapist who put me on a ketamine program five years ago. Just being able to tell my story has been very healing.
“I’m about to finish a law degree. A guy that almost failed high school!
“I sort of pinch myself when I see how far I’ve come.”
Is the go-to guide for diagnosing mental health conditions in Australia still relevant and what other alternatives exist? SBS News podcast Is the way we diagnose mental health conditions fit for purpose? takes a closer look at the history of the Diagnostic and Statistical Manual of Mental Disorders and talks to people with lived experience of misdiagnosis.
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