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“I was diagnosed at a very young age, about 18 with bipolar one and two disorder, and I think it was maybe six months later I was diagnosed with schizophrenia. About 12 months after that I was diagnosed with psychosis, I was diagnosed at 14 with borderline personality disorder.”
Being diagnosed with a mental health condition can come as a relief to some, but for others there are mixed feelings.
Cassandra Kinchela is an Aboriginal consumer representative for the Nepean Blue Mountains Local Health District and a member of advocacy group BEING – Mental Health Consumers.
The Wiradjrui woman is also in the process of setting up her own organisation EKU - Education, Knowledge, Understanding.
The organisation's aim is to teach people who have gone through trauma how to better empower themselves and love themselves as they are.
She has lived experience of the mental health system and a history of addiction from an early age, but she says it was only recently that her childhood experiences were looked at in any depth by treatment services.
“None of my childhood history had come into correlation when I was being diagnosed, so I had a lot of misdiagnosis on mental illness. 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.”
There are two systems for understanding and diagnosing mental health problems in Australia.
The most widely used is the Diagnostic and Statistical Manual - also know as the DSM - which is currently in its fifth edition ((DSM-5-TR)).
The other, which isn't as widely used in Australia but can be referred to, is the International Classification of Diseases, or I-C-D, developed by the World Health Organisation in the 1960s.
As Ms Kinchela's history shows, a diagnosis can change across the lifespan.
Her diagnosis of Complex Post Traumatic Stress Disorder (CPTSD) is not formally recognised in the current version of the DSM as a seperate disorder - it is only recognised as a sub-type of PTSD.
CPTSD is reportedly more common following recurring or long-term traumatic events, like childhood abuse or neglect, sexual abuse or domestic violence.
She believes this kind of trauma needs to be better understood when people present to mental health services.
“It was a very closed off conversation. For example, I would mention things like this event happened when I was a child and a lot of my childhood was various insidious events. There wasn't one form of abuse that as a child I didn't suffer. And my biological father was a part of the stolen generation. He grew up in an nunnery. So that stuff stayed with him and he continued that cycle.”
How common is a misdiagnosis or multiple diagnoses?
In Ms Kinchela's case, her family history of being part of the Stolen Generations left a legacy of inter-generational trauma and it has been a long journey for her to reconnect to her Aboriginal heritage.
Between 1910 and the 1970s, it’s estimated that as many as 1 in 3 Indigenous children were taken from their parents under past Australian Government policies - often simply because they were Indigenous.
Recent governments have acknowledged the damage done by such policies, and she says it's impossible to ignore the emotional, spiritual and mental health legacy of such experiences.
“I think the part of that that is really hard for the system itself to listen to is that it's an uncomfortable conversation. But the only way through to learning and understanding about the inter-generational trauma and the effects of the everyday cycles that it carries with it is actually having those insidious conversations in a diplomatic way and being open and transparent about it because it's just reality for a lot of us who've lived it.”
In their position statement, the Royal Australian and New Zealand College of Psychiatrists states that while diagnostic manuals help ensure consistency in diagnosis and data recording, there are limitations.
The College says the range of patient presentations and the manifestation of disease often do not fit neatly into diagnostic categories.
Dr Astha Tomar is a practising psychiatrist and president-elect of the College.
She says providing a patient with a diagnosis is a complex exercise.
“We also have to remember DSM and ICD, they are a part of many assessment tools a psychiatrist would use in terms of helping someone understand or as a doctor understanding the other person's mental health issues. And I think maybe we can think of an example of even with a GP. Let's say you go to your GP or emergency department with chest pain or breathlessness, there is never one test which would make the whole diagnosis. The doctor would sit with you, will go through a whole symptom checklist.”
Dr Tomar says the purpose of a diagnosis is to create a treatment plan.
“So the whole point of why we need a diagnosis is so we can modulate or provide that person-centered care. So unless you know what the diagnosis is, it's sometimes difficult to make a plan. But diagnosis is just one part of the care that you have to provide or you should be providing, be it as a psychiatrist or a doctor or any clinician for that matter.”
Where did the DSM come from?
It was initially developed in the mid-20th century by the American Psychiatric Association and has undergone various developments since its inception.
Each disorder included in the DSM has a set of diagnostic criteria, indicating which symptoms should be present and for how long to make a particular diagnosis.
A working group of over 160 mental health and medical professionals, leaders in their respective fields, contribute to the manual.
Finally a Scientific Review Committee of experts oversees any changes suggested by the working group, also taking into account public feedback.
Translated into many languages, it's mainly used in the United States, Europe, Australia and Asia.
The manual groups together similar types of diagnoses but opinion differs about what particular disorders should be grouped together or even included.
Miri Forbes is an Associate Professor in the School of Psychological Sciences at Macquarie University.
She explains how the DSM works in practice.
“Okay. So for example, to diagnose major depressive disorder, which we often call clinical depression, there's a list of nine symptom-based criteria. So things like low mood, like loss of interest in your usual activities, changes in sleep or appetite, those sorts of things. And if you've had five or more of those symptoms in the same two weeks, and if they're causing you significant distress or making it hard to function, then you could meet criteria for this diagnosis depression. So the DSM is a book that lays out these symptom-based criteria and the rules that are put together into about 200 different diagnoses for mental disorders.”
Dr Tomar says clinicians also have to be prepared to look at other reasons why someone may be experiencing mental health issues - including biological causes.
She recommends people experiencing mental health concerns, especially when there is not an environmental stressor, should also get a full checkup to rule out any underlying physical issues.
“Sometimes (we) have to see whether it is related to a physical health condition. And lots of times the mental health or mental illness symptoms could be related to a biological condition. Let's say asthma or diabetes or thyroid. So lots of endocrine and neurological difficulties can be expressed as psychiatry conditions. Now in psychiatry conditions, let's say depression, depression does have biological causes to the symptoms, the expression of that illness. But lots of times it's also related to the environmental stresses.”
Richard Hendrie is a social worker and holds various roles, including Chair of the Consumer, Carer, and Community Council with New South Wales Health.
He has lived experience with PTSD, Dissociative Identity Disorder [[DID]] and depression for over 20 years, with multiple hospital admissions - some for up to eight months, and has experienced misdiagnosis firsthand.
He says it was only when he felt comfortable disclosing his history of abuse that things started to get better and a more accurate diagnosis was made.
“I subsequently was in and out of hospital for a good 10 years before I felt comfortable telling a story and telling my history of abuse. And what essentially happened was when I found a psychiatrist and mental health social worker actually that I was very comfortable with and had been around for a long time, I ended up being diagnosed with post-traumatic stress disorder. So it came about being able to tell my story in a comfortable environment rather than just sort of a reactionary treatment and diagnosis, which it was previously.”
He says medical staff particularly in the public system are under a lot of pressure.
Mr Hendrie says a quick diagnosis may be needed in an emergency situation - especially if someone needs to be admitted.
“In those environments when you're working with people who are very unwell, I was one of those, you just essentially want to do whatever you can to get them admitted and get them medicated and contained. So some of the misdiagnoses, can see in my medical records previously included schizophrenia, and I think that that came down to really a diagnosis of convenience in the triage department because it means that they could put me under the Mental Health Act a lot quicker.”
Mr Hendrie says while an initial diagnosis is not perfect, it can be a step forward for people who need to access the Disability Support Pensions, or the NDIS.
But he says clinicians need to be more accountable when making a diagnosis, taking into consideration the views of allied health, friends and family and the long term implications of a diagnosis.
He would also like to see alternatives to the dominance of the DSM and ICD in clinical practice.
Associate Professor Forbes is working on a research project looking at an alternative, although she agrees that an initial diagnosis can be an important step for people needing support.
“I think that probably people's experience of receiving a diagnosis would vary really widely, right? It could be experienced as stigmatising or pathologising to say, here is a disorder that you have, rather than what you're experiencing is a normal, so to speak, a healthy reaction to the environment that you're in if you're experiencing high levels of stress or trauma, those kinds of ideas. But I think that a diagnosis can also be a really helpful thing for people because it can give a name to what they're experiencing and they can know that this is a shared experience. I think, so it can be a source of validation and support.”
If this story raises concerns for you or someone you know, you can call Lifeline 13 11 14
And In part two of this two part special, we explore the Hierarchical Taxonomy of Psychopathology, or HiTOP, an alternative to the DSM, and we'll hear more from people directly affected by misdiagnosis.
