‘Like many people living with bipolar ... I know my creativity is linked to the condition’

For people living with neurodiverse conditions such as schizophrenia or bipolar disorder, there is an attitudinal change sweeping society that gives us hope and a sense of optimism about the future.

I live with type 1 bipolar disorder and, like many of my “compatriots”, I look somewhat nervously from the sidelines at the shift in understandings and attitudes about complex mental illness. I say nervously because, although society at large has developed a much more empathetic attitude towards depression and anxiety, psychosis still seems to be relegated to the realms of the leper colony, and so those of us who suffer from this debilitating aspect of mental illness seldom speak about our experiences, and then only to a select few.

Mood disorders such as bipolar usually emerge in adolescence or early adulthood, but can manifest earlier or later. My first auditory and visual hallucinations – psychotic experiences – began shortly after a traumatic event in my ninth year, the same event that probably switched on the genes I carry for bipolar disorder. But whenever I spoke about those experiences to my parents, I was told I had an “overactive imagination”.

“No, your brother’s spiders were not talking to you,” (he kept enormous spiders in a glass tank), and “No, you didn’t see a little man with wings clinging to the window, it was just a bird”.

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My family lived at the time in the remote Western Highlands area in Papua New Guinea, where there was no possibility of any kind of psychiatric help. This probably contributed to my parents’ avoidance of looking more deeply into their eccentric son’s behaviours.

[  Bipolar disorder: ‘There is still such stigma and ignorance’ ]

When I was 13, after we had moved to Australia, I had my first classic bipolar episode – a short period of extremely elevated mood followed by months of profound depression. My mother took me to see a child psychiatrist, but to this day I don’t know what his diagnosis was because my mother steadfastly refused to talk about it.

My mother was and will always remain in my memory as an extraordinarily kind and benevolent parent, and I probably survived my adolescence because of her love. She was, however, like many of her generation, squeamish about mental illness, and felt shame around the idea that one of her children would be branded as “mental”. That sense of shame instilled itself osmotically into me, and my first thoughts of self-harm began in my 16th year.

During my adolescence, whenever I felt an episode coming on, I shut myself in my room and rode it out. I missed a lot of school days, and during these periods found it impossible to learn anything. As a consequence, I failed high school.

As a young adult I was too embarrassed to talk about my thoughts during mania, especially with psychologists and psychiatrists, and as a result became very good at masking the manic side of the equation. I only ever consulted specialists when I was depressed, and was therefore diagnosed with major depression disorder. Eventually, however, the antidepressants I was prescribed triggered a manic episode, and it became clear to my treating psychiatrist what was going on. This occurred in my early 40s, but it wasn’t until I turned 50, after several hospitalisations and two suicide attempts, that I achieved – through proper treatment – any lasting stability.

And yet, my life with this disorder hasn’t all been negative.

Like many people living with bipolar, I have an overtly creative mind. I am an artist, writer and composer. I know my creativity is linked to the condition, because before I had found an effective treatment regime, my artistic output followed the swings of the condition. In states of mania or coming out of depression, I would go into creative overdrive. Some of the treatment drugs such as lithium would completely switch off my creativity, and this was a major problem. It took many years before I found a medication and lifestyle plan that worked.

Whenever I speak publicly about the creative aspect of bipolar, I make the point that we mustn’t romanticise the illness, particularly for young people. Although it can light the fires of creative brilliance, it is also a killer. US psychologist Kay Redfield Jamieson has described bipolar disorder as a “quicksilver illness that can both kill and create”.

If I could go back in time, switch off the genes for this illness and live without my creativity, I would.

Like many in my position, I have often felt the blunt-force trauma of stigma. Where it has hurt most is from family members and friends. After an almost lethal self-harm event, I was told by a counsellor, as I lay in a hospital bed, that what I’d just done would possibly determine who remained in my address book. She was right. I have indeed become estranged from most family members and many friends. During my many hospitalisations I was not once visited, nor spoken to, by anyone in my family, or by others I had called friends.

Sadly, for many people with complex mental illnesses, this situation is not uncommon.

Experiences like this make shame a very difficult emotion to undock oneself from. As part of my healing journey, my psychiatrist suggested I should think of myself as neurodivergent rather than ill. Though I do now call myself neurodivergent, when I speak about my past, I use the word bipolar. I have, where possible, apologised to those I’ve behaved badly to during episodes, explaining the capricious nature of the condition. I’ve learned to accept that some people are understanding and will embrace me, and others won’t – but that is not a reflection of me.

I agree that people who are psychotic can be intimidating, but the truth is that people who suffer from psychosis are far more likely to be the victims of violence than perpetrators. Hollywood has betrayed those of us who walk this path in the most loathsome of ways. According to studies by Sane Australia (a voluntary organisation dedicated to improving the wellbeing of Australians affected by mental illness), people with psychotic mental illnesses receiving treatment are no more violent than any other sector of society. In terms of violence, young men who are not diagnosed with a mental illness but are intoxicated with drugs or alcohol are statistically the most dangerous.

[ Uncovering the myths about bipolar disorder ]

Although I cannot remember much about my own psychotic experiences (memory blackouts are not uncommon with psychosis), I do have a clear image of the fear in others’ eyes, and that has been deeply humiliating.

I have been relatively stable for over a decade now, and my creative output is the most accomplished it has ever been. I feel the time has come to share a sense of what it is like to be psychotically unwell, to add my voice to the conversation that encourages understanding and empathy around neurodivergence.

Thanks to the benevolence of a philanthropist, I was given the opportunity to create a work that takes people on a metaphorical Alice in Wonderland-like journey into a psychotic episode. It’s called The Tree of Ecstasy and Unbearable Sadness, and centres around a boy who has a tree growing inside him, whose flower is ecstasy and whose fruit is unbearable sadness. It is a work for orchestra and choir, as well as being a picture book for adults.

My intention is to give audiences, via a beautiful multi-arts experience, a felt but safe experience of complex mental illness. Fear borne of ignorance causes mistrust, ostracisation, and a plethora of festering issues. For the past decade I have had a devoted partner by my side. Through her, an ever-supportive circle of friends and the magnificent people – patients and staff – I’ve met in psych wards, I have experienced nothing less than the supremely loving kindness of humanity, the best of us all.

• The Tree of Ecstasy and Unbearable Sadness is available from May 16th