As a child, his grandmother nicknamed him Sunny because he was always so bright and happy. On leaving primary school, he achieved a “band 6” in both maths and English. His mother was optimistic; perhaps he would be a scholar like his grandfather. It wasn’t until his mid-teens that the signs appeared. At 15, Sunny dropped out of school. At 16, the local mental health crisis team described him as “prodromal”. His mother had to Google the meaning: “relating to or denoting the period between the appearance of initial symptoms of an illness and the full development”.
At 17, Sunny decided he was lame in one leg and took to walking with a cane. The doctor could find no physical cause for his sudden disability. He was sent to Westmead for psychiatric testing and found to be sane and sent home again.
By 18 he was self-medicating daily with alcohol and cannabis. The feeling of being surveilled by malevolent forces was so invasive that he dismantled the TV remote control in a desperate effort to disable the listening devices hidden within.
At 19, Sunny was couch-surfing and spending nights in Camperdown Park. He regularly took himself to the emergency department at Royal Prince Alfred where he was diagnosed with “drug-induced psychosis” and left to sleep it off.
At 20, he was offered some supported accommodation specifically for the mentally ill, although no health professional had offered a diagnosis. (“These days, we try to avoid labelling,” a doctor told Sunny’s mother.) One night, Sunny got into a fight with another resident about the volume of the music she was playing. The police were called and Sunny was charged. The court ordered that he enter into the Early Intervention in Psychosis program at the local community health centre.
After more than a year of so-called intervention, including regular consultations with a psychiatrist, Sunny was discharged into his mother’s care with a diagnosis of “adjustment disorder”. She and the family tentatively celebrated his 21st birthday, trying to believe that Sunny’s troubles were simply a case of an over-sensitive young man adjusting to adulthood. Not long after, Sunny walked into the Newtown police station and told the sergeant on the desk that he had committed so many crimes that he had to go to prison immediately. The police arranged for his escort to the Marie Bashir mental health unit at Royal Prince Alfred where he presented as “floridly psychotic” and was scheduled.
Sunny hated being locked up and begged the psychiatrist for temporary leave. Late one afternoon an inexperienced nurse was given the duty of taking him for a 15-minute walk outside the unit for a “smoko” and he took the opportunity to make a run for it.
For a week Sunny went missing. In that time, while roaming the streets late one night during a psychotic episode, he used his cigarette lighter to set fire to a domestic rubbish bin. The next morning he woke up feeling terrible, rang his father and asked to be taken back to the Marie Bashir Centre where he was readmitted. For the first time, Sunny was administered a powerful anti-psychotic drug called Paliperidone. When his mother went to visit she felt it was the first time in years she had seen him close to normal. At last, she thought, he was getting the medical attention he really needed.
On discharge four days later, the police were waiting for Sunny at the exit door. He was taken to the Surry Hills lock-up for the night and appeared in court the next morning where the magistrate took less than a minute to send him to Silverwater remand centre.
When his mother collected his discharge paperwork from the hospital she saw a word she’d never seen before: “schizophreniform”. Again there was no explanation from medical staff. Again she Googled: “Schizophreniform disorder is a type of psychotic illness with symptoms similar to those of schizophrenia, but lasting for less than 6 months. Like schizophrenia, schizophreniform disorder is a type of ‘psychosis’ in which a person cannot tell what is real from what is imagined.”
The lawyer told Sunny’s mother to prepare for $10,000 in legal fees and at least $3,000 in forensic psychiatric reports if they were to have any chance of getting bail for her son. A consultation with the state’s foremost forensic psychiatrist, Olav Nielssen, was arranged. Despite Sunny slurring and yawning throughout the video-link interview due to being massively over-medicated – Long Bay’s systemic approach to handling psychotic inmates – Nielssen immediately recognised the symptoms of schizophrenia. By the time Sunny was released, nine weeks later – which had included 10 days in solitary confinement to protect him from predatory prisoners – the private hospital his mother finally felt compelled to pay for described his condition as “catatonic”.
Sunny was 22. It had taken seven years, countless ED presentations, four hospitalisations, two years of early intervention, 13 case-workers, five psychiatrists and one lawyer to finally get the right diagnosis. During that time Sunny suffered from hallucinations, paranoia, voice-hearing, panic attacks, anxiety, depression – (he spent an entire year when he virtually never left his bed) – and substance addiction. Now, at 25, he is finally on the right medication and has the support of a psychiatrist and a psychologist. He longs to return to finish the apprenticeship he started at 17 but, given his years of being out of the workforce – not to mention his criminal record – it seems unlikely he will ever work again. It is pointless trying to explain to any potential employer that his only crime was the “crime” of schizophrenia. And anyway, Sunny doesn’t like to talk about it.
And neither do the families of people with schizophrenia because just the word itself is enough to scare the neighbours – the condition being practically synonymous, in many people’s minds, with violence. (It’s the kind of family tragedy, as one mother said, “that is casserole-negative”.) And neither do health practitioners want to say the word – “We don’t like to label young people”; and nor do mental health services or policy makers want to address the needs of what the 2012 UK Schizophrenia Commission described as “the abandoned illness”.
But I feel compelled to talk about it because I am Sunny’s mother.
Facts about schizophrenia:
It is a young person’s illness: a diagnosis is generally made between the ages of 18 and 30
The vast majority of people with schizophrenia are not violent; in fact, they are five times more likely to be the victim of assault
In Australia, up to 70% of people who have a first episode of psychosis will have another episode within two years
If you are diagnosed with schizophrenia, within a short time you will not be participating in work or education, you will have a high risk of homelessness, you will be much more likely to end up in jail, and your anti-psychotic drugs are likely to cause weight gain, drooling, loss of libido and loss of memory
Life expectancy of Australians diagnosed with schizophrenia is reduced by 32 years
Some links:
One Door Mental Health is the new name for the Schizophrenia Fellowship of NSW
For families in Australia there is Carer Gateway available
