I am a 56-year-old woman who ‘lost’ most of her twenties to undiagnosed mental illness. My family and friends didn’t understand what was going on with me and awareness of mental illness in Australia was not as advanced in the 1980s as it is today. I was finally diagnosed with a mild form of schizophrenia when I was 28 years of age.
I grew up on a sheep farm in the South-West of Western Australia, enjoying country life and my ponies. I graduated from school, then worked on the farm and had various other jobs for some years. At age 21, I went to university to study English and found my studies challenging—writing properly constructed essays was difficult and I was confused by this as I was able to write well at school. I began feeling depressed and then my parents separated, so I left university after 1 year. I then had two jobs as a nanny, but it was becoming obvious that something was not right with me.
Then the illness really began to manifest itself as I lacked motivation, became withdrawn and uncommunicative, was often rude and abrupt and displayed a lack of self-care. I usually went to bed at about three or four o’clock in the morning and slept in until two or three in the afternoon—such sleep patterns are common symptoms of mental illness. Symptoms such as paranoia and delusions becoming more pronounced as I began perceiving things differently. I believed the television and radio were sending me personal messages through their songs and advertisements—mostly not very nice messages although some could be positive and gave me brief respite from my usual ‘down’ state of mind. I didn’t trust my family and occasionally thought people were trying to ‘get me’. I remember waiting at a bus stop when some young men drove by and one of them yelled out at me ‘He's going to shoot you!’ That was how I heard it anyway, which added to my already growing fears. Unlike many people diagnosed with schizophrenia, I did not hear voices, which is indicative of how symptoms of mental illness are unique to the individual.
I was frightened to go out during the day so often ventured out at night, sometimes not knowing where I was—a dangerous way of living for a young woman. During this period, I went missing—I met someone at a bar and stayed with them for three weeks without informing anyone where I was. I was no longer aware of social obligations such as letting people know where I was. After going missing, I was referred to a psychiatrist who I saw unwillingly as I didn’t think there was anything wrong with me. The psychiatrist thought I may have schizo-effective disorder or a schizoid personality and he offered me medication, which I refused. In retrospect, I wish I had taken some medication then despite the side effects such as weight gain.
Finally, my mother described my symptoms to a consultant psychiatrist she met and he thought I may have schizophrenia and sent a nurse around to see me. I wasn’t pleasant to the nurse, so then the psychiatrist himself came to see me. Sometime after that visit, two young policemen came to my flat. They told me they were taking me to a psychiatric hospital. I didn’t think I was sick (thinking this way when mentally ill is known as ‘lack of insight’—I don’t like this term as I think this symptom is simply another manifestation of your different perception and is not a lack of anything—semantics!), so I refused to go. They were insistent and packed a bag for me, so I went with them to the nurse's car and was given a police escort to hospital, feeling confused about what was happening to me.
When first given medication in hospital, I would put the tablet under my tongue and spit it out in the bathroom. This is common behaviour and the nurses soon gave me a liquid medication instead. Within a few days I responded to the medication and my mother noticed quite a dramatic change in me. We had dinner together and had our first proper conversation in years. I spent 5 weeks in hospital and was released when I consented to having two injections in the buttocks. I continued to have injections of medication every 2 weeks for some years until I started taking an antipsychotic pill every day. On release, I was put on a disability pension, saw a psychiatrist regularly as an outpatient, and began the slow return to ‘normal’ life—something I think I am still doing after all these years. I remember seeing a woman with schizophrenia interviewed on television once, talking about how she felt her personality was ‘shattered’ by her illness which I think is a good description. I tried to ‘become me’ again and due to the unusual experiences and altered brain chemistry I think it unlikely anyone would be the same person as before.
Today I am on a daily low dose of aripiprazole and although I have had a couple of hiccups along the way, I haven’t been treated again in a psychiatric hospital. I have worked part-time looking after children and cared for my grandmother for a couple of years. I now do some mental illness advocacy and have spoken at universities, schools and a couple of Rotary Mental Health Forums as I believe educating and humanising the experience will help to foster understanding and contribute to reducing the stigma so often associated with mental illness. I contributed to a book called FASCInATE (Fremantle Arts Centre Press, 2017), which had poetry and prose written by people with mental illness about their experiences, under the guidance of a literary tutor. Although this project was not meant to be therapeutic, the act of writing and talking about our experiences was rather cathartic. The book was published and distributed throughout high schools in Western Australia in 2006 to educate young people about mental illness.
I believe that scientific research into the brain and mental illness will one day lead us to better treatments and outcomes for people with mental illness so I participate in, and advocate for, schizophrenia research. I also promote the involvement of people with lived experience of mental illness in scientific research, not just as participants but as partners, as they can give a unique perspective and create a sense of urgency.
The approach to psychiatric treatment in 1989, when I was diagnosed, was less holistic than today. Psychotic illnesses are complex diseases, often requiring different modes of care and I believe psychology is an important part of this. I wish I had been referred to a psychologist after I was first treated, to deal with the consequences of my illness both past, present, and future. Stigma, and consequent self-stigma, is an issue for people with mental illness as is the guilt associated with out-of-character things you may have done when you are sick. When responding well to treatment, there may be guilt associated with realising what fa...