With Schizophrenia, My Thoughts Can Be like Pieces of a Mismatched Jigsaw Puzzle
HEALTH, 25 May 2015
People are often afraid to ask questions about my illness. In Schizophrenia Awareness Week, I want to set the record straight – it’s nothing to fear.
‘I have schizophrenia but I’m determined not to be a victim of my illness. I live very quietly, and look forward to seeing my children every two weeks.’ Photograph: AleksandarNakic/Getty Images
21 May 2015 – I’ve battled what I now know is schizophrenia since my late teens, but it was only 12 months ago that I was formally diagnosed. I’m 42.
Schizophrenia is one of the most feared and misunderstood of mental illnesses. It affects around 15 of every 1,000 people, and in Australia the direct costs of the disease are estimated to be $2.5bn per year.
When I tell people that I have this illness, they’re often too afraid or too polite to ask questions. One friend thought it meant I had a split personality but that’s not the case. For me, schizophrenia manifests itself as distorted thinking, visual and auditory hallucinations, and delusions. It also makes me paranoid, which can lead me to think that people, even my own family and friends, are plotting against me.
When I’m ill, my thoughts feel like pieces of a mismatched jigsaw puzzle. It’s impossible to put them together in a way that makes any real sense.
My journey towards diagnosis and treatment was a long one. I held down high profile positions as a journalist and editor on national publications during my 20s and into my early 30s, but as I got older and the pressure increased, my thoughts and behaviour became increasingly erratic.
People close to me told me I needed to get help but I ignored them until the symptoms became too much. I eventually went to see my GP and told her what I was experiencing. To her credit, she realised she was out of her depth and referred me to a psychiatrist.
That psychiatrist treated me for years, trying this drug and that, but would never commit to giving me a diagnosis. I never had a name I could hang these strange experiences on. Worse, the drugs generally didn’t work and so eventually, due to the cost of treatment and the lack of support, I stopped seeing him.
During this period I lost one job after another. The illness meant I simply couldn’t perform, and because I didn’t have a clear picture of what was wrong with me, it was difficult to disclose to employers or potential employers that I was unwell. I tried once, telling a boss I had a mental disorder and he freaked out. I was eased out of that job, and back into unemployment in a matter of weeks on fairly spurious grounds.
So I was unemployed, my resumé was in tatters despite a promising early career, and I’d lost my wife, my children and the beautiful home we’d bought together in better times. Eventually I moved back in with my parents because I couldn’t take care of myself. I struggled to find employment and I constantly battled my fractured mind.
This pattern continued for a number of years. I was luckier than some – my parents gave me love and support and a roof over my head. Without them, I would have ended up living on the streets, or worse. Around 10% of people with schizophrenia commit suicide, and people with the illness live, on average, 20 years less than the general population.
It all came to a head one night when my parents were overseas. I was alone and slowly descending into psychosis. My Facebook posts were getting more and more out there, prompting private messages from friends asking if I was OK. I was listening to Joy Division’s Unknown Pleasures album on repeat and then a friend called me, trying to get to the bottom of what was going on. After a rambling three-hour conversation she convinced me to go to the emergency room at the local hospital.
That was the beginning of a new start. I was admitted to a locked public psychiatric ward, where I stayed for a month. After many sessions with the doctors, they gave me a diagnosis – schizophrenia. Finally I had a name for what I was experiencing. I was put on a new medicine, a monthly injection called Paliperidone, which has proven very effective. A community support team, including a specialist psychiatric nurse who I now regularly see, was put in place for when I left the hospital.
Twelve months on from hospitalisation I am reasonably stable. I still have bad days but they’re generally outweighed by the good. Work is still a real challenge, and holding down a regular 9 to 5 job is beyond me. I live very quietly, and look forward to seeing my children every two weeks, a highlight in what can be a lonely existence.
I have schizophrenia but I’m determined not to be a victim of my illness. It’s part of me, and I have come to accept that fact and the limitations it entails, but it doesn’t define me.
Schizophrenia, I’ve learned, might be misunderstood, but with the right treatment and support, it’s nothing to be feared.
Go to Original – theguardian.com
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