What it feels like to have schizophrenia
The first inkling that something was wrong came at age 21. A helicopter was circling outside my home, watching. I was convinced they would come for me. I had developed a belief that I was a fugitive on the run, Britain’s most wanted criminal. It’s a belief that persists today. If I’m alone and hear a siren, my heart stops.
Televisions and radios began to speak in riddles directly to me, via their script writers. One song on the radio I remember clearly is pop star Rachel Stevens’ Sweet Dreams My LA Ex. I thought she was talking directly to me, and saying: “Sweet dreams because you’ll be in prison soon.”
At one point I had the coil fitted, and I believed it was a spy device fitted by MI5 to monitor me. Perhaps the most unusual belief I had was believing that everyone in the world could fly. I was convinced that they were keeping it a secret from me. It was mortifying to feel like the entire world had turned against me, and too terrifying to do anything other than curl up in bed.
There’s a common misconception that schizophrenia means a split personality, but in fact the split is with reality. You believe, see things and hear things that aren’t really there.
It took a while to be seen by a doctor. Eventually, after my mum found me looking for spy devices in the spare room one night at 3am, she decided she needed to take charge. The next day she took me to our GP surgery. There were security bars on the window and I thought they’d been placed there to let me know I would soon be behind bars.
The GP was understanding. He told me my “beliefs weren’t quite right” and within two weeks I was seen by a psychiatrist as an outpatient at the local psychiatric hospital. He prescribed antipsychotics and sleeping pills.
The sleeping pills helped me feel calmer, and less terrified. I rarely sleep when I’m in the grip of a psychotic episode. As the two week prescription of the sleeping pills came to an end, the antipsychotics took effect.
At this point I’d been unemployed for three months since leaving my job as an assistant at this newspaper, aged 22. Mum started to nag me to get a job.
I took a job working in New York for a photographic agency, but I only lasted as long as my three month antipsychotics prescription. I was soon back in England, living with my mother and my younger sister again.
If you think psychiatric diagnoses are readily handed-out these days, you’d be wrong. It took over 10 years for me to get a diagnosis of paranoid schizophrenia. My first diagnosis was psychotic depression. Next, paranoid psychosis.
Then bipolar disorder type 2. Then I was hospitalised at 29, and there was a tug-of-war between delusional disorder and paranoid schizophrenia. I’ve joked at a conference I was speaking at, for the Time to Change campaign, which is about getting people talking about mental illness, that: “It’s no wonder people with schizophrenia are commonly thought of as being in two minds – even the experts don’t agree on schizophrenia!” It got a laugh.
In reality, living with schizophrenia is no laughing matter. My work history is chequered as I rarely last more than seven months in a full-time job before my anxiety returns with the stress of the daily grind. I’m resigned to just doing what I can under my psychiatrist’s advice, though I did manage to hold down a part-time, remote job in my mid-30s and was able to squirrel away enough to buy a lovely bungalow in Staffordshire near my family, where I now live with my partner, Paul.
Today, I work on my writing about one or two days a week but my main income is universal credit and PIP (personal independence payments) for people living with a disability.
Schizophrenia is more common than you think
According to Rethink Mental Illness, one in 100 people have been diagnosed with schizophrenia. Some have hallucinations – tactile, auditory, or visual (or all three). Some people may experience these and never come into contact with mental health services. Those that do don’t always prosper. A study in The Lancet Psychiatry found that people diagnosed with schizophrenia will have their lifespan slashed by 15 years. This is partly due to the side effects of medication.
The late brother of Alastair Campbell, Donald, had schizophrenia. Alastair has also suffered from psychosis, one of the main symptoms of schizophrenia.
Alastair says: “Donald died at 62 and I am also in no doubt that he is one of those who lost part of his life because of the side effects of the drugs. They helped give him an okay life, but also shortened it.”
Others will recover symptom free. Others have dips and good days – remaining much the same throughout their lives. And some deteriorate. A psychiatrist in Edinburgh, Prof Stephen Lawrie says: “Around 5 per cent of the population will experience psychosis in their lifetime. Some recover without treatment. Some deteriorate, and another 5 per cent will kill themselves.”
I can relate to the latter, as I almost slipped away to suicide.
I hit a low in April 2009. I was 29, and it was a sunny April morning, when I made an attempt on my life. Still, not a week passes by that I don’t feel lucky to have survived.
Stress had been building. I’d been working as a fashion journalism lecturer in the south of England but lost my job when students found a campaigning article I had done about living with psychosis online.
The college fired me, saying I’d lied about psychosis on my application. I didn’t think they would hire me if they knew. I was broke, with no work and nowhere to live. Eventually I found a squalid flatshare in Birmingham, 30 minutes from my family. My friends were all back in London, where I had previously lived for a decade.
I couldn’t sleep and I ran out of meds. A friend who was anti-psychiatry convinced me I didn’t need them. I tried to access help at my new GP surgery, but I was unable to. The place was so chaotic, I just left.
I was alone and up all night, for two weeks, researching unsolved murders online and placing myself at the centre of them, believing I’d committed them. There was no safe space. I went to the shop in the morning and bought myself a bottle of bleach. I hurried home and I drank a mug full so I could die before the police closed in.
As I sat on the bed I noticed the spring sun and it gave me hope. I suddenly thought there might be some charities who could help wanted criminals like me get a second chance. I was only 29. I dialled 999. I’m still not sure how I survived or if the bleach by a mug could have killed me. As I lay in hospital on a drip, I thought I was dying, but I survived.
Recovery
Experts are still unsure what causes psychosis – each one having a different opinion. Stress, a genetic predisposition, childhood trauma, cannabis – I can tick all the boxes, so I believe it’s a combination of all of these. Growing up, my parents had an acrimonious divorce when I was 10. It was violent at times. Mum subsequently started drinking heavily. Then, I had a job as a fashion assistant at this paper.
It was a dream at first, but I couldn’t cope with a promotion and started to smoke cannabis to relax in the evening. It triggered my psychosis. At the time, I couldn’t even rent a VHS without thinking it would somehow make me gain lots of weight. It was also around then I had that coil fitted that I thought was an MI5 device.
Over the course of two decades living with psychosis, I’ve tried hundreds of ways to stay sane, sometimes dubious ones (the most bizarre was probably future life progression, where a therapist delves into your future).
It’s really helped me to recover to have a stable, loving partner in Paul. We rekindled our childhood friendship on Facebook during lockdown. When we first met as kids in 1993, we went pony trekking together and Paul’s opener when we reconnected was that he had only gone riding because I was doing it. He had me straight away.
We met shortly after and have hardly spent a day apart over these last three years.
Paul is now tetraplegic and in a wheelchair full-time after he was in a car accident aged 21. So it’s nice we can support each other and I know I’m not alone. He’s taught me a more carefree approach to mental illness which helps minimise anxieties. We’ve decided we’re happy as a cat-family – it’s us and our two adopted Tom cats, Caspar and Winter.
When I was first diagnosed, I thought I shouldn’t have babies in case I murdered them. I’m more clued up today, and I know that’s my delusions speaking, but I’m exceedingly content with my decision – I won’t pass down schizophrenia for a child to live through and I don’t have the added burden of responsibility.
I’ve more time, money, and no grey hairs. I live a nice, relaxed lifestyle and I would sooner have my books archived in the British Library as my legacy, than a child who hates me because I can’t cope.
Overall, I’m glad I’m stable on medication. I see my psychiatrist every three months, and I am due to see a therapist on the NHS again soon. It was the compassion-focused therapy I had on the NHS 10 years ago that taught me how to live happily.
It teaches patients to be kinder to themselves, and to seek out positives. I’m a bit of a Pollyanna these days – always looking for silver linings. As I look out over the beautiful garden at home, which backs onto woodland, I feel a sense of peace and calm that my medication helps with. Schizophrenia and being happy and content, for the most part, doesn’t have to be an oxymoron.
Erica is author of two self-help books for people with psychosis, both available on Amazon.
