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Two people in loveTom Dowse

What it's like to live and date with psychosis

'We took a romantic walk along the canal and I got paranoid, thinking he would throw me in…'

Writer wishes to remain anonymous

I live with schizoaffective disorder; it affects people differently, but for me, it's sort of a mix of schizophrenia and bipolar disorder. The type I have means I get all the paranoia and psychosis of the schizophrenia, with all the anxiety and depression of a mood disorder. 

I'm 41 now, and was only diagnosed a decade ago, despite having lived with this most of my life. It's a condition that less than 1 in 100 people are likely to get in their lifetime, and it tends to affect more women than men. Like mine did, symptoms usually begin in early adulthood.

It has made dating more difficult for me, not least because, in the past, falling in love made me feel so good that I became convinced that I didn’t need my medication. But I’ve always believed that finding the right person was possible.

I fell in love for the first time when I was 15. My first boyfriend was lovely – we were mates at school - but our relationship was difficult because I was severely depressed at the time, dealing with anorexia, and unsure of who I was. We broke up after four years because he went off to university - but we’re still friends.

My first psychotic episode happened when I was 20. I fell in love with an American boy I met at a music festival. After writing to each other for six months, I decided I’d go and visit him in the US for a few months. I was totally open with him about the mental health problems I had at the time. I told him I was on anti-depressants and he was really understanding.

Dropping medicationTom Dowse

Once I arrived, I stopped taking my anti-depressants. I was in love and so happy, I just hoped that maybe the depression had gone and it would never return. But after several months, the effects of being off the medication became apparent.

There was about a week of psychosis, where I wasn’t eating or sleeping. I started hallucinating and having paranoid thoughts. I barely know how to describe it, other than it feels like you’re asleep and awake at the same time. You’re living in a nightmare. I thought everyone was looking at me and talking about me. I started to hear voices. I thought the people on the radio were talking directly to me. It was really frightening.

My then-boyfriend was really supportive. He didn’t react or get alarmed when I said or did something strange. He just told me what was real and what wasn’t. We realised I was seriously unwell and that I needed to go home to see a doctor. He drove me across three states so that I could get a flight home, and my mum flew across so that she could escort me. 

They gave me sedative medication to get on the flight, so I was out of it. I slept all the way home, got off the plane, and slept some more. That episode took me about a year to recover from. 

The American boy stayed in touch, and it was on and off between us for two years. After that, I didn’t date much. I was in and out of the hospital for about 10 years, so I just couldn’t have coped with a relationship. 

When I was about 30, I was diagnosed with schizophrenia. Then the doctors finally decided it was schizoaffective disorder. It was a relief to be diagnosed because it gave me something to fight against. It wasn’t until I got a diagnosis that I could read up on it and understand what support I needed. 

As for my love life, it started again in earnest. I started online dating and went out with my share of idiots, like everyone does. There was one guy who started telling me he wanted to sleep with me immediately after we’d met at a coffee shop. He burst into tears when I told him no.

Then there was this guy who tried to throw me out of a moving car when I told him I had a mental health problem. We had met a few weeks before and had a few lovely dates. Then we went out for a drive and I decided to tell him about my history.

He just freaked out. He said I was "mad", and kept saying that word over and over. It was hurtful and offensive. Then he started demanding that I get out of the car. I told him it was still moving, but he was just so angry and kept saying "get out". Obviously, I didn’t see him again.

I’ve worked hard since to protect myself from that sort of situation. I’m on two anti-psychotic medications which I'm careful to always take, because I know what happens when I don’t. I’ve had maybe five or six episodes like that one I had in America, but I deal with the anxiety and fear every day.

Feeling aloneTom Dowse

When people get to know me beyond the diagnosis and understand who I am, they tend to stay around. If anyone is ever frightened, it’s more because they misunderstand what schizoaffective disorder is, rather than actually being alarmed by me.

That’s why I’ve had to look for partners who are mature and confident enough to understand it and be there for me. I don’t have the time, patience, or strength to date anyone who can’t give me what I need. 

Probably the hardest thing for me has been the loneliness. I was single from my late twenties to my late thirties, just when everyone else was settling down. That was hard, but I’m grateful to have had time to work on my mental health. What I’ve learned, and am still learning, is that I deserve to be loved and I’m capable of it. For years, I was not in a position to have that, but now I am. 

I met my current boyfriend three years ago. He volunteered to help with a film I was working on. One evening, we walked along the canal – a romantic thing to do – and I got paranoid, thinking he would throw me in. I told him and he just reassured me that he wasn’t going to. That’s how we ended up having a conversation about my mental health. He was so kind about it that I knew then he was worth having in my life.

We don’t live together and we have quite separate lives, but we adore each other. What we have is real. It’s not about passion and romance. It’s about support and emotional honesty.  

The one sadness in my life is that I am unlikely to have children – I was single and too unwell when I was younger. And now that I've met someone I fear I might have missed my window. But I’ve learned that human connection is what matters most in this life – and that’s what I’ve got now.

Everyone falls in love. People with mental health problems fall in love. I had a really difficult time when I was younger, and now I would hope that anyone else trying to date and live through mental illness knows this: it can get better. 

As told to Kate Leaver

If you have been affected by issues raised in this article help and support is available.

Originally published on 10 October 2018.