Getty Images

This is what it's like to have a schizoaffective disorder

From dark times to MBE, Jonny Benjamin tells us his story.

08 Oct 2019

At the age of 20, Jonny Benjamin was diagnosed with schizoaffective disorder. Despite not knowing exactly what it was and creating personal definitions for it, the process of figuring it all out took 10 years to fully understand.

Although not spoken about widely enough, according to mental health website, Rethink, 1 in 200 people develop schizoaffective disorder in their lifetime. Benjamin is one of the leading figures changing the perception of those with mental health illnesses.

Tell us about your experience with a mental health condition

It started in mid-teens when I thought I was hearing the voice of the devil, which looking back now relates a lot to my sexuality, because I’m gay and I was struggling with that and I come from a Jewish family. I wasn’t telling anyone what anyone what was going on. I was trying to suppress it all, went off to University and it all came out at University really.

I was studying drama. I’d always been really interested in drama and acting growing up, particularly when I started struggling in my mid-teens theatre was like my way out. You know, being other characters, plays and stuff, that was my way out of my own head, to be other characters.

It was all really quick. I had a breakdown, I went into a psychiatric hospital, I was given this diagnosis and put on medication and nothing was really explained to be honest, to me or my family, so we felt really lost.

People would come to the hospital and no one really knew what to say. My dad started to have chats with me in the car, because it was easier not having to look at each other and we just talked more freely when we were sitting side by side in the car when he was driving with my mum. My mum started talking to me via different books and TV programmes. She had mentioned a book about mental health or TV documentaries about mental health and that was our way of starting to talk about it.

I’d never heard of schizoaffective disorder until I got that diagnosis and I’m noticing that more and more people are being diagnosed with it, more younger people. Basically it’s a combination of schizophrenia and bipolar disorder and schizophrenia for me, it’s losing touch with reality, like hearing voices, believing that cameras are watching you, that type of thing. With bipolar for me, I didn’t really have the massive highs that people get with bipolar. It was mostly the lows, well it was really low and the affective bit is the mood disorder attached to it.

What would you say is the most common misconception about schizoaffective disorder?

I think it’s that people are really unwell for life, and they never ever get better. Well, that’s what I thought when I was a kid. Particularly like the schizophrenia bit, when the psychiatrist said you’ve got schizophrenia and bipolar disorder, like wow, I just didn’t think that people ever got better or managed to lead a typical life. I’ve met so many people now with schizophrenia, schizoaffective who are out there living, working. It can be managed with the right treatment and medication.

I think as well, I think people think schizophrenia is split personality, but schizophrenia is more about losing touch with reality, hearing a voice or being really paranoid that people are watching you.

What has helped you deal with schizoaffective disorder?

I’m still on medication, I still have therapy. I think therapy has been a massive help to me, so I have something called CFT, which is compassion focused therapy, and that’s really really helped me. Compassion focused therapy is all about developing self compassion for yourself, for your symptoms, more compassion for other people, so therapy has been a massive help.

Mindfulness has been really helpful for me. I know it’s not for everyone, but mindfulness has been a big help for me. Things like meditation and yoga really helped to I guess create some more peace of mind for me, because the reality is, I still have relapses. Today the relapses are different because I’ve got the tools like the mindfulness via meditation and yoga , so when I have relapses it’s nowhere near as bad as it used to be.

What more do you think can be done by the government?

A lot is about funding, but it’s also about changes in the system. There can be a lot of changes within the system, so we have a mental health system that’s split. We’ve got CAM’s, the Childhood Adolescent Mental Health Service and then that ends at 18. When someone is 18 they’re just chucked out of the service and they go into the adult mental health service, and so many young people fall through the gap between CAM’s and adult mental health service, which is such a crucial age and I think the whole system needs revolutionising.

In Australia they changed it so young people’s mental health services finish at 25 and it’s a smooth transition from young people’s mental health services to the adult mental health services.

You’re always contributing to raising awareness about mental health, what have you got coming up next?

We published the first book already, then we’ve got another book coming out which is going to be called the book of hope. So the first book that we published was kind of focused on my story, and this book is going to be contributions from all different people from all different walks of life on how they found hope, how they managed to overcome really difficult and dark times, because that’s something that’s really lacking.

For more mental health related news and feature, read more here.