Jonny Benjamin reflects on managing schizoaffective disorder - The Mind Map
By Sue Bennett

Jonny Benjamin reflects on managing schizoaffective disorder

“Don’t feel embarrassed, don’t feel ashamed. This is human and it’s actually normal”

Published 05/05/2018

In 2008 a young man called Jonny Benjamin stood on Waterloo Bridge, about to jump. A stranger saw his distress and stopped to talk to him – a decision that saved Jonny’s life. Today Jonny is about to release a book about his journey to find The Stranger on the Bridge and his experiences living with schizoaffective disorder. After the viral #FindMike campaign reunited Jonny with that stranger – Neil Laybourn – the pair formed a friendship and together they now travel the globe with charities to campaign for mental health awareness and suicide prevention. Jonny was recently awarded an MBE for his campaigning work and is also a film-producer, public speaker, writer and vlogger – check out his YouTube channel on living with schizoaffective disorder. We caught up with Jonny to talk mental health, his love of Nina Simone and of course, feeling good!

Hi Jonny, what are you working on at the moment?

My big focus at the moment is the book I’ve just written. We’re also doing a second book that’s full of stories from different people, their artwork and pieces on the subject of hope and recovery. We’ve also been working on our schools programme Think Well that launched two years ago. That’s been happening a lot within secondary schools for two years now, but this year we’re launching a primary school programme and a parent’s programme as well. So my focus is schools – that’s what I’m really trying to work on at the moment – to try and get mental health taken more seriously in schools.

Mental health education is something that is very close to your heart. Why do you feel it is important for young people and adults to have that knowledge and what do you think we can do to begin to implement change?

Well, I just know from my own personal experience, and from talking to so many other people that if there was more mental health education in schools, if there was more help, support and guidance and advice that it would have stopped me from getting to the place it went to when I was 20. I was really ill and I was suicidal. It would have stopped other people from getting to that place as well.

We know that early intervention makes a big difference. We know that three quarters of all mental health issues begin in adolescence. So it doesn’t make sense why we don’t do more in schools, colleges and universities. It’s like we’re missing a big piece of the puzzle really here.

You know we focus so much on physical health. Just recently there has been so much on the news about obesity and obesity in young people – and absolutely that’s incredibly important, and so is mental health, so is young people’s minds but it’s never been given the focus it deserves really, but it’s about time we did because we’re seeing more and more young people that are asking for help. Young people are struggling and again we know we’ve got massive problems with CAMHS the Child and Adolescent Mental Health Service. They have a huge waiting list. The whole system is ending at 18 people are cut off from help at 18 – just because you’re 18. It’s not good enough, it’s simply not good enough. We need to be doing more.

In terms of implementing change it has to come from the top. People like the Department of Education and Ofsted. On a positive note they have their green paper – they published this green paper on young people’s mental health and that will lead to some sort of change in the education around young people’s mental health, but it needs to happen now, we can’t keep waiting for it.

Mental Health First Aid is a programme that enables people to signpost students, employees, friends and loved ones to sources of help when mental health issues arise. It also provides a valuable communication process that is often missing when we encounter mental health issues. Do you think Mental Health First Aid would have altered your journey?

Yeah massively. When I was growing up I didn’t understand what mental health was. I just didn’t understand what that term meant if I’m honest. The one thing that I got when I was at school when I was 17 was that they played us the film One Flew Over The Cuckoo’s Nest and that was it in terms of learning about mental health in any way – that was my reference to it. Then I saw the film Girl, Interrupted. Both films are not very positive representations of mental health. I just had no concept of what it meant to have a mental health issue or what to do. I actually went to my doctor and thankfully my doctor was really good and took it very seriously. He referred me onto CAMHS but I didn’t know what to do, I didn’t know where to go and again I wish I knew about mental health charities and organisations that I now know exist. There was just never any signposting about where to go or what to do.

Mental Health First Aid wouldn’t have just helped me, but the people around me. When I was eventually diagnosed and everything came out, the people around me just had no idea what to do or how to respond and it was very difficult. It made relationships difficult actually with family and friends and not knowing how to deal with it and what to say and the language. We need support for the individual that struggles, but also the people around that person as well. This is why we are doing our work with parents and teachers in schools because we all need to be on the same page you know. We speak to parents and they say ‘we don’t know how to talk to our children about mental health’ and what language to use or how to bring the subject up. There is kind of a disconnect.

Has talking been a big life challenge for you and over the course of your journey?

Yes, just the whole thing of talking, communicating, being open and honest. That’s been one of my biggest life challenges – talking and being honest and asking for help when I need it. I still struggle and I still have relapses. I talk about it more now, I do it’s different, but it’s something that I’ve really had to overcome – that shame and that embarrassment. It took me years to overcome that and I know I’m not alone. Everyone that I’ve spoken to about their mental health talks about the shame and the embarrassment which makes me sad that in society we still have this stigma. It’s getting a bit better but we still have this big stigma attached to mental health.

It’s something I see all of the time. We go into schools, businesses and the NHS. We do a talk and at the end of the talk people will stay at the end; they will come over and say ‘no one can know this but I’ve got depression, or I have schizophrenia, or I have bi-polar and I can’t tell anyone and if I tell anyone I’m scared of the reaction and I’ll lose my job’. That makes me really sad, particularly in the NHS I’ll have mental health nurses or just people in various roles come up and say ‘I’ve got this’ and they’re working within healthcare and they still can’t be open and honest – I think that’s incredibly sad that you can’t even be open.  We all know if it’s a physical health issue like diabetes people wouldn’t have that shame and that stigma but it’s still there for mental health.

Listening to you, it seems that the process of both talking and being heard is key to maintaining good mental health?

Absolutely. It’s one thing talking but another thing is to actually be heard. I talk about this in the book. It can take a hell of a lot of courage to go to your GP and talk about your mental health issues, but if that GP doesn’t listen or doesn’t respond well then that can take you back for a long time, or even make you give up altogether. Because you finally managed to build up that courage and then you’re knocked back. The notion of being listened to is one thing that is missing within society even. I guess because of the work I do I’ve trained myself to be a really active listener.

People often come up and tell me things and I used to jump in and say ‘Maybe you should try this’ or ‘I have that’ and now I’m practising the whole act of just sitting there and listening, holding the space for someone and sometimes that can take an hour or two hours but it can just be so valuable for someone, particularly if they’re talking about their mental health struggles for the first time. I’m aware to not jump in. Understandably if someone has a problem we want to solve it. We want to help them but I think sometimes the biggest help can just be that, just listening. People like The Samaritans, that’s what they are there for – they are there to listen. They are not there to give advice, they are there to listen and that listening hopefully guides the person to where they need to go. Active listening is so key.

How important has music been to your mental health?

Music has been my lifeline. One of my lifelines I’d say. Probably with talking – equal to talking. Music is a lifeline. When I was going through my most difficult period growing up I had a playlist called The Blues but it was what got me through. I listened to lots of music like Radiohead. Some of it could be quite dark and difficult music but for me when I was in a dark place that was what helped and now that’s changed – I mean I still listen to Radiohead, but now I have a playlist with uplifting songs on it. It’s kind of a self-care playlist and that is music that I can relate to in terms of overcoming and getting stronger, getting through. Music is has been my lifeline, it’s always been there. For every part of the journey there’s been a song, a playlist or an artist that’s just helped me through. I started to write my own songs as a way of coping as well in my teens all the way through to the present day I still write songs actually and it helps me. It’s an outlet for me as it is for many other people.

What three songs to lift your spirits?

The first would be Nina Simone’s Feelin’ Good. Every time I hear that I reconnect with feeling good I guess! It does lift my spirits. The second one would be Florence and the Machine and Shake It Out. The words are ‘it’s hard to dance with the devil on your back, shake it out’ it is about shaking away the demons literally. Third one, I’d actually do another Nina Simone song, she’s actually been a big part of my life. There’s a song called I Wish I Knew How It Would Feel To Be Free. It’s a beautiful song that’s kind of split into two. The first bit is about feeling restricted and lost and then the second bit is about feeling free and it’s a really uplifting song.

What would constitute the perfect day for you?

Wow. I would say it would be waking up in nature. I love going camping because it reconnects me with nature and I love that feeling of waking up in a tent surrounded by nature with the birds singing and no mobile phone signal is quite nice actually to be honest. A bit of a digital detox. Going for a long, long walk somewhere by the sea that would be pretty cool. Maybe going into the sea – I love swimming in the sea. To be honest I sometimes spend full days like hiking, walking, swimming. I’d happily go a full day just doing that. Getting a bit lost – I’m happy to get a big lost somewhere and have no direction and just wander and obviously I have to have my music there and play my music while I’m walking. Also having a diary there where I can get all of my thoughts down. I think that would be really lovely. Maybe that’s the day time and then afterwards seeing people, some friends at some point. I do get quite lonely actually. Sometimes I really need my space but if I have too much time on my own and I get really lost in my thoughts and it can be challenging. So, yeah meeting up with friends, going for a walk, a dinner or just going to see them in some way and spending time with them and yeah I think that would be kind of a perfect day for me.

For what in your life do you feel most grateful?

People. Family, friends and support. I’m very lucky. I’ve got amazing support around me. When I do struggle with my mental health and I have a relapse you know I still have that support it doesn’t go away, and for that I think I’m most grateful because I know not everyone has that.

Complete the sentence. “Ace mental health for me means…”

Good mental health for me means looking after it and tending to it. So by doing things such as mindfulness, relaxation and self-care and talking about it. Yeah, just general looking after it really. I know that if I look after it, it’s in much better shape just as with your body. Different things work for different people. I find that working on self-compassion and my relationship with myself for me can be really important because I can be very hard on myself, as many people can, but I really can be very self-critical and working on self-compassion, being kind to myself and not judging myself particularly when I’m struggling is really helpful for me. It makes a difference.

Do you have any quick tips for staying mentally well? What would you recommend?

A quick tip to maintaining good mental health, for me, would be mindfulness and I try to fit it into my day. Even five minutes of just stopping, pausing and grounding myself, taking a breath, doing a body scan which is going through my entire body from somewhere deep upwards, just kind of scanning through the body and trying to release any tension – just breathe into it. That for me sort of calms me when I’m focussing on body when I’m focussing on breath that is a really calming and a quick thing for me.

Who was your best friend at university and what was the funniest thing they did?

My best friend at university was Jane. We lived together and in our kitchen we had cupboards and on the top shelf of the cupboard with all of the food there was this funny smell that was building and building and building. Every time you opened the cupboard you could smell it and eventually it filled the kitchen. We were like ‘What’s going on? Where is this coming from?’ It was horrible and eventually we were looking all around the kitchen trying to find it and we happened to look at the top shelf of that cupboard and there was this jacket potato that she had left there for months and months and months and it was like it had its own forest. It was so mouldy – it’s was the mouldiest thing I’d ever seen. We just found it very funny. I can’t even tell you it was the most disgusting smell, and the look of it! Happy, happy memories!

What do you eat to stay healthy?

If I’m completely honest I’m not very good at maintaining my health through my diet. I’m out and about a lot and I tend to grab stuff on the go. One thing I always do is cut out caffeine. I cut it out completely a few years ago because I wanted to see if it had an effect on my mental health – and it did. I used to have coffee and tea all of the time every day but stopping it has made me feel like I have a lot more energy. I do think it affects my moods. After I stopped drinking caffeine my moods definitely improved. If I could then I would be more healthy. I would cut out having processed foods on the go and I’d have more home cooked fresh sorts of foods.

What advice do you offer friends when they are feeling overwhelmed?

I start off by reassuring them and saying ‘don’t feel embarrassed, don’t feel ashamed. This is human and it’s actually normal’. Also I show them some gratitude because again it’s hard for people to open up and if someone comes to me I will say thank you because it means that they’ve put their trust in you and that means a lot. I’ll reassure them in terms of being able to overcome the issue, and I usually talk about things that helped me so mindfulness was a big help, or CBT techniques which are techniques for thoughts – how to stop the negative thoughts or spiralling thoughts and how to work on them. I’m able to signpost people to books – one that really helped me was called Finding Peace in a Frantic World. Have you heard of it? It’s a book on how to improve your wellbeing and mental health and it’s very practical and it really helped me. There’s a great app called Insight Timer which has all sorts of different meditations, relaxation and visualisation exercises. There’s a lot on depression, anxiety and they’re really helpful. So I’ll always refer people onto different things or signpost them onto different places. But I think the main thing is reassuring people, letting them know that it is okay and it will pass. There is hope.

Do you have a daily routine of exercise or do you make it up as you go along?

Again, because of my schedule, it is hard to have something daily in there to keep my health up. I try and walk now as much as I can. If there’s a chance to walk, rather than get the bus or the train then I’ll try and walk somewhere. I try and go swimming as much as I can in any local swimming pool. Swimming is really good I feel for both mind and body. Yoga as well is another one that really helps me and I just try to do them as much as I can – as much as is possible. They really help.

Jonny’s book The Stranger on the Bridge is available to buy now. 

Read about mental health first aid here.