Let’s face it, when most people think about schizophrenia, those thoughts don’t tend to be overly positive. That’s not just a hunch. When my charity, Rethink Mental Illness, Googled the phrase ‘schizophrenics should...’ when researching a potential campaign, we were so distressed by the results, we decided to drop the idea completely. I won’t go into details, but what we found confirmed our worst suspicions.

Schizophrenia affects over 220,000 people in England and is possibly the most stigmatised and misunderstood of all mental illnesses. While mental health stigma is decreasing overall, thanks in large part to the Time to Change anti stigma campaign which we run with Mind, people with schizophrenia are still feared and demonised.

Over 60 per cent of people with mental health problems say the stigma and discrimination they face is so bad, that it’s worse than the symptoms of the illness itself. Stigma ruins lives. It means people end up suffering alone, afraid to tell friends, family and colleagues about what they’re going through. This silence encourages feelings of shame and can ultimately deter people from getting help.

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Someone who knows first hand how damaging this stigma can be is 33 year-old Erica Camus*, who was sacked from her job as a university lecturer, after her bosses found out about her schizophrenia diagnosis, which she’d kept hidden from them.

Erica was completely stunned. “It was an awful feeling. The dean said that if I’d been open about my illness at the start, I’d have still got the job. But I don’t believe him. To me, it was blatant discrimination.”

She says that since then, she’s become even more cautious about being open. “I’ve discussed it with lots of people who’re in a similar position, but I still don’t know what the best way is. My strategy now is to avoid telling people unless it’s comes up, although it can be very hard to keep under wraps.”

Dr Joseph Hayes, Clinical fellow in Psychiatry at UCL says negative perceptions of schizophrenia can have a direct impact on patients. “Some people definitely do internalise the shame associated with it. For someone already suffering from paranoia, to feel that people around you perceive you as strange or dangerous can compound things.

“I think part of the problem is that most people who have never experienced psychosis, find it hard to imagine what it’s like. Most of us can relate to depression and anxiety, but a lot of us struggle to empathise with people affected by schizophrenia.”

Another problem is that when schizophrenia is mentioned in the media or portrayed on screen, it’s almost always linked to violence. We see press headlines about ‘schizo’ murderers and fictional characters in film or on TV are often no better. Too often, characters with mental illness are the sinister baddies waiting in the shadows, they’re the ones you’re supposed to be frightened of, not empathise with. This is particularly worrying in light of research by Time to Change, which found that people develop their understanding of mental illness from films, more than any other type of media.

These skewed representations of mental illness have created a false association between schizophrenia and violence in the public imagination. In reality, violence is not a symptom of the illness and those affected are much more likely to be the victim of a crime than the perpetrator.

We never hear from the silent majority, who are quietly getting on with their lives and pose no threat to anyone. We also never hear about people who are able to manage their symptoms and live normal and happy lives.

That’s why working on the Finding Mike campaign, in which mental health campaigner Jonny Benjamin set up a nationwide search to find the stranger who talked him out of taking his own life on Waterloo bridge, was such an incredible experience. Jonny, who has schizophrenia, wanted to thank the man who had saved him and tell him how much his life had changed for the better since that day.

The search captured the public imagination in a way we never could have predicted. Soon #Findmike was trending all over the world and Jonny was making headlines. For me, the best thing about it was seeing a media story about someone with schizophrenia that wasn’t linked to violence and contained a message of hope and recovery. Jonny is living proof that things can get better, no matter how bleak they may seem. This is all too rare.

As the campaign grew bigger by the day, I accompanied Jonny on an endless trail of media interviews. What I found most fascinating about this process was how so many of the journalists and presenters we met, were visibly shocked that this young, handsome, articulate and all-round lovely man in front of them, could possibly have schizophrenia.

Several told Jonny that he ‘didn’t look like a schizophrenic’. One admitted that his mental image of someone with schizophrenia was ‘a man running about with an axe’. It was especially worrying to hear this from journalists, the very people who help shape public understanding of mental illness.

Many of the journalists also suggested that through the campaign, Jonny has become a kind of ‘poster boy’ for schizophrenia and in a way, I think he has.

Jonny has mixed feelings about the label. “I hope that by going public with my story, I’ve got the message out there that it is possible to live with schizophrenia and manage it. It’s not easy, it’s an ongoing battle, but it is possible. But I’m aware that I’m one of the lucky ones. I’ve been given access to the tools I need like CBT, but that’s not most people’s experience. Because of our underfunded mental health system, most people don’t get that kind of support. I can’t possibly represent everyone affected, but I hope I’ve challenged some stereotypes.”

As Jonny rightly says, one person cannot possibly represent such a diverse group of people. Schizophrenia is a very broad diagnosis and each individual experience of the illness is unique. Some people will have one or two episodes and go on make a full recovery, while others will live with the illness for the rest of their lives. Some people are able to work and be independent and others will need a lot of support. Some people reject the diagnosis altogether.

What we really need is a much more varied and nuanced depiction of mental illness in the media that reflects the true diversity of people’s experiences.

What I hope Jonny has managed to do is start a new conversation about schizophrenia. I hope he has made people think twice about their preconceptions of ‘schizophrenics’. And most importantly, I hope he has helped pave the way for many more ‘poster boys’ and girls to have their voices heard too.

For more information, visit Rethink Mental Illness

*Name has been changed