Stigma: carers' views

Marshall Whiting: Understanding stigma, dealing with stigma is crucial to caring. It's almost, in some ways, worse than the illness itself, because other people will be at pains to avoid the person with schizophrenia and of course that's not good for him, for his own health.

Elaine Moore: Initially I just said my son was in hospital and then I was thinking about it...and some people I would say he’d been sectioned, other people I would just say he’s unwell. And then I thought hang on, this is no different than a physical illness, except with a physical illness, people are not so scared of it. They may have fears around the illness but they are not so scared of it.

Marshall Whiting: Dealing with stigma is very difficult. In the early days, I adopted a tactic of telling everybody that my son was ill, and I discovered that wasn’t the best practice for me, or my son. You have to be very careful because the general public are prejudiced, they don’t understand what schizophrenia is – there’s a huge amount of ignorance.

Elaine Moore: It’s a very grey area, mental illness, and the only press you get about mental illness is bad press, from experience. They don’t tell you about schizophrenics living a normal life.

Marshall Whiting: They then get lead along the path of stigma, which is led by the tabloid press, of everybody that has schizophrenia is a mad axeman – which of course is nonsense.

The other way of dealing with stigma is to join support groups with people who are carers, and that means that everybody in that small group or large group or conference, or whatever it is, understands what the difficulties are. And that’s a great help, because you can then swap ideas, you are talking to people who know exactly what the difficulties are, and you feel much more relaxed.

In the general sense, in general life, in shops and so on it’s much more difficult. You adopt your own tactics. I’m never one to hide it, I don’t ever do that. But there are tactics you can use, you have to be a bit more diplomatic I think than I was when Tom, was first diagnosed, my son was first diagnosed.

At the moment there’s no real public understanding of what schizophrenia is. When research findings are publicised, as they are more and more frequently now, the stigma hopefully will go, which is why I am actually such a supporter of research. Research, is, I think, one of the keys to cracking stigma. Stigma is a horrible thing, even health professionals stigmatise patients.  So stigma is a big, big problem. As I say sometimes it’s bigger than the actually illness itself.