Rethink: stigma and discrimination

Vanessa Pinfold: Stigma is such a big problem in mental health. It’s a problem for individuals that are experiencing mental distress, it’s a problem for their families. The research that we’ve done shows that it’s a problem in every corner of peoples lives – it affects the conversations that they have with friends, it affects their working relationships with people, it affects going to the corner shop, it affects speaking to their neighbours, it affects applying for a job, it affects whether you’re going to get a house or not – it’s everything, it’s right the way through peoples lives.

It’s hugely upsetting to hear how difficult it is for carers to live with this stigma. It’s doubly difficult, because they can see what’s happening to the person they care for and they also have that experience themselves.

It’s very, very difficult – people have had to give up work, it means that people don’t go on holiday, it means that people have found it very difficult to socialise, people become very isolated, become quite unwell themselves, because of this whole thing around the difficulties of talking about somebody in the family or a friend who’s got a severe mental illness, or who is very, very unwell at a particular point in time.

I think it’s difficult because there are just general stereotypes out there about what it means. If you say: ‘my son’s been diagnosed with schizophrenia’ to your colleague, or to your friends in your exercise class on a Thursday evening – there are a number of stereotypes that go alongside the image of schizophrenia, bi-polar, anxiety, or eating disorders or whatever it is – and people find that very, very difficult. Until we can get to a position where people are more knowledgeable about mental health problems, and some of these unhelpful stereotypes are put in perspective, its very, very difficult for families to be able to talk openly about difficulties they are experiencing. 

It’s also really important to emphasise about how this plays out through different cultures. In some cultures it’s very much that whatever your problem – it doesn’t matter if it’s about mental health, or financial difficulties – you keep it in the family, you do not discuss it and you maintain that. In other cultures that’s not the case and people talk more openly about it. 

So I think there are also cultural dimensions going on here – but definitely we see there is a massive difficulty feeling that people understand. Or somebody might understand for a while, but will an employer really be sympathetic when you are asking for compassionate leave because you’ve got to go to a hospital appointment with your daughter – then in come the stereotypes with them feeling ‘are they really ill?’ or ‘are you going to be reliable anymore?’ Carers and family members have found it easier to just not to say what the issue is. 

And also the longevity of some people’s illnesses, it gets very difficult.  I always remember a carer talking to me about the fact that she’s got three children and of course she loves all her children equally, but over time it was much, much harder to talk about her son. It was much easier to talk about her daughters – who had got married, had children – so when she was talking and when people were asking about her family, it was easier to talk about what was happening to them than to go into the detail about how her son was still struggling – he was still really ill, you know he had his good days etc – but I was harder to talk about that situation. So she felt so guilty because every time somebody asked and she talked about her daughters she felt she was letting her son down by not talking about him, and she wanted to talk about him but she found it so difficult to do so.