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Mental health: ethnic minority carers’ experiences

Negative attitudes to mental health problems

Unfortunately, many people don't understand mental health problems and may have a negative view of people who have them. This can cause people with mental health problems to be treated badly or labelled in a way that hurts their standing in the community. This is sometimes called 'stigma', and can affect those with mental or emotional problems and their carers and families.

 

Nick describes how the stigma of mental health problems affects families and communities.

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Nick describes how the stigma of mental health problems affects families and communities.

Age at interview: 74
Sex: Male
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Talking about stigma' it is a well known fact that many in our community are 'mental' about mental illness which is why the majority of carers stay 'hidden'. We talk in whispers about schizophrenia just as they did about cancer not so long ago. We are ashamed to say that we care for a mentally ill person at home. We avoid attending carers' support groups where there is someone there you know or is from your community or is a neighbour. Relatives and friends avoid us (equally we try and avoid them) and the lives of siblings are blighted with the prospect of finding a life partner becoming a serious problem because many of us think that mental illness always runs in families.

People's lack of understanding of mental health
A mental health problem is not something you can see and it can be 'difficult to get your head around' it. Some carers talked about wrong ideas people often have about those who have mental problems, for example that they are often violent.

People described the names others used to describe people with mental health problems, such as 'mad', 'crazy', 'cuckoo', or 'nuts'. They said people with mental health problems can be excluded from the community or made fun of. One woman said that jokes about mental health problems 'are just not funny' because of the way people are treated. 

Even the name of a diagnosis, such as 'schizophrenia', can sometimes be used as a negative word. One or two carers mentioned that some languages lack words for mental health, which might keep old stereotypes alive.

 

Some languages need better words for mental health problems but even in languages that have...

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Some languages need better words for mental health problems but even in languages that have...

Age at interview: 56
Sex: Female
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Asian communities, you know, the language unfortunately doesn't change in the Asian community as it does in the recent mental health services. As a worker, -so we will say 'people with mental health problems' rather than, 'mad', or whatever. But I deliberately used the word, 'mad', a few times in my conversation because I think someone, a professional, not within mental health services but from outside said that, you know, as a mental health service worker I might say that, “Oh the English language has changed and it's got, -it's much better at expressing people, you know, and not condemning people with mental health problems”. But he said that, if you go outside in the community people will still use words like, 'mad' and 'nutter', and all kind of derogatory terms. But to me, because the Asian languages don't have good ways, at least in England as, -because I'm also now really far from my own culture, back in India or wherever, that maybe it has changed. But I don't know about it, so my concept is still the same, that maybe the community still consider everybody in the term of, 'mad', rather than somebody having mental illness really, so.

Some said their whole family was treated with suspicion or as 'untouchables'. This was shown in body language, by staying away, by staring, making fun of them or ignoring them on the street. Such behaviour hurts people and affects social and family life and in some cases even opportunities for getting married and starting a family.

TV and media were seen as almost always portraying mental health problems as something dangerous or scary, particularly, some said, when discussing mental health in minority ethnic communities. 

 

Sophie thinks the way people think about mental health needs to change.

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Sophie thinks the way people think about mental health needs to change.

Age at interview: 42
Sex: Female
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It needs to be revamped and changed and lots of things need to be taken into account about how we view, how everybody sees mental health and how we view it, you know. Even simple things like advertisements on the TV and stuff like that just to make people be aware of things. A lot of people are not aware of lots of things that's going on. They're not aware of diagnosis and helping people and they're just not aware of things and it's about, you know, knowing that you might have a five year old and that five year old is able to see that somebody isn't quite normal and there's reasons why instead of it being fun or some pointer or ridiculed or whatever or they're not knowing how to deal with it because it's part and parcel of everybody's every day life. We pass somebody in the street lying there who's down and out or a vagrant or whatever, or somebody that's eating out of a garbage bin or somebody that's, you hear on the news -and that's the time you only hear it on the news when people have mental health problems and have done something terrible and to think that there's thousands and thousands of people who are coping with mental health problems and it's only when the negativity arises that it's addressed and this should be done and why wasn't this person in proper care and that kind of stuff. And I thought how dare anybody question that when there isn't anything there to look after people who are going through that, there's nothing there for the carers, for myself and for other people that every day have to go through this system and try and be heard, there's nothing there really.

People agreed that it is necessary to teach others that those with mental health problems, “are not 'mad' but have an illness”. Many get better or manage fine, and they should be treated just like people with other illnesses. 

Some people said that despite the need for improved understanding, the communities' understanding of mental health has improved over the years.

Views of mental health problems in different communities
Views differed on whether negative attitudes are more common in some communities than others. Some believed negative attitudes were more widespread in their own community: others thought it was much the same everywhere. Some people with an African-Caribbean background said that people with mental health problems face less stigma in the West Indies than in the UK. Many thought different cultures could learn from each other (see 'What different cultures can teach us').

Most of the carers recognised some negative views of mental health problems in their community here in the UK and said people in their family at times felt ashamed of mental illness. 

 

Nita felt ashamed before she learnt about mental health problems and says awareness needs to be...

Nita felt ashamed before she learnt about mental health problems and says awareness needs to be...

Age at interview: 46
Sex: Female
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It's about a lack of understanding, even I didn't have an understanding of mental health, and, and because of the different views in our communities about people who exhibit that kind of behaviour. I mean, they have this thought that if somebody goes a bit, -if they have mental health problems that somebody else has done it to them, they've put like a curse on them, or something like that. So there isn't clarity or transparency around the issue, and maybe the solution is that they need, you know, you need more awareness in the community. You need counselling and therapeutic measures in the community.

Yeah there is a lot of stigma, and there's also, I think, I think there's, you don't get anything until you experience it first hand. But I, I felt ashamed at times, I felt ashamed to say, especially in the early days to say, 'Oh she's got mental health problems', and I didn't know that she had mental health problems. So there is still a lot of stigma and taboo, especially because people don't know the full extent of the illness, and how it manifests, and why it's created. And I think that's been part of the, -my journey, healing journey, understanding that it might have happened because of this, and this is how it looks like, and this is the treatment for it, some kind of rationale.

One African-Caribbean woman who grew up with mental health problems in her family suddenly, when she was 11, discovered that “people don't talk about this”, and people from other communities too said that talking about mental health problems, especially to someone outside the immediate family, was not 'the done thing'. Some described cultural 'taboos' that make it hard to talk about what being a carer is like.

One woman said that her community in East Africa blamed her for her son's illness because she had brought him to England where they thought he wouldn't learn to stay away from harmful behaviour.

 

Her family 'back home' blames her for bringing her son to England where he became unwell.

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Her family 'back home' blames her for bringing her son to England where he became unwell.

Age at interview: 51
Sex: Female
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I mean, the culture that I come from, I think that is a big problem in the sense that everybody knows that if you're here you're here for, eh, there's a reason you go to England and you do something for yourself and, you know, at times, as a carer, you get, you feel that people blame you as a mother, maybe where did you go wrong, or is it your fault, or did you bring him up well enough, or are you doing something wrong that's making him do such things and I think as an African I get the blame most of the time, that people feel that it may be the way that I brought him up.

And is that within, the interpretation within African culture, that this, that the blame is put on you? Can you say a bit more about that, what is that linked in with in African culture, do you think?

As I say, the mental illness is not a sort of hereditary thing, and there's no-one' in that they feel, -I think my family back home feels that maybe because people know or understand that children in this country are not disciplined, they understand, and so they do what they want and they will drink and they whatever, so maybe you were not able to bring them up well enough, to be able to understand and the sort of lifestyle that has made them the way they are. So, they always say, oh you have to bring him home, you have to bring him home, but they also don't understand that you cannot force anyone under 20 years old to say, go in a plane and go away. You know, so, that becomes hard and as I say, most of the people that I know, that come from the same background as I, or I know from my cultural background, I don't talk to them about him, because I know that they will always have something negative about the whole situation, that hurts, so.

Some carers believed that mental health problems can have spiritual causes. Others felt beliefs that explain mental illness by curses, or part of one's destiny or Karma, don't help and are misleading. One woman said that such beliefs 'do not serve us any more' because they focus on blame and not on helping people who are ill.

 

Ramila explains how some people from Indian cultures believe in curses.

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Ramila explains how some people from Indian cultures believe in curses.

Age at interview: 56
Sex: Female
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Yeah, there is this thinking going on that there are certain people in, you know, this is more like Eastern, Indian thinking, when there are certain people who have got the evil eye, so to speak. And they can cast, you know, if they're jealous or envious or not happy with you, if you do something wrong to them by, maybe sometimes they come begging for food or something or the other, or whatever. And if you don't give them whatever they want then they can cast a spell or curse on your family or on you. And, -or if they see, sometimes it's, like a little child or beauty, if they feel, oh someone's very wonderful and beautiful, or a little child's so lovable, then they could cast that as well, you know, as a curse maybe.

Another woman was cross about the way people in her church claimed mental health problems are a result of sin or not praying enough. She had joined a group that try to make churches more aware.

 

Anne talks about how the Bible comforts her when people say mental and emotional problems are a...

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Anne talks about how the Bible comforts her when people say mental and emotional problems are a...

Age at interview: 40
Sex: Female
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I think it's laughable. Because if you look in the Bible there's a book called Job, and he was somebody that was a real righteous man, didn't do anything wrong. And then suddenly everything went wrong in his life and he lost his wife, his children, his job, he'd got a really bad illness and his friends, four of his friends came along and sat with him for about seven days, watching him in complete and utter agony. He's lost everything and he's in such pain. And then after the seven days they go, 'Well we can't work this out but this', they said, 'Well it must be something you've done wrong' etc. 'And you must do this and you must do that, and that's why you're ill because you're not thinking right. And you've obviously got problems with your emotions and you need to sort them out'. And they started condemning him and judging him. And then in the end when God turns up, God says to them, you know 'You've got it all wrong'. So that has really actually encouraged me in the past, was I thought, these people that think somebody's mentally ill because they're, got a past sin or they're not, they've let the devil into their lives, or they're not praying enough or something, it just doesn't stack up with the rest of the Bible at all. So I actually feel sorry for them because I think they're like Job's comforters. As I say, that where they've just turned it round because they can't understand themselves. And it's quite sad that they don't actually want to learn about mental illness and actually help people.

Dealing with negative attitudes

Carers sometimes protected themselves and their families by keeping to themselves or not telling others about mental health problems. 

 

Ramanbhai doesn't tell people about his wife's depression to protect her.

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Ramanbhai doesn't tell people about his wife's depression to protect her.

Age at interview: 62
Sex: Male
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If the samaj (community) laugh at you, how have you coped?

With the samaj, my samaj don't know about this at all. I will tell you this. At the beginning -and I will not let the samaj know either, even my brother does not know. This, they way I cope, she does not do this with other people. What is happening, occurs with me not with other people. Sometimes when she does something wrong I will sort it out and cover it up, so it is not known to anyone. I am always with her. I avoid the situations where other people get to know. 

What are reasons for why you do not want people to know?

The reason for letting people know is, my wife does not like it. Then she thinks more about it. She will think, 'I am like this, I am a failure and I am like this, -is that why people are talking about me?' So if she finds out about this and at this moment in time, in her brain, it can be damaged a lot more. At the moment, the way her mind is it will have more of an effect. You understand? So we, the way I do things is to ensure that there is less effect on her. That she remains happy and less effect on her. What happens this way is we are all well. If you ask her to stand to face this, she will feel, 'Why me?'. If you keep telling her about one thing that is bad and keep repeating that, then it will get worse. So why would we let other people know? So people can look at her in that way. You understand?

To avoid gossip, many 'kept it under the carpet', or kept a 'stiff upper lip' when others talked about them. Some were careful who they talked to and some did not even tell their close family about the problems. Others said they 'pretend that things are different', such as saying someone is 'working from home' rather than being unable to work.

 

Nick sometimes says his son has depression because it is more accepted than schizophrenia.

Nick sometimes says his son has depression because it is more accepted than schizophrenia.

Age at interview: 74
Sex: Male
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It's, well, the usual thing isn't it? In our community, especially in Indian and even the black community and others this is a stigma. Those days they used to say 'cancer', but now they say it openly because it's an accepted thing, it's nothing, it's not a, you know, communicable disease or anything like that. But the people that you know, now we had to tell so many fibs, when they say what it is? I would say, 'Depression'. It's a respectable term relatively speaking.

Depression is better than schizophrenia?

Yeah, apparently Churchill was also a depressive. So that is more acceptable than anything else. And in any case, they, people suffering from depression, even manic depression, can and are able to do a damn good job of work, you know. I know that personally. So, but not a schizophrenic. So we had to say that and of course our relatives, close relatives and -unfortunately we don't have many in this country, only my wife's sister, that's all, and her family. Even they, she was kept from the truth quite a while, until recently.

 

When builders came to fix damage her son had done to the wall, she pretended it had always been...

When builders came to fix damage her son had done to the wall, she pretended it had always been...

Age at interview: 59
Sex: Female
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Again, I am being careful with the people I am telling the situation, and I am not always telling everything, because for instance, that's years ago he made a hole in the wall, in his bedroom wall because he could not sleep, so he just punched a wall, I mean I know it's a partition, it's not a bearing, it's a partition wall, but still it was, -and he didn't hurt his hand, it was quite amazing. So he made that hole, and so I would not say that because people, they might think it's a bit odd, sort of very odd behaviour and he might be violent or whatever, so, -and I remember I had some builders after to redo the wall, and they could not understand about that hole. They were looking for a leak somewhere. And I said that, 'Oh, it was here before', but yeah.

One woman said that her ex-husband had decided their son should not go to a psychiatric hospital because he was worried it could affect his future career. Another mentioned that her son didn't want to socialise with other people with mental health problems to avoid being labelled.

Other carers said they 'did not bother' about who knew and that they would talk freely about it. One woman even said she sometimes chose to 'shock people' by telling them about mental illness in her family.


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Last reviewed September 2018.

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