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Mental health: ethnic minority experiences

Discrimination due to mental health

Research suggests that people who are seen to be 'different' or 'threatening' are more likely to experience discrimination and be treated negatively. This is true for people from Black and minority ethnic communities and those with mental health problems. Many people experienced discrimination on the basis of their ethnicity as well as direct and indirect racism in their lives generally but also in their dealings with the mental health system.

Some felt these negative experiences had contributed to their mental health problems. Experiences of racial discrimination are therefore discussed elsewhere on this website (see 'Getting a diagnosis of a mental health problem', 'Views about causes of mental health problems', 'Getting information about mental health', 'Outpatient & community services', 'Being in hospital for mental health problems', 'Being sectioned under the Mental Health Act', 'Prescribed medication for mental health problems and their side effects', 'Talking therapies & ECT for mental health problems'). Here, people talk about experiencing discrimination because they have a mental health problem, although their ethnicity was sometimes relevant too and might have even added to the discrimination (see below).


The stigma of having mental health problems
Many people talked about the stigma or taboo associated with mental health problems which they felt existed regardless of ethnicity. People felt that they were seen by others as dangerous or threatening and several said that people with mental health problems were feared, especially those with schizophrenia: “you're demonised in society”. 

 

Sara thinks schizophrenia is more stigmatising than anorexia, which is perceived to be "a White...

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Sara thinks schizophrenia is more stigmatising than anorexia, which is perceived to be "a White...

Age at interview: 31
Sex: Female
Age at diagnosis: 17
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I think that anorexia is perceived as a white middle class disease and I do know about research that says that if you are from ethnic minority you are more likely to be diagnosed with an illness such as schizophrenia and you are more likely to be given medication. I think the class thing is important as well though I don't think it's just about being white. You know, I think the typical picture of the anorexic is someone who you know, is a kind of beautiful white person, very clever, and you know, I think maybe also middle class parents and maybe, maybe find it easier to negotiate the system, you know… And, I don't know I think I just didn't, I didn't look like the anorexic. I didn't, don't fit that, no, let me think. I wasn't, well I wasn't the typical anorexic like in terms of the profile of somebody who's got an eating disorder. I know nowadays eating disorders are more widespread and they can affect all kinds of people. But I think that, you know, before there's a certain type of person that they think that is the anorexic and, and certainly with the stealing food and everything, you know, that, if it was a white middle class person doing that they might think, I'm not really explaining myself very well am I? My brain has gone… I think if you look a certain way you are more likely to be taken seriously and you're more likely to be listened to. I don't know. I don't really know what else to say.

And do you think, I mean comparing schizophrenia and an eating disorder, I mean they're obviously quite different, very different. Do you think that schizophrenia is a more stigmatising label than an eating disorder?

I think it frightens people. I think there's a lot of, I mean like articles and newspapers about paranoid schizophrenics going on the rampage and killing people. And I think a lot of people were quite, you know, scared, like people where I live and stuff. I mean I think on the one hand like if somebody has got something like schizophrenia then you'll get two camps, you'll get the camp that says, oh well it is not their fault, because it's biochemical and all they need to do is take medication. And then you get the other lot who think that they are really like evil people.

And I'm not explaining myself at all, my head has gone… I don't think it is biochemical and all you need to do is take medication, or that you're a bad person, so it's one or the other. And I think eating disorders it's kind of like people can maybe relate to eating disorders because a lot of people even if they don't have them they do have concerns about their weight and food and stuff, whereas something like schizophrenia, especially when the media kind of really plays it up, that schizophrenics are like these dangerous people who go round killing people which is not even true, you know, a small minority do, but I know people that have mental health problems are more like to be attacked by other people, than actually go around attacking anyone, but people don't know that and they hear a diagnosis like schizophrenia and maybe some of the symptoms of schizophrenia such as hearing voices and being delusional and stuff and they can't really relate to that, whereas they might be able to relate to somebody, you know, feeling fat and overeating or under-eating or somebody feeling a bit down. They might not be able to relate to somebody thinking that there is a government conspiracy after them or whatever, you know. I think schizophrenia is quite a stigmatising label to have.

Some felt that others suspected that they were pretending to be unwell and didn't want to work, or might be incapable of work. Others said they weren't taken seriously or were even made fun of. A few people mentioned that people expected them to be different in some way from people without mental health problems. Some thought other people might make these assumptions and judgements because of their lack of understanding or awareness about mental health issues: “we're not mentally unbalanced all the time”. A few people thought discrimination was widespread and encouraged by the media.

Some people thought that mental health issues were more taboo in certain cultures and countries and some felt that discrimination against people with mental health problems was a particular issue within their own communities and their home countries. This sometimes affected the amount of support people got as well as their use of mental health services. 

 

Tariq says some families in his community refuse to allow relatives with mental health problems...

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Tariq says some families in his community refuse to allow relatives with mental health problems...

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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We suffer those worst forms of everything and we have the least number of people. But I think that's, I think we suffer the lowest number but the people that do suffer mental health difficulties within the, within my community don't tend to come forward and, and use mental health services. 

I've met many families who are refusing to allow their children to use, who experience children, their children who experience mental health difficulties to come forward and use mental health because of the family shame. and they, they, a lot of them are quite religious so they think it's, their kids have been possessed and it would be bring shame on their family from their relatives and stuff so they prefer to keep the person, their daughter at home or their son at home and not let them access mental health services. so I think that's a very major stigma that needs to be defeated but I don't think anyone is interested, the government is not interested, I don't think the Department of Health or any government agency is really interested, nobody really cares. But I think that mental health charities have taken a good step in showing look there are problems and we need to highlight them and we need to explore them and discuss them and have a healthy debate. But government who, who hold most of the money who can put thousands into these services to tailor and, to challenge stigma it's not a priority for them so I don't know I think it's going to be very difficult.

Comparing responses to mental and physical health problems
People often compared mental illness with physical illness. They said that whereas having a mental health problem was seen as “the worst thing that can happen”, physical health problems were not considered as important. Some felt that people responded differently to physical illness, for example, being more sympathetic or making more effort to be accommodating at work: “if I had one leg, they'd be tripping over themselves to bleeding find a special chair but when it's mental health, no one wants to know”. This was thought to be partly because mental health problems are not immediately visible.

 

Hanif thinks people don't want to talk about mental health problems and unlike when someone has a...

Hanif thinks people don't want to talk about mental health problems and unlike when someone has a...

Age at interview: 49
Sex: Male
Age at diagnosis: 23
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And of course stigma is very much prevalent within all this, you know, especially because as soon as, you know, we go and say that, you know, Hanif, in my case certainly enough because the stigma was very real, because a lot of people in the community, of course once they got wind of, you know. And of course they observed my behaviour, you know. And of course they all said, Hanif's gone a bit, you know, crazy. And so of course that element also has its, you know, had a part, you know, because then of course it's also a subject nobody wants to talk about, you know. Because, you know, they might say silently but nobody wants to actually, not confront but nobody actually wants to, so nobody would even come to say to, for example, my dad and say what's wrong because it's a subject nobody, you know, like when you have cancer or something you, you know, you know, go and visit them if you're sick. In this case what do you do? I mean you don't go and kind of visit and, you know, come home and say, 'Oh how's your son?' you know. There's a sympathy, you know, because normally if someone in the home is sick, we have visitors. You know, many cultures, in our culture certainly, you know, if my mum is ill or somebody's ill, you know, we will get visitors coming in, you know, just to wish us well. If it's cancer or diabetes, not diabetes but more so one of the kind of major, you know, kind of, you know, long term illnesses, especially if its cancer or someone's had an accident. You know, you'd get visitors, you know, coming home and yeah. You know, coming for sympathy, I mean to give, to offer sympathy and well wishes and prayers. 

But in the case of mental health, you know, it's, it's, you know, do you go, do you not go? No one knows there are no protocols really. In terms of there is no, there is no good guide, there is no good practice guidelines [laughs]. You know, how to deal with it. Four years through experiences now I'm probably, I'm still not sure myself actually, you know. How would I, you know, how I would I go and, you know, say if I knew somebody, you know, would I approach, you know, go and offer my sympathies or some support directly to the home, or not? It's, you know, in a work setting I would I know to an extent how to offer help and support because I'm in that kind of work. But outside of that field it's, I still myself sometime struggle how one offer's support to people, you know, once, you know, that, you know, they've, you know, they've had an episode of an illness which might be serious.

Experiences of direct discrimination
In some cases, people had experienced discrimination as a result of their mental health problem in all areas of their lives. A few people felt that people with mental health problems receive worse physical health care because they are not believed. A few said they had been treated badly by the police. 

 

Ugo says the police did not recognise that she had a mental health problem because she is Black;...

Ugo says the police did not recognise that she had a mental health problem because she is Black;...

Age at interview: 38
Sex: Female
Age at diagnosis: 31
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I had in the , I know when I got, I got arrested at one point for being' when I was unwell and the police took me the police station and I was stigmatised by the police station because they thought I was drunk and under the influence of drugs and I wasn't it was my mental health and they'd arrested me from the hospital but because they seen it was a black person who was unwell they didn't even think I was unwell, it was just because I was black that it was drugs and alcohol' And they left me for sixteen hours in a police cell'

Really? And have there been any other experiences like that?

No.

No nothing?

No.

Okay and what about just generally in the community have you had'?

In my church when I first became unwell and the baby got taken off me there was a social worker who worked in the church, went to the church and she told the church that they shouldn't let me in the church because I'd been diagnosed with a mental health and the baby had been taken off me and I was a danger to all the kids in the church.

And how, what happened?

So I was barred from the church.

Really?

Yes.

And I mean do, so do you go to a different church now?

No they went to the court with me and once they heard from the courts that it wasn't, they let me back, they said they was sorry and that and that it shouldn't have happened really.

That must've been a very difficult time for you.

Yes' it was it was really difficult because you, you feel like you need your spirituality and all that and then they was pushing you away through your mental health because of someone's prescription that if you have mental illness and your child has been taken off you that shouldn't be near anyone's kids and it wasn't that I'd hurt my little boy.
 

Some said they had no friends or had lost friends when they were diagnosed, including one man who said his friends “disappeared like leaves off an autumn tree after I was diagnosed as being ill.”

 

Many of her friends haven't spoken to her since she became unwell. (Played by an actor).

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Many of her friends haven't spoken to her since she became unwell. (Played by an actor).

Age at interview: 41
Sex: Female
Age at diagnosis: 32
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And do you think having depression has affected your life in any way?

It has, yes. A lot of people, when you're depressed, you've got an illness, they don't, you know who your friends are. Most people that know that I have, really, don't really say much, don't speak to me.

And this has happened since you had the depression?

Yes.

Do you know why that is?

What?

Do you know why that might be?

Well, they just probably think that I'm not, not good enough for them, to be a friend, you know. Black people are, they're full of pride. I mean if something goes wrong they tell you, you know. Like, you know, always with whites, when somebody is ill they still get help. But, you know, with blacks, you know, they don't want to, they just don't want to be involved, involved in things like that, get involved.

Some were also concerned about what consequences having a mental health problem might have for their prospects for future relationships.

 

Tariq says if his community found out about his mental health problems it might make it difficult...

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Tariq says if his community found out about his mental health problems it might make it difficult...

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Okay and so what, what do you think would happen if your community found out, can you say a bit more about that?

Well people would look at you in a negative way, probably ridicule you behind your back, probably make, you know, say things that would be very hurtful if you were there. ridicule you and, and it would be frowned upon, people would think oh my God and it would be spread across relatives and people would be like, “He's got mental health difficulties.” And then it may be bad for my own future, for, you know, when I get married and etcetera because, you know, people will say he's got mental health difficulties, would you want to marry into a family that has someone that has a mental health difficulty etcetera. So I think those are the repercussions of if I came out openly about it. so yeah.

Do you think that is something that's particular to, to your community or do you think…?

I think it's particular to certain other communities, BME communities because I think in certain African groups it's a very sensitive issue as well. in certain, you know, in Indian culture it is regarded, in Bengali culture it is regarded as very sensitive, it's frowned upon, in Pakistani culture, many different cultures it's frowned upon. And this is not only talking from me just talking off the top of my head this is from extensive research that has been conducted by universities, that has been conducted by mental health charities, by organisations, by even organisations that tailor their service to ethnic, you know, Indian communities because there are Indian organisations, Indian led organisations that provide services to their own community, mental health services so they have also conducted research and they have found that there is a lot of stigma and a lot, among certain communities in their own. But I think that as people, as an increasing number of people enter the system it will become increasingly accepted by society and that's when it may be but I don't think that will be in my lifetime.

Others felt they had been “abandoned” by their family when they became unwell: “there's this big issue of Black people they really do not help the mentally ill themselves because you don't want a mental, a nutcase in your family”.

 

Reena feels her family "abandoned" her when she became unwell. (Audio in Bengali, text in English).

Reena feels her family "abandoned" her when she became unwell. (Audio in Bengali, text in English).

Age at interview: 42
Sex: Female
Age at diagnosis: 32
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So they were watching me for a while; they provided a health visitor, family support and also they sent somebody to help me give a bath; also somebody to talk to. But nothing really helped. And the main problem I did not mention to anyone, about what happens; who tells me off etc. My husband used to hurt me by his words; his family as well, I was very close to his family. Every Saturday it was like a party at my home. As soon as I started suffering from depression, all of them gradually abandoned me. Then there was nobody to look after me, only the kids. Even my husband didn't listen. In the end he gave up work after the daughter was married off. He did not give it up prior to this…

And before going to [local] hospital I said to my GP, told them my story and said, “Even you guys don't care for me, my family doesn't care, I haven't got many friends either. I want to talk; everything is just building up inside me.” So the GP said you can talk to me, there would be no problem. So I started talking to her slowly.

Some had experienced abuse from people in the street (see Sara's story) or neighbours: “this woman learnt about my mental health and she was telling everybody that I was a total mental nutcase and being totally abusive”. One woman was asked to leave her church because she was perceived to pose a threat to the children there.

Several people said that they had experienced some form of discrimination at work. This included not being offered jobs, being considered unsuitable and not being promoted. 

 

Shaukat believes he hasn't been promoted at work because of his mental health problems and says...

Shaukat believes he hasn't been promoted at work because of his mental health problems and says...

Age at interview: 36
Sex: Male
Age at diagnosis: 30
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Hmm... So do you, I mean, do you, do you feel like that is discrimination? Because of'?

Yeah, I mean it's, it's there's definitely, you know, like the thing is that it's very vague because of the way they measure you for promotion because it, basically it's up to the manager, you know, as my line manager to say that he's suitable for promotion. He doesn't have to really, don't have to do another interview or another test or anything. So it's my day to day working ability and what he sees. Because I don't speak that much or whatever or in a meeting I won't show the skills that they, they need, then I don't get promoted. Even though I've been there five years, most of the people who've been there after me have been promoted. And it's not major, you know, it's not a major step, it's not like I'm going into like, you know, something, a different job or whatever. It's a very similar job, a bit more responsibility, more pay, but it's totally on the manager's sort of assessment, and you know, I even know that if, if it might have been a different manager he might have promoted me. So it's not even, you know, a big difference to what the level of work that I can do to what the next level is, you know, what, that I've been able to show. But technically, you know, like if you stick with the rigid rules that they've got for assessment then, you know, my skills obviously are going to be lacking because of my anxiety or me, you know, speaking with people and that, and in meetings that, but they're not so bad. I mean, it's like, you know, I've seen other people who are more quieter, just generally because they're quiet, they don't have the anxiety and they've been promoted or whatever. So it, it basically is, is, is the, my manager's thing and he's decided that he wasn't going to promote me even though he's helped me in other issues and he's, you know, made other changes to the working day and whatever, which have been really helpful. I think he's decided that, and then he's trying to stick to his decision, not really changing his mind. And he's sort of passed it on to HR saying well they need to, you know, say like if it was a test and 45% was the pass mark, he's saying they need to lower that test mark I mean, so that you can, you know, have the same as everybody else basically, get promoted. 

So, but there isn't any, you know, official marks, you're just either good enough to be promoted or you don't. So, it's just basically making, you know, what they call with the DDA, the reasonable adjustments, you know. Like they made a, other areas of, of the work and they've made them for people with, you know, physical disabilities but, you know, they don't have to do certain tasks and that, on the job and stuff and you know, it should be done with the same, in the same way but because it's, you know, it's not a visible disability it's a lot harder to get them to look at it, and get somebody to, you know, define it, and make what changes to make and. It's, you know, it's basically saying, you know, these are the behaviours that affect, well this is the illness that affects these behaviours but they're looking for those behaviours in, in, you know, in the assessment. If I don't show them as often or consistently then I won't get promoted. So, I'm kind of stuck. And it's really annoying because of my, you know, from my previous, I've done jobs which are a lot more harder, more demanding in the past, you know, with the IT jobs and stuff and I didn't really have much problem with that, I mean showing what I needed to do during the day. But because this is an open plan office and you're working with a group of people and it's not even, you know, it's not even just that. I think it's more, it's more to do with sort of gelling in with the people, you know, like my manager has a certain relationship with other people there, or they tal
 

He thinks the Disability Discrimination Act is unhelpful for people with mental health problems;...

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He thinks the Disability Discrimination Act is unhelpful for people with mental health problems;...

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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You said when we spoke on the phone that you had had some difficulties doing some voluntary work?

Yeah

Can you tell me a bit about that?

Yeah basically I think that this Disability Discrimination Act is very ineffective, I think it's a complete and utter joke. I only think it protects someone in a wheelchair or someone who has broken their finger or someone who has I don't know I'll be naïve and I'll say someone who , I don't I want to use a very stupid example just to show you how bad the Act is. someone who has probably scratched their finger and is regarded as a disabled person, they would be covered by the Act and they would be given any job. But you see if you've got mental health difficulties this Act, you know, no, I, I want any expert, any doctor, anyone to sit in front of me and tell me how it protects mental health, people that experience mental health difficulties because at the end of the day when you go to an interview you're not protected by the Act like people say because, you know, what the interviewer can say, he can, the interviewer can say after the interview okay we'll be in touch but their feedback could be this person experienced , suffers from mental health difficulties so it may be difficult for them to work with the public. That's subtle discrimination, that's discrimination that people will say actually that's not discrimination that's just , you know, this person suffered from mental health difficulties, this person can't communicate, this person knows nothing etcetera. I think that discrimination is, is so widespread when it comes to mental health there is no Act to protect these, to protect people like myself who suffer from discrimination in terms of, in the context of mental health. The Mental Health Act is flawed, it's, it's a complete joke, it's more it protects people that have, you know, a scratch on their finger or who have, I don't know, who have bump on their, on their knee or something. It doesn't protect mental health patients because it's easy to discriminate against them. If you just say oh they've got mental health they don't understand or, you know, you've had psychological problems in the past, you don't know what you're talking about. Easily discredited and if it were to go to court what would the mental health patients say? “ Sorry I've suffered from mental health difficulty.” “Oh sorry we're discrediting you, you know, you don't know what you're talking about.” And what, added onto that mental health patients can't become jury, sit on the jury, why? Surely if we're protected by the Mental Health, the Disability Discrimination Act surely we should be allowed. We're not allowed to become magistrates, why not, it's a voluntary job, why can't we become magistrates? “Oh because you can't think straight.” 

 but isn't that covered by the Disability Discrimination Act, surely if you discriminate against people based on their difficulties that's wrong.” “Oh no basically you don't know what you're saying.” That's the sort of attitude I've come across and every job that I've gone for, every voluntary position I've been rejected on those grounds. “Oh you haven't thought straight, I think you're, you might, because of your condition you may find it difficult to talk to people or communicate or get your view across.” but the thing is, you know, they've even said , “Oh you're going to be in a place where there's going to be vulnerable people, you pose a threat to them.” That's an assumption but there's no evidence to support that. And the thing is that I've never posed a threat to anyone and I go to a university where nearly every single person is regarded as vulnerable because they're

Because of this, a few people were worried about telling people at work about their mental health problems, especially in case it affected their career prospects: “that'd be like shooting yourself in the foot”. Some people were especially worried about the damage it could do to their career if they were ever sectioned under the Mental Health Act. A few people had been open with their manager and made arrangements to improve their working conditions. (Under the Equality Act, employers are required to make “reasonable adjustments” to enable people with disabilities to work - see our practical matters resources for links to further information).

 

Jay has arranged a reasonable adjustment with her workplace to allow her to come in late in the...

Jay has arranged a reasonable adjustment with her workplace to allow her to come in late in the...

Age at interview: 42
Sex: Female
Age at diagnosis: 34
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Sometimes I have to come to work very late because I just can't get it together in the morning. And it'll be 11 o'clock when I'll get in to work, when I should have been here at 10. Or sometimes it will be 12.30. But I make sure the other end of the day I make up those hours. And that's the reasonable adjustment that I've negotiated with my employers. Because it, it's no good you trying to tell me, 'You know you should be in at 10.' It's not going to happen. At certain times when my head is just not behaving, it's not going to happen. It's just not going to happen.

So, you know, I think that's the other thing that keeps you like that. Because if you don't address the fact that maybe you're going to have trouble getting in on time, the more you get slow in the morning the more you panic. Because you know it's getting closer to the time and you're going to have to give them yet another explanation why you are not in yet. And because you don't want to tell them the real reason, you have to find a reason to tell them. And it can get way too complicated. So it's just easier to tell them, 'Well, look, this is it, blah, blah, blah.' So even now it's got to the point where I've negotiated one step further. If I've had a bad night and I am up later than half past two in the morning, I will phone the office to say, 'I'm going to be late.' Because I know that those pills will not have worn off by 10 o'clock. So I'm going to be late. And I won't even be awake to make the phone call to tell you I'm going to be away, going to be late. So, you know, we've negotiated that. And that takes so much stress off my head. Because I can get up, and had a bad night and get up and it will be 11.30, 12 o'clock and I can go to the bathroom, get washed and dressed and go to work. And no one's looking at me sideways. I just phone to say, 'I'm in now' and guarantee I'll be at work 'til 7, 8, 9 o'clock sometimes. And I'll just log out and everyone will see that I've made up my time. So, you know, where, where it was an issue, you've got to try and make things not be an issue in order for you to cope. And the only way for you to make it not be an issue is to tell the truth. 'This is what it is. This is, this is the best that I can do at these particular times.' And if that company or person or whoever it is can't work with that, you've got to move on. Because no job's worth it, no person's worth it, for you to get yourself in such a state it affects your health. So, yes, that's how I do it.

Telling others
Some didn't want to tell people about their mental health problems: “it's better to hide these things”. A few people said their family kept their mental health problems secret. Others were open about having a mental health problem: “I'm not ashamed of being unwell”. One woman was open about her mental health condition but said that there was a stigma (a set of negative ideas) around schizophrenia and that “you don't want to put that on your business card”. Many said they only told a select few people who they could trust. Some began to tell close friends and family, but not extended family or their community because of what they might think and the problems it could cause.

 

Chapman didn't tell anyone about his mental health problems in his home country because he didn't...

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Chapman didn't tell anyone about his mental health problems in his home country because he didn't...

Age at interview: 23
Sex: Male
Age at diagnosis: 20
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No, not bothered, okay. If I can just go back to when you were saying about when you were back in your home country and you said that you think you had some things with your mental health then as well. Did you have any help there at all or'?

I couldn't get any help.

Did, did you try to get some help or'?

I didn't want to bring it up.

Right. Why was that?

Because I didn't want to get shunned.

Is that what could happen?

Yeah.

Can you tell me about that because that would be really help for me to know what happens when that happens?

Well people look at you differently if you say you've got a mental health problem back home. They don't treat you the same. I think now it's changed but that, when I was there it was different'

So the sorts of things that, how would they treat you differently, what kind of things would happen?

'I don't know.

So, but you managed to keep it a secret did you from people?

I didn't keep it a secret, I just tried to act normal.

Oh I see

Tried acting normal but it never seemed to work. I wasn't fooling anyone anyway.

You weren't what sorry?

I weren't fooling anyone.

Right okay, you think people noticed that'?

Yeah something was wrong with me.

 

She's worried if she tells people they will see her differently. (Original interview in Cantonese...

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She's worried if she tells people they will see her differently. (Original interview in Cantonese...

Age at interview: 48
Sex: Female
Age at diagnosis: 46
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Like what you just said, you feel you are being very emotional, and worried whether you have slight depression. Do you find it difficult, as a Chinese, to share these with others? Or would you have any worries in that?

It's difficult and I can't tell others. If I tell others they may think I am a bit crazy [Chuckle]. You can tell them you are not feeling well, it's ok to say so. If you say about that, they will feel that you are different and will see you differently. 

How would that be like?

Some would say, 'don't talk to her that much, she's a bit depressed.' They would say so. There are people who have depression in our church, they may talk about it and repeat it as they forget, and others would find them troublesome and not feeling like to talk with them that much. If you were in their shoes and you hear these, you won't feel happy about it right? If it's nothing special it's better not to talk about it that much. Like when you feel ill, with your body, others actually can't help you. They could not help you, some may even step on you, 'You made yourself like that, and you should take it easy.' When they do so you would not want to talk about it further.

Some people said they felt embarrassed or ashamed about having a mental health problem, and a few were worried people would think they were “crazy” or would ridicule them.

 

Rehana hasn't told many people because she feels ashamed.

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Rehana hasn't told many people because she feels ashamed.

Age at interview: 49
Sex: Female
Age at diagnosis: 44
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I feel aged. Maybe I don't look it, I don't like, but I feel that. But inside I'm a broken, helpless and shame, and scared.

Why do you feel ashamed?

Because, you know, of the illness you know. I don't want to be poorly, you know. If I tell someone, you know, I'm ill with the depression and they might make fun of me. You know, that's why I'm ashamed and helpless.

So who is it that knows you've got depression at the moment?

Pardon?

Who knows that you've got depression at the moment and who doesn't know?

Only me, my husband knows and my sister-in-laws knows. And my mother-in-law used to know a little bit but after that, after her death it got worse really. When I had first attack she was living but, and she really got upset. But then she knows I'm the one who look after her. I used to take her everywhere that she wanted to go, and she was very safe with me, and when I had an attack and she was very upset. Not just a little she was very upset about it…

You said you had a best friend. Does she help at all?

Yeah, I mean though I don't tell her everything. You can't. Some things are secret. No, she don't know about my severe depression. Only she knows I'm suffering with a migraine.

And you don't feel like you can speak to her?

No, no. I don't have energy to talk about it to her. No, I don't want to.

What do you think will happen if you tell her?

Maybe she will tell around, which I don't want. Because she knows my husband's family and they are very close to her as well, so I don't want her to tell them I'm a poorly. I just want them to know I'm fit, healthy, happy, you know.

If they know that you're poorly, what do you think they would do?

They might make fun. I'm just scared. They might not. I'm not saying they will. They might not but…

You can't trust them?

No. No, I can't trust them.

People described how it upset them that others had negative ideas about them, just because of their mental health conditions. They said that there was more to them than just their mental health problem: “don't look at the mental health problem alone, I'm a person as well”. Several people felt it was important to challenge stereotypes associated with mental illness, but recognised that these issues had been around for a long time and could take years to change. Some were involved in campaigning and awareness-raising (see Hanif's story), including one woman who referred to herself as a “mad ambassador”.

Last reviewed September 2018.

Last updated September 2018.

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