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Mental health: ethnic minority experiences

Losses & gains: impact of mental health problems on everyday lives

Having a mental health problem can impact on different aspects of life and many of these are interconnected: being unable to work may mean living on a low income and missing out on friendships and social activities. Here, people talk about how their mental health problems affected their lives.

Education
Many people described how having a mental health problem had affected their education. Some found being at school or university difficult, sometimes because they found it difficult to make friends (see below) or because they found it difficult to study and concentrate (see Tariq's story). As a result, several people described truanting (skipping school), having to leave school or give up their studies and having no qualifications (see Dolly's below). One man had to give up an adult education course.

 

Sara was "thrown out" of school after taking an overdose. (Played by an actor).

Sara was "thrown out" of school after taking an overdose. (Played by an actor).

Age at interview: 31
Sex: Female
Age at diagnosis: 17
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The school started saying I was depressed and I needed to see an Educational Psychologist. And I didn't want to go. I didn't want to see anybody. I think now looking back, I feel quite angry that they thought that I was the problem, when in actual fact it was my family that was problematic, but it was like they were pointing the finger at me, 'You are abnormal and you need to see somebody, a psychiatrist or a psychologist.'

 We went to see my GP and my Mum told me what to say to him, and she was there making sure that I said what she had told me to say, and so I just sort of said that I had classroom problems at school, which is true, I mean I did, I wasn't popular at school. I didn't have friends. I was appalling at games, which makes people very unpopular and yes, so I didn't have any friends and I wasn't, I wasn't popular with the teachers either, but I just said that I had school problems and it was just, it was an ongoing battle for like about four years, between the school and home. You know, they would look for any evidence they could that I was, because what happened, somebody wrote to them and said I was depressed and that I needed to see a psychiatrist. And they picked up on that, and I think because they were a private school they didn't want any kind of problems there. So they just kept saying to my parents, you know, 'If she doesn't see a psychiatrist she can't continue her education here. And they would look for any evidence they could, like you know, I wrote a poem, and like they would bring a poem, a poem, in on subjects, and they would bring it up, like two terms later and say, 'Oh, she wrote this poem so she must be depressed.' And it was things, that you know, it as just like they were looking for evidence that they could find, just to hassle me, and of course it made everything worse at school. It made everything worse at home, because they were going back to tell my parents. And my Mother was getting angry and saying, 'Why are you behaving like this, and letting them think there is something wrong?'

And yes, the whole thing kind of culminated in me taking a massive paracetamol overdose in my mid teens. And I subsequently got thrown out of school, because they said, 'That meant that I was going to be a problem to teachers and pupils and they didn't want me there.' [sniff] And that was when, I suppose, I did, finally get all the input from people who I hadn't wanted to see. I was made a ward of court. I was forced to see a psychiatrist, a social worker, a court welfare officer, a psychotherapist, and I never, you know, I never told them what was going on, because my Mum had this lie sort of ready fabricated and she told me if I didn't tell them why I had taken an overdose, they would, they would put me away.

One woman also described being unable to face going to university age 18: “when it came down to it, I just couldn't go”. Despite this initial loss of potential, several people did well in their exams and went on to go to university and get degrees or do other courses in the community.

Work
Having a mental health problem also affected people's ability to work; some had never worked, whilst others had lost or had to change jobs. 

 

Having a mental health problem led him to lose one job; in another job, he found it difficult to...

Having a mental health problem led him to lose one job; in another job, he found it difficult to...

Age at interview: 50
Sex: Male
Age at diagnosis: 20
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Saying that two factories I worked in I had nervous breakdown they always had to cart me out of the factory [smiles]. They call my, one, the first one come called my mum and dad, they got, carted me off to hospital. The second one called my wife, carted me off to hospital [laughs] so although the first one was my apprenticeship, you know my apprenticeship? And that's the time I said to you, I said to you, I said, they said “You must go and be rehabilitated but you won't be coming back here.” And I said it wasn't like that I couldn't do the job, I went elsewhere and got a job. Second one I did tell them about mental illness and I was slow at my work because basically I couldn't function because of sleepiness and tiredness and so on so I got the Speedy didn't I [laughs] which speaks for itself. So I got the nickname Speedy and coped with that and I had a breakdown at the factory.

But otherwise were they, were they sort of quite accommodating about… 

Yeah they were, yeah they're always understanding to a degree. They, there were no malice, I felt no malice there, I felt comfortable working there, but it's just that I was so precision in my work that it does take me long to do the work properly because I really like just to get it done right. And if it's done wrong I will let them know. If it's, I work to thousandth of an inch so when they, you work to 2000th of an inch sometimes and sometime it's just under the 2000th of an inch and this, I say, “Oh my God it's under the tolerance.” But the foundry man, the factory foreman he said, “No that will be alright, let it go. Although it got a tolerance you can give it a little bit more either way.” So luckily my job is highly scrapped by I always work to a precision size. I do know you can't actual, actual dead size, there's no way you can get a dead size but I work as closely to a dead size as possible. So they're aware of that, so they call me speedy because, but the thing is they're give me the job, they know, want the accuracy so I don't, but they call me Speedy and so on. I get the job which demands a lot of skill and concentration which I tend to lack a lot of after a while so I go round the back to have a sleep often, come back and do the job. And they're not really aware why, what I'm doing as such but they just say, “[Lorenz] had gone out the back again.” But it was only till I'd had a quick nap and feel fresh again. 

I drink coffee all the time, you know, I have, oh saying that about coffee and things there was an occasion where the drug wasn't working very well, I was so sleepy, splashed water on my face, at work, next time different, I thought that would wake me up but water, coffee, absolutely no. And that was the time I was mentioned about almost going into the machinery that was pretty bad. I lost the job about three months after that, they just said you wasn't up to standard but I couldn't really cope with that sleepiness I was getting. Drug was changed, tolerated a little bit better, still got the sleepiness and so on, it's continuously it is sleepiness but with all the jobs I must say the psychosis side of the hearing voices, seeing things, that's all disappeared so that's the good thing about them all. But the concentration sort of heavy head and trying to think through a cloud like remain through almost all the drugs until this present one. And it's the trying to do a job of work under a cloud of heavy head and thinking through a cloud, that's the way I can portray it. It's very, very difficult.

 

Anton had to give up his home and a job he loved and take part time work.

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Anton had to give up his home and a job he loved and take part time work.

Age at interview: 64
Sex: Male
Age at diagnosis: 45
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Anyway, so then in the last sort of three, four years, I found illness was getting worse. I couldn't cope. Then I couldn't even hold onto to my job. So, then of course in the meantime I changed jobs. Right. And then I've well my boss was quite a decent guy. We became very good friends. I said, “Look, I have got this sort…” I didn't want to say a depression. I said virus and everything and various other things. 

So eventually I couldn't hold my job and the company had financial problems and the job went. Then I tried to get other jobs, which I got job offers, then I did the job then three months time the depression came. I couldn't tell them it was depression. I said, “Oh my Mum is ill. So I'm leaving.” Like that I went through a sort of series of things.

So then I decided, look I can't hold down a full time job, let me do a part time, casual work. Then I was able to get casual work, which is not very satisfactory. Like they always give one of their permanent staff a lot more to do. Money wasn't very good. Right and you get treated badly. Well, part its, excuse my expression, when you are at the bottom you take a lot of shit. [Laughs] Right, but beggars can't be choosers. Right so I doing casual work and whenever the ruddy depression comes I will tell somebody this, “Oh I've got a virus and my Mum ill is. She's dementia. So I have got to go.” And they were quite understanding with the reason I left. And then started again I would ring these companies up, and say anything going?

So that is how I have been surviving right. So I can't do a permanent job. A secure job. All what I can do is casual job to survive right. But even these casual jobs, I can't tell the prospective employers that I've got depression, right. No one will touch me. Right okay they have what you call personal policies, all these lovely letters, but if they come to know, that is it. And also these days many apply for a job, so many people apply, it's the last thing they want, somebody with a problem. You see, so that's how I have been surviving, plus looking after my Mum and everything. That gives me a bit of a purpose, you know. So there we are. 

So I am still living in the hope that somebody some day will come along with illness, some sort of medicine and I may get over it. And I will bounce back. Although I am 63 plus, I want to work. I want to work until I drop dead because I enjoy my job. You see. That sort of a business. So that is the how the state affair.

So anyway I couldn't pay my mortgage right, because of various things, so I had to contact the building society, get rid of the house. I always lived within my means so I didn't have any financial problems. I sold the house. Fortunately my Mum was living in the local authority housing basis, then I came down here, and told them, “Look, I'm looking after my Mum. This is my condition. Where do I stand?” Then well it was sort of a grey area. I took a lot of advice from legal people and all these things. So I was living with uncertainty that if something happened to my Mum I would be on the road, because they, they will tell me you are a single guy, go, you know, that's it, go and find a room. 

Then I went and told my psychiatrist. He said to me, “No I won't let that happen,” because the psychiatrist, although he didn't give me any medicine the consultant we became great friends, you know. And he said, “Oh I won't let that happen. Under the Mental Health Act I'll make sure that you are housed.” But at the same time, the Mental Health Support Group I should be belong to, I used to hear horror stories whe

 

A former nurse, she's unable to work because she can't stay well for long enough and feels very...

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A former nurse, she's unable to work because she can't stay well for long enough and feels very...

Age at interview: 38
Sex: Female
Age at diagnosis: 31
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They think that it's just that I'm lazy and that I don't want to do nothing and that I should get out and do things for myself like go back to work' and that because they see me as an intelligent person but they don't see things behind, it's just they can't see the mental, where if you've got a broken arm you can see that you've got an injury, you know, with mental health they can't see it' I haven't been able to work because I can't, I don't stay well for more than six weeks' I was a nurse before I became unwell.

And that's been'?

Too difficult to work.

So have there been other spin off effects then from that?

Yeah.

With money?

Money and not having enough money, not being able to afford to give the baby money of a weekend.  So if he asks us for something and I have to say to him, 'I haven't got the money for you, you'll have to wait till I get some money.'

Mm and can you not, can you do any kind of work, 'cause some people'

No.

No? Some people I've spoken to do voluntary work'

Yeah, no.

But you can't? No.  How does that'?

It's very, I feel isolated because I had friends in work, all my friends were in work in London and I've got no friends really that are down here that I worked with, it's all friends from the mental health services.

People also described finding it hard applying for jobs and going for interviews. Some people felt they were too unwell to be able to work, although many said they would like to, including one woman who felt that other people did not expect her to be able to.

 

Dolly was told she couldn't become a writer because of her mental health problems but has since...

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Dolly was told she couldn't become a writer because of her mental health problems but has since...

Age at interview: 36
Sex: Female
Age at diagnosis: 21
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'Well the kind of I have discrimination from really, unlikely quarters you would think. Because I remember when I was on Benefits, the Benefits Agency went me to a Disability, Disability work kind of project. And the woman there was just so totally patronizing, and I said to her, 'I want to be a writer.' She said, 'Don't be silly. You can't be a writer. You've got mental illness. You can work in Marks & Spencer's or do photocopying in an office and I just, I just walked out actually. Because I thought, you know, how dare you, just. And there are some people who equate having mental illness with being stupid, for some reason, you know, being a bit thick, you know. And that is so not the case'

 My writing I mean, has been the reason I've, you know, stayed alive so long, and it's also now, proving to be a, a, it is not just a means of survival or expression, it's now a career actually, which is really good. And the hardest book to write was my memoir about my life, but it also changed my perception of myself in that once I read, I wrote my story of my life between 0 and 30 and I hated myself, you know, as I wrote it. Because it was, you know, so horrible. But after re-reading it I had empathy for myself. You know, I could understand that, you know, I wasn't a bad person, but I am a person who can love and be loved, you know. So it, it does, it empowers you in that really kind of, you know, strange way, that you have empathy for yourself. You know, because it is easier to have empathy for others than it is for yourself, especially if you have got something like depression. So it's been a, it's been, it has been really amazing to be a writer. It has helped me so much, you know. I have met so many great people and nice people through it. I mean I get letters or emails once a week saying how their reading of my life has changed their life. You know, I get letters from prisons even, you know, saying that they're going to change their life once they have left, you know, and that reading my life has helped them to do that, because I have done it, you know. So no, I am, you know, very happy to, you know, embarrass that woman who works at that disability project and say that I have become a writer and I don't work at Marks & Spencer's. So, you know.

I mean that is the other thing, when I had a new doctor and I told him I've written books and I was an extra in 'Star Wars' when I was little. You know, they think that I have seen them like grand delusions of grandeur until I have proven them wrong [laughs]. So it's not expected, you know, that you have a full life if you have a mental illness. But you can. Yes. Yes.

Have you always been able to work or'?

No. I mean this has only been, really, a viable thing, I think in the last three or four years. Before that I just wasn't together enough to work, you know. I mean I have done a lot of voluntary work in the few years. I have done that full week's, a week of kind of really stressful work but I have been able to do it, you know. So it's, you know, I do hope after I have done university, I will be a working person. I hope so. Yes.

Many people were able to work, some in paid work and others in voluntary positions, and had periods of not working or sick leave when they were unwell. Voluntary and part-time work seemed to be helpful for building confidence and helping people adjust to the workplace, although some were unable to do either. Some of those who were working said that aspects of their job could sometimes be difficult, particularly speaking in public, increases in workload and relationships with colleagues or simply because the work environment can be stressful. Some people felt that they had been unable to fulfil their potential at work.

 

Although she's a graduate she's working in minimum wage jobs.

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Although she's a graduate she's working in minimum wage jobs.

Age at interview: 31
Sex: Female
Age at diagnosis: 17
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I don't think I am capable of anything. I don't really have ambition or motivation. I work part time and I find that quite difficult. And, you know, I'm a graduate with a first class degree and the jobs that I do are minimum wage.

You know, not what you would expect someone to be doing and, you know that, I, I like them both, and you know, they're worthwhile jobs to be doing, but I kind of think that, you know, like, maybe if I hadn't been depressed that I could have done a lot more with myself. And then I kind of feel sad that I have to settle for less, because I have this thing that is with me and that I can't, I can't seem to shake it off'

I think one of the things that I have is a severe lack of confidence. I just don't have any confidence. I feel that I'm incompetent, I'm incapable, that I'm useless, that I can't do anything' And it's' I don't know whether it is true or not, but I feel that it is true and therefore I wouldn't even think of now applying for, I mean when I was on the dole I applied for all kind of jobs, because you just, you have to apply for a certain number per week, you know, it's what's available and you apply for it. But now I wouldn't even think of applying for it, a job that paid, I don't know, maybe what graduates are earning, because I would just think, well I'm not capable of doing that, I can't do it.

A few people mentioned having to balance the demands of work, home or social life and having a mental health problem. Feeling tired as a result of anxiety or medication was a particular issue for some. A few people had made special arrangements at work to accommodate their needs or found the flexibility of their workplace helped. (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).

 

After she became unwell in her new job, she made special arrangements with her manager. She also...

After she became unwell in her new job, she made special arrangements with her manager. She also...

Age at interview: 42
Sex: Female
Age at diagnosis: 34
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But in terms of working, as a person who has a mental health condition, I've been in my job three years now. The first year was quite easy. It was new, it was, it was fresh, it was building. I was so busy I hardly ever saw staff that I worked with because I was constantly out in the field talking to people etc, building the project. Coming up to the end of the year, then there were, there were problems, there were problems. I think I found it harder that somebody would personally attack me the way I am as a person than the work that I do. Nobody had any complaints about the work that I did, it was character assassination. And considering I took so long to build this perfect me that I was completely happy and contented with as a person, to have someone sit there and, and rip that to pieces, or attempt to rip that to pieces, was extremely disturbing for me. And it did cause me to really rethink, 'Well, you're not past it. You can become unwell again.' 

I'd actually thought that I'm past it. I'd, I thought, 'Right, I've sorted that one. I've conquered that. It's sorted.' I take my little pills every day just like everybody else. If you had cancer or diabetes or whatever, you'd pop a pill. I pop my pill and I'm good. And then all this things started happening and I realised that my health was not so secure and in the bag, and I could become unwell if I allowed external factors to really get into my head. Because once they got into my head, all my voices just went bonkers. They had a field day. 'See, it's not only me saying it. Look, everybody else is saying it,' sort of thing. So that was interesting. Becoming quite ill and having a lot of time off work was interesting in terms of how people viewed me. On returning to work, unlike most illnesses that you might get, part of my recovery was to do what I normally do. So I normally go to work, so, 'Go to work.' As opposed to you're still not 100 per cent, so you stay home. But in order for me to recover I had to start doing what I normally do. Which involved coming to work, which involved coming to work in quite a doped-up state and not being as coherent as I normally am, and having people just ignore you, like you wasn't even there. That people could actually come to your desk and pick up a piece of paper and actually do it as if you wasn't there, was quite amazing to me. 

That my place of work lacked a certain level of understanding. I mean we overcame it, but it was there. This desire for me not to be around because people didn't know how to take me. So it would be better if I stayed at home until I was better. So once again, 'let's just tuck the mad person away because they're making me uncomfortable' type scenario. And I must admit, it didn't help me to speedily recover, having to, to deal with that.

But I spoke to my manager about it in length, and we had to work it out. Because I thought to myself, at that point strangely enough it gave me the fight to recover, because it was an injustice. And one of my voices that are extremely strong cannot stand injustice. And she will kick my butt out of bed to try and effect change because she can't stand it. And something forced me back into work and, and challenging negative behaviour and stigma and forcing people to fear, face up to their fears and admit their fears, so that it can be talked about. And we got over it. It didn't happen overnight, but we did get over it. But it, it really did show me that, in 2006 as it was at the time, that these things are still going on. And you'd think that with all these equal opportunity this and DDA and everything else, that people wouldn't dare behave in such a way. But they do, they do. And it, it was like, 'My God. Wow. I can't believe it. And number two, it's actually happening to me.' It wasn't happening to somebody else, some

Despite the problems they mentioned, many people described conquering the difficulties they experienced at work. Some were involved in mental health campaigning or other user involvement activities, including acting as trustees, doing research, and speaking at events: "I sit on the board representing the service user. So I help people who are suffering, who can't speak up for themselves”. One man went on to set up an arts project and another woman wrote a book about her life [see Dolly above].

 

Devon describes how he came to form the organisation Sound Minds.

Devon describes how he came to form the organisation Sound Minds.

Age at interview: 49
Sex: Male
Age at diagnosis: 22
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And then I got involved with my local community, and joined my local community church. All this time I am suffering from paranoid schizophrenia and depression. But because I was suffering from that it made me want to do more of what I am doing. More of this music, more of this drama, helping people. Anyway, I got involved with my local Baptist church and then I got involved with the church itself, they made me Deacon, a Deacon in the church, I was preaching, taking Sunday School, doing entertainment within the borough in the hall of the church. I used to organised music events and at one of the event, the group that was organising it I met two people from my local hospital who knew me when I was admitted to the hospital. Because they know me and knew I played music, they said they were looking for me, they were looking for space in the community to do music with a few guys from the hospital, like myself. 

And I said to them, 'Oh, there is a space round the local Methodist Church. Let me know ask the minister because I know him. Because I meet him when I preach, I'm a preacher there. And yes, and he said they could use a space that they have got in the basement, of the basement studio which was a proper music studio, which actually had people working there professionals, it was a professional studio. But they had a bit of a problem with the church, they weren't paying and rent and stuff like that so the church got rid of them.

And at the same time I asked him so I said to the two persons from the hospital, 'There is space here.' So that is how we, I got involved with a few people at Sound Minds. It wasn't called Sound Minds then. It was just the music group. And then they asked me, they said, 'Devon would you like to get funded and run this, because you are a music man, you used to do music with the bands from Balham, for people in the community' So I said, 'No, I can't do that, I'm all, I'm sick, I'm all drugged out, I can't cope with that. But if you get someone else to do it with me I don't mind.'

So they applied for funding, they got funding, and then they employed someone from the community. We had advertising in the local, in the press and the national Guardian and they found someone and interviewed and I started to work at Sound Minds Black person and that is how Sound Minds started, plus I was working at the local hospital where I was admitted, they took me on as an OT technician to work with the same person who I spoke to in the community who started with the music with me. So he felt, he helped me to, to work at [the psychiatric hospital], to work at the hospital, so that I get some sort of background of working within mental health. And he, and my position there was an OT technician so I did that as well as working for Sound Minds I did three days at Sound Minds and two days working with the, in the hospital. 

I would leave the hospital grounds, come, drive down to Sound Minds, do a session there and drive up to, in the evening time, drive up to Mitchum, do a drop in at Mitchum and then from that time from 8 o'clock go home. And the next day do a bit of [psychiatric hospital], come back do a bit of Sound Minds. It was very hard work then, because at that time, people with mental health problems was working. I was one of the first person to work as a mental health patient full time and in mental health because of the project which was headlining down in the local hospital called User Employment Project, was a new thing. Where, the, the people who employed were people that were part, who had a sickness working within the same hospital that they were admitted in which was never done before. So I was one of the first people to be on that project and that is how I first went to work at Sound Minds and work as an

Housing and finances
Having a mental health problem and sometimes being unable to work meant many people lived on benefits and experienced financial problems. One woman built up debt from going on shopping sprees driven by her mental health problems. People thought it was important to know your entitlements and some struggled to get their benefits. 

 

David had problems finding somewhere suitable to live and struggled to get the social security...

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David had problems finding somewhere suitable to live and struggled to get the social security...

Age at interview: 37
Sex: Male
Age at diagnosis: 37
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Between 2001 and 2007 we had to struggle all the time to get what we were entitled to in terms of benefit. Adequate housing only came two years ago. Before that we were living in some pretty unpleasant places, with, you know, Victorian conversion properties, converted houses all turned into flats and they're all pretty nasty places to live in.

Noise was the biggest problem and that's something I'm very sensitive about.  I don't mind reasonable noise like people closing doors or even hearing someone using the toilet which I can even do sometimes in my own block as I've got pretty good hearing. What I don't like is music thumping away or people yakking away at the top of their voice on the phone. As my psychiatrist noted I am very sensitive to noise. 

Getting around now pretty much to the present, well things seem pretty settled now.  I, as I said at the start, you know, we've got somewhere decent to live,it's a pretty good piece of accommodation. It's solid brickwork throughout. My benefits are in place now so we don't have to keep chasing around x number of government agencies trying to get what we, we are entitled to sorted out'

I mean, I think mental illness is pretty bogus but, not just simply because it's a mental illness, it's pretty nasty, but it's people's reaction to it as well. They won't take it seriously and there's still this stigma, this idea that you're malingering, that you're, you're making it up. Just to, just to go on benefit, which actually is not a fortune, it's only just enough for me and my wife to keep our heads above water. And, yes, I get slightly more than unemployed people because I'm disabled but it's still not a fortune. And anyone who says otherwise is deluding themselves, I'm afraid. It's just enough for me to survive on. Which is fine, because I'm not working and that's not really a problem for me. I don't go out and spend all of my money on 52' plasma TV's or fancy cars, I just make sure I've got a reasonable diet. And of course, incidentally, while I've got diabetes I have to be very careful so most of our money goes on is fresh, good quality food which keeps my blood sugar down. Apart from that we live very simply.

People thought that having secure, appropriate housing was crucial for good mental health. 

 

Mae says getting her social security benefits and housing sorted helped her recovery.

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Mae says getting her social security benefits and housing sorted helped her recovery.

Age at interview: 62
Sex: Female
Age at diagnosis: 45
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Yeah I wanted to quickly mention it was like when I first moved into my flat obviously the money issue was a big one because I had to get a loan, they'll only give you a loan off the social whatever they're called. That was '500, that was to move, move me and for a cooker, that's it, that's all they would allow me. And I was living on '79 a week, I wasn't receiving anything else above that. And then when I came to, come to this place they had money advisors working for them and actually they've got their officers, apart from here, and they actually, people don't know about them which I think we should get to know more about them. I've got a, a great one, his name is [name removed] and he's the one who sorted out my pensions and got me on a, you know, something that I could live on properly and also on DLA because a lot of people should be entitled to what they're entitled to and they're not getting it so I really wanted to mention that. So it's, I don't know how you would actually access that so maybe it's something that could be looked into for people if they need to get access to, you know, the money advisor. Because I've put quite a few people onto it myself and it's been great for them too, because that is part of your peace of mind isn't it being able to live just day to day, week to week and know that you can actually pay your bills and not that have problem to worry about because then you could start, you know, that could start anything off in your head again. So that is just something I wanted to mention.

Okay and DLA is, what does that stand for?

That's for if you've got illness. I get the middle rate DLA because of the, you know, the arthritis and different things that are happening medically with me so I get that once a month and that really helps.

Right that's, is it Disability Living Allowance?

Living Allowance yeah. Some people qualify for it and some not but you, when you go to a money advisor what he does he works out exactly how much money you're going to get. He could tell me how much I was going to get for my pension and it was really good to know that actually I was going to be better off than [laughs] when I was, you know, working to be quite truthful [laughs] so yes it's been a great help for me. And as I said because it took quite a while for my pension to come through knowing that he was there to give them a phone call and say come on where's this lady's money and so on and so forth then it helped me. Because he did say to me, 'The first time I met you [Mae] you were seriously ill, you know, mentally,' and he said, 'The, the improvement over time has been great.' And I said to him, '[money adviser] that is partly because of you, because you've took a lot of my burden, you know, and let me concentrate on getting better in myself, you know, putting apart that, the worry of all of that.'

The money?

Yeah the money because it is a big issue for people, you know, it really is, because I, there's a lot of people that they're probably just living on the dole money and it's not enough. And, and some people are, you know, it's different, different things. Everybody has got a different story when it comes to money so once you go to an advisor he can tell you whether you're entitled, what you're, exactly what you're entitled to and, and help you all the way through that. He'll fill out your forms and do you phone calls and everything, especially if you're not up to it so that is fine I think. So I think that's another thing from mental health issue is to get somebody on your side to help you. It might seem small to other people but it's a big step for us, you know, yeah. Anything else?

Some described how having a mental health problem led to them lose or put them at risk of losing their home, including one woman whose accommodation threatened to throw her out because complaints were made about her behaviour, and a man whose house was at risk because he couldn't pay the mortgage [see Anton above]. A few people described having periods of homelessness. 

Relationships
Having mental health problems also affected people's ability to make and sustain friendships and other relationships (see Dolly's story). 

 

She says she's lost a lot of her friends since she became depressed. (Played by an actor).

She says she's lost a lot of her friends since she became depressed. (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 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.

Many people described tension and arguments in their relationships with partners or spouses, sometimes because their partner didn't understand their mental health problems. Some relationships broke down as a result. A few people described being unable to form relationships with members of the opposite sex.

 

Ali says he has problems with women and can't get a girlfriend, although he's always been able to...

Ali says he has problems with women and can't get a girlfriend, although he's always been able to...

Age at interview: 27
Sex: Male
Age at diagnosis: 26
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So basically I had, I've had massive huge problems with women. It's like some how I repulse them. I'm okay, I'm actually excellent with people who I want to be friendly with and I have, I would consider, excellent people skills. Wherever I go, everyone knows me, I know everyone. But starting the relationship with a girl is something that I've found near impossible. It's like, I don't know what is wrong with me in that respect. I've tried to analyse it so much, so much, but I couldn't. Sometimes I would come to a conclusion that, 'Okay, I'm not good looking enough', but then later on, you know, I would see that, okay, there are people out there who have good personalities and that's I think all there is that counts. But I think it's something in my head that stops me from doing it. I don't know what that is. I've never been able to identify it. Friends have always been there. I've always been able to make friends'

There was a period, about one year period, in the past two, three years where I couldn't even speak to a woman. That was something that was - and then people started judging me, and people started making remarks, and I became a real weirdo. It was like a very anti-social person who lost all the confidence, and very, very self conscious. I am all those things right now, but I sort of put a mask on me successfully. And I think it worked anyway. And that, I think that was the lowest point of my life, where I would feel so sad and so down that it was unbelievable, it was beyond help. And I don't think it was beyond help, but I never seeked help, that's the thing'

I mean I mentioned women. I mentioned my lack of competition, self esteem, confidence, but I think these things are lost because of depression. Depression is not there because of them. I think they are because I had depression and lost all these things.

Similarly, people described tension and problematic relationships with other members of their family (see 'The role of family, friends & carers'). One man found family events, visits and weddings very difficult.

 

Shaukat's always found it difficult to make friends and social situations such as family weddings...

Shaukat's always found it difficult to make friends and social situations such as family weddings...

Age at interview: 36
Sex: Male
Age at diagnosis: 30
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And it always felt difficult to make, make friends as well. So it just stayed like that for, you know, for like so many years I think up to like when I was 18, from seven. Didn't have any friends, I didn't really enjoy doing what I'd do, you know, I couldn't I hated like holidays because there was no, you know, sort of things to do because I didn't have anybody to go with that way. I used to enjoy sort of, well now, I used to enjoy going to school because it was something to do.

But then when I was there, you know, I didn't actually enjoy it. So, everything was like a chore. You know, I, I'd go there because I felt, you know, I'd be at school I'd be with people or I'd be with family that I didn't really get on with much on weekends, and the visiting relatives and things like that. And it, it took a long time to, don't know, say to adjust to that kind of, I knew in, in my mind as well that, you know, from people's reaction, my family's and that, that I knew they didn't understand me or they didn't realise what was happening. So I just, you know, I did, kind of got used to spending a lot of time on my own, say like if I wasn't at the library or at home doing my work I might go into town, go to the shops but mostly it'd be on own, on my own. 

I might meet somebody from school or, you know, relative in town but that I found that really hard because I didn't have the confidence, I didn't know what to talk to them about if I saw them, so I'd, sometimes I'd avoid them. You know, like, if I'd see somebody coming I'd, you know, either cross the road or go into a shop or and , you know, just found it really hard to do any sort of talking like that, you know, on the spot.

On the other hand I was like, in a way like forced as well to go, well not forced but sort of it's the cultural thing like, you know, with weddings and things it was like every, every time there was a family wedding you had to be there. And I'd find it hard really being there with lots of people and my appetite used to go all the time. I didn't really eat much a lot of the time I found it difficult eating, quite a lot of places. I mean, I couldn't force to myself to go say to the wedding or restaurants where they, if my family went or my cousins went, I might go with them sometimes but I wouldn't eat much and I wouldn't say much during the meals and things. 

 Sometimes I'd, you know, feel physically sick because I'd, so like that kind of thing, you know, I knew that I didn't , you know, I didn't fit in. But, on the other, I just kind of blamed myself as well because I thought oh it was just me, you know, I can break out of it or, if I do more things I'd learn about it. And I was expecting to, like you know, sort of collapse one day with this, you know, with the anxiety and stuff but it never happened.

It never, you know, it's like, so I'd always manage to sort of always, well I get through situations like the, you know, exams and things. I found them quite difficult and even though I was good at , you know, did well in them, in my school and initially I just always anxious about you know, how well I'm going to do or how badly I'm going to do. So I was always constantly worried about them. But the sort of fears never materialised so I just thought, you know, I'm just going to either get better or just going to collapse and that's how people will realise, you know, there's something wrong. But nobody really seemed to notice because I think I'd been like that for so many years that people just, you know, thought it was just me.

Some people lost their ability to care for their children, and a few had even lost custody of their children. Several people mentioned the burden on their families and a few women felt their mental health problems had put pressure on their kids and even affected their schooling. A few mentioned being short-tempered with and even beating their children.

Everyday activities
People's ability to undertake or participate in everyday activities was also affected. Some people were unable to do housework, cook, read, listen to music, watch television or do sports, including one man who said, “I used to be quite, a very enthusiastic young boy when I was young. I used to play a lot of sport, I used to run around, but now all I do is lay on my bed and just drink”. Some found it difficult being in public and consequently, could not go out, go shopping, use public transport, or eat in public. Some people avoided certain social situations, such as the pub. 

Outlook on life
Some people described living with a mental health condition as “miserable”, “hell” and “horrible”. Many said that having a mental health problem “takes over your whole life”. They felt that their mental health problems affected their confidence, identity and independence and took up a lot of their time and energy: “I haven't really done very much with my life”.

 

She feels she has lost control of her life since she became unwell. (Audio in Cantonese, text in...

She feels she has lost control of her life since she became unwell. (Audio in Cantonese, text in...

Age at interview: 60
Sex: Female
Age at diagnosis: 40
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Before I was ill, I could do a lot of things for myself. Everything was normal. I could take care of myself; I could manage my life well and very smoothly. But since I became ill, things started to go wrong. My illness means that my mind does not function properly; as if my mind is not entirely under my control and that I have to do what my mind feels like doing. People who haven't experiences this would obviously find very difficult to understand. Whatever tasks you want to perform is always under your control, right? But what I am doing is not entirely under my control.

As a result of not being able to work or go out and their problems with relationships, many felt isolated and as though their potential to live a full life was limited: “I am always trapped at home”. 

On the other hand, many people reflected on what they had gained from having a mental health problem. Some felt they were a “better person” because they had learned something and felt they had gained various personal qualities including sensitivity, self-expression, knowing themselves better, people skills, not taking things for granted, dignity and strength. Some referred to mental health problems as a “gift” or in the words of one man, an “enabling disability” (see Edward's story). One woman said, “I have absolutely no desire to be anybody else” although another commented, “I am a survivor, but having said that I still prefer to go without these awful experiences”.

 

Jay says she wouldn't want to be anybody else and feels that not all her difficulties can be put...

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Jay says she wouldn't want to be anybody else and feels that not all her difficulties can be put...

Age at interview: 42
Sex: Female
Age at diagnosis: 34
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But, yes, it's been interesting.  I have absolutely no desire to be anybody else than who I am, because who I am is quite good. The greater part of it is quite good, because I've learnt to manage it. There's wobbly bits, but who ain't got wobbly bits, you know, in their life and in, in their confidence and in, you know, their aspirations? Everybody has it. And I think that is the biggest learning curve that I've ever gone through in terms of my experience of mental health is that not everything is about my mental health. Because life is full of woes and problems and issues and challenges. And it's not all about my mental health. Sometimes it's just about life. And, yes, I think that's the message. Sometimes it is just about life. And mental health is part of your life, but it's not everything, it's not everything. There is a lot more of you than just your, your condition and what makes life difficult because of your mental health. What about your talents? What about your personal aspirations? What about, you know, how you make other people feel around you? You know, what about the greater world? Well, it's all well and good saying, 'Woe is me. You know, mental health and ra, ra, ra.' But what about some of the atrocities that are happening in the world? What are you doing to effect change? Because you can't only blow your trumpet for your own cause, you've got to, you've got to get out there and be counted, you know. I suppose it probably sounds a bit, I don't know what the word is, but a bit whatever. 

But, you know, it's, it's about a bigger issue than mental health. Yes, we're discriminated against, we're stigmatised against, but there are other things in the world that are terrible too. And are we going to stand up and be counted generally as a human being, as opposed to just standing up and being counted as someone who has mental health? I'd rather someone say,'Oh, yes, and Jay was crusading against an injustice about whatever. And she has a mental health condition,' as a secondary, rather than the first. 'Jay manages a project because, you know, she has a mental health condition.' Just, 'Jay manages a project and she helps people' rather than that, because that's still kind of stigmatising me in a, in a way.

Despite the consequences described above, not everyone felt that having a mental health problem was a barrier to success and many talked about helping and inspiring other people, or just getting on with their lives.

Last reviewed September 2018.

Last updated November 2010.

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