Mental health: ethnic minority experiences
Recovery
Ways of describing mental health recovery
Traditionally, people with mental health problems - especially severe mental health problems such as schizophrenia - were not expected to 'recover'. Attitudes have changed and many organisations now promote a recovery approach. Rethink defines recovery as “a personal process of tackling the adverse impact of experiencing mental health problems, despite their continuing or long-term presence” and as different from a “cure”.
Many of the people we interviewed had a similar view of recovery. Many hoped for recovery or described themselves as recovered. People described short term recovery from an episode of, for example, psychosis or depression, as bouncing back or “like coming out of a trance”. Some people found it hard to remember what it had been like when they were ill, while others could remember details of how they had felt and behaved. Some described long term recovery as a “journey” or referred to going through cycles of being well and then unwell [see Hanif below]. Others referred to the ongoing nature of recovery or “healing” and the need for ongoing support. Some felt that they would never get rid of their symptoms but could improve and control them, including one man who described his diagnosis of personality disorder as “untreatable".
Sara's eating disorder is in remission, and although she feels a lot better and can function, she...
Sara's eating disorder is in remission, and although she feels a lot better and can function, she...
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I think I am probably depressed most of the time, still. And, but it's kind of like, it's not really, really severe, so it is kind of like I can function. So, I would say that now I am kind of like a functioning depressive. And I don't, I don't know, I don't really ever expect that I will ever be like kind of people who have never been depressed or people who recover and, you know, it has been my choice not to take medication for depression [sniffs]'
And, I think I, yes, I don't really enjoy things. Even things that I think I ought to enjoy I just don't, I mean I do have a laugh sometimes, you know, with like people, like colleagues and stuff and I am in a relationship. But I'm, I'm just, I'm not happy and I don't know why and I don't know what to do to put it right. And sometimes it just feels like it's too much hard work, just to keep myself treading water, you know, just to be functioning. And I think the difference is now is that I kind of behave better then I used to, And I think maybe that's, you know, in some ways it is because I am kind of better mentally, but in some ways I think it's also that I feel I have to behave in a certain way and, and appear to be normal, otherwise I'll, I'll end up in hospital again, or, you know, and I don't, I never, never want to go through that experience again. It was the most horrible thing. And I would rather be like, you know, in a low wage job and living a life of, kind of a dull life rather than back in the mental health system. At least I'm like a free citizen as it were, now. And I can pass for normal. Yeah, I think I pass for normal. Probably if people get to know me too well they realise I am a bit odd, or they might realise that I'm bit insecure about things. But I can probably pass for normal now, but I think that's probably as good as it gets.
Lorenz says he'll never get rid of his schizophrenia but he can control it.
Lorenz says he'll never get rid of his schizophrenia but he can control it.
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You don't think it can be cured?
Well it's like, it's an illness that's, I've been told it's an illness, well I know it's an illness, but I can't see any cure but it can be controlled, it's the controlling of it which is the important thing I think. You never get rid of it, it's like you have a scar there even if it's, you sort of control it, you always have some sort of, how should I say something that's, if you take away the medication or take way certain things it's going to come back, you know, so, that's something you have to live with.
How do you have to live with that though, I mean does that, is that something that you feel comfortable with, the idea of'?
Well now I have, when I first had the breakdown I, I've often say it can't be schizophrenia, it can't be, it's just that I was tired and stressed and so on. But I have it up to four times now and the second time I realised it's something I need to have some sort of medication to control it because it's the weirdness of you're not being yourself. I mean people say about when normality, it varies in other people, you don't know what your actual norm is, but if you recognise your norm and you find yourself out of this sort of what you think is your norm, then you want some sort of help. Now I feel that this was given to me by going to, having medication which the doctor gave me, , as I said before it wasn't right, didn't control everything but it did take away the psychosis and for many years I haven't had the hearing or seeing things.
Accordingly, some people who had experienced relapses or continued to experience symptoms still considered themselves to be recovered. Others, however, did not see the continuation of their symptoms in this way: “I still to this day have mental health issues: I just can't seem to get over it”.
Hanif thinks sharing experiences of recovery gives people hope. He still experiences "highs" but...
Hanif thinks sharing experiences of recovery gives people hope. He still experiences "highs" but...
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I think over the years I've managed to learn to cope, you know, I've kind of, you know, I've realised, you know' there are times when I become manic but I think now it's kind of I have learnt myself to manage my kind of highs and I try and do it without medication.
You know, so in a sense it's understanding your own kind of your own, your own body really or your, or your own but, you know, we are all different, you know, and some people have meant, some people work under pressure, you know, and, you know, sometime I probably finish, you know, a lot of work within two or three days which normally might take someone a week, two weeks, three weeks or planning and all that. But, you know, all of us are different, you know. But it's understanding that OK, you know, and I think once you realise and slow down when your body tells you I think, you know, you yeah you can manage the illness or in terms of my highs certainly, you know, of course there are periods when I'm not at, you know, I'm kind of going into that manic stage but I'm self conscious to say, actually to be careful, you know, and , you know, I need to take things, I need to take things whether it's work or whatever I'm doing, you know, slow down.
Several people felt that being well on medication was not the same thing as being cured. Some thought that a cure for mental health problems was unlikely because of the “scar” left by memories and experiences that caused mental health problems (see 'View about causes of mental health problems: social & environmental factors'). Although some people had experimented with stopping their medication and experienced a relapse as a result, many had come to terms with having to take it (see 'Not taking prescribed medication').
Dolly says medication is not a cure.
Dolly says medication is not a cure.
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Because of the medication?
No, I mean the medication is not the cure, is what I'm basically saying, because if it was a cure, I would be back to what I was before I was when I became ill.
Others felt unhappy about the idea of always having a mental health problem (see Marlene's story) and always having to take medication (see Niabingi's story). And, while very few people had hope for a cure, in the sense of no longer having a mental health problem, some still wondered whether it was possible.
Ali believes that his depression is caused by a chemical imbalance that will cause permanent...
Ali believes that his depression is caused by a chemical imbalance that will cause permanent...
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Right.
It's, it's like you're in a void, you get your, you get your leg amputated. So, you know, what I mean? Like it's unusual circumstances that get you damaged. So I think it's trauma, up down, up down, and your brain sort of becomes, you know, unstable.
Mmm' I mean in the analogy you've just used, your leg being amputated is pretty irreversible isn't it?
Yes.
Do you think that a chemical imbalance is something that's irreversible?
I think it's permanent damage, I think. For the time that I've had, I think I believe that it's permanent damage. It's I don't see it to be fixed in the near future. I don't. All I probably now expect is for it to come to a certain level, let me accept who I am, and probably move on from there'
I suppose my main question would be is there a cure? How, how the hell can you cure it permanently? Just get rid of it and be normal again. That's what I want to do. That's what my goal is.
The meaning of recovery could also be very personal.
For Mae, recovery was about finding herself and feeling glad to be alive. (Played by an actor).
For Mae, recovery was about finding herself and feeling glad to be alive. (Played by an actor).
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And I decided to stop drinking in the year 2000 and I haven't had a drink since. I didn't go to AA or anything, which I'd done previously in my life and it had never succeeded but it was because I decided. And from tiny, tiny steps, as I was telling me friend on the phone last night, from tiny steps I made big strides and here I am today, 62 years of age, gone through lots of different things in my life but come through the other side and the feeling that I get about recovery is just every day I'm glad to be alive. Now I'm currently suffering from cancer, I've had three operations but I never, I'm one of those who has never give up so it's something that I know I'm going to beat the cancer as well. So, and I have great help from [my key worker] who I see once a week and I know that if I have a problem I can just pick up the phone and, you know, as long as it's within working hours he's here. But apart from that I'm very happy and I'm so glad that I live own my own and I'm completely independent of any wife battering man who can drive you absolutely mental.
I wouldn't say that it's all his fault, I would that I was from, a very young age, you know, from what happened to me, because there's parts of my life that I cannot remember at all, it's completely blocked out and with the help my brother who I've now met forty years later, because we hadn't seen each other for forty years I'm able to piece together small bits of my previous, you know, my life growing up. So that's a, that's a big help but also, you know, just living every day for me is, it's fun, I just love it. You know, I look forward to being somebody, you know, just living every day and okay to other people it might not seen like much but it's something never had in the past, I would never go out, I was, before I came here I couldn't even get from my front door most of the time, like months I'd be indoors, you know, and just nervous all the time and worrying about other people.
For David, recovery means getting treatment and being treated seriously.
For David, recovery means getting treatment and being treated seriously.
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Hmm. OK. And you said there that you don't think recovery something's that's ever going to happen to you.
No. I think my quality of life can improve but apparently, because it's my personality, I've been told, this is the line according to my psychiatrist, and not just one, this is several, is that personality disorder, essentially, you can't, you can't cure it, you can only treat the symptoms and keep the patient comfortable. As far as I know. Personality disorders are to, to try and get me to change my personality I think would be like trying to change my DNA and change the way I look. For example, turn me into a white person. It's just not going to happen. Having said, the symptoms can be managed, which seems to be the case now with me.
Hmm. And so how do you feel about that?
Well, I take the philosophical view, or I try to, I mean, I've got a, a mental illness, I've got a personality disorder but then, you know, my mother's friend's daughter had leukaemia and she was at death's door and it was only because her sister was a bone marrow donor and it was a match that she actually survived. And, you know, there's loads of other people get a much rawer deal.
Signs of recovery
Many people recognised recovery as regaining things they had lost when unwell, including being able to cope and look after themselves, do housework, go out and go to work (see 'Anxiety, negativity, mania & loss of energy'). Recovery also involved a reduction in symptoms, such as fewer panic attacks or voices being less prominent (see 'Hallucinations & delusions'). Some people also referred to not having to go back to hospital. Many mentioned getting back to “normal”, although some felt that they could never have a “normal” life like other people and considered themselves to be a different person as a result of their mental health problems [see Dolly above] (see 'Ways of describing mental health problems').
Things that help recovery
Some people felt that it was important to take recovery one step at a time, and one man thought it was important to avoid measuring your recovery. Many people emphasised that recovery was not automatic but takes time, perseverance and hard work, including one woman who described it as being “like wading through treacle”.
Mae says nothing should get in the way of recovery and that you should approach one step at a...
Mae says nothing should get in the way of recovery and that you should approach one step at a...
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But yeah it's very complex all of it. If you, if you try to sort it all out [at] once you never will. So it's just like a strand at a time, you know, like I said earlier small steps turn into big strides and then, because it's amazing the way my life has opened up, it's, it's amazed me and I'm not easily amazed, I've got to be truthful I'm not [laughs], I'm usually the one who always sits there going, 'Oh yeah what, yeah right,' [putting on sarcastic voice] you know'
And I think once you cater for all the small needs then the bigger issues kind of start sorting themselves out anyway, I think so, yeah. I think with anything you do in life if you, you kind of, you know, if you, like for instance if you're at home and you're cleaning up you just make your food and you clean up after yourself instead of slinging everything around, then you've got to go back and clean up a big mess isn't it? So that's the kind of thing that we should be doing with our lives anyway is, you know, kind of sorting ourselves out just a little bit at a time.
That's a really good way to think about it I think.
Well I think so yeah definitely because then otherwise it becomes, because I know from the past if you leave everything like money issues and you haven't taken your tablets and you just think well sod the lot then, you know, I'm not doing well today and sod it, I'm going to go in my bed and lay down and I'm not going to, and so then you start getting ill again and you can't afford to let yourself get into that situation in the first place. So when you do start recognising your symptoms hopefully there will be somebody there, on the other end of a phone or perhaps a group you can go, even if it's just another mental health, mentally challenged person like yourself and sometimes they're better than the professionals I'm telling you, and give you better advice [laughs] that's true.
Edward calls his recovery a "major project"; he says recovery takes a long time but it's worth it.
Edward calls his recovery a "major project"; he says recovery takes a long time but it's worth it.
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And I won't say I regret the project, I'm very happy with the outcome but there were times when I wonder whether it would ever end, you know, whether I'd ever get to the fog sort of clearing and the cycle of, you know, okay one week and not so good the next, whether the cycle would ever end and I don't ever sort of get a chance to look at the view. But anyway, I'm looking at the view and it's alright so it was a project and it did last a long time. I wouldn't want, I don't want anyone to think it was easy but then again I don't want anyone to think that it was [intake of breath] too difficult to do. I mean it's a pleasure to do something like that because whoever I, whoever you are, whoever you are. Is that alright?
Yes
Whoever you are you are the beneficiary of your own strategy, you're the beneficiary of your own self help and therefore when you get to the outcome you feel much more edified by it than if it was imposed upon you by your parents or your teachers or somebody else, it's something you've done for yourself and therefore you feel really happy and proud that you've succeeded in well, breaking the code or whatever it is. It's like the enigma code, you know, fiddling around, this way and that way, and yeah it's good I feel glad that I'm able to tell you about it.
Nelsy says her recovery was hard work but it was worth it.
Nelsy says her recovery was hard work but it was worth it.
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And it's not just a falling down, it's falling down on my own, in a, that's why it's black my line, because it's a dark tunnel, not knowing where I was going to end up. And the way I see it I ended up in a, like a vacuum on my own with many other people in the same situation, others looking after them but not knowing exactly where anyone is going. So I think that I look back and I say, 'I have dug out with my own hands, my own path, very painfully, for a long time, very hard, but in the end it's been worth it'. And the path is open for anyone who wants to follow it.
A few people also mentioned the importance of forgiving yourself and feeling accepted; their feeling was that other people's perceptions could help or hinder recovery.
Having the right attitude is also important. Some people talked about how you must be tough and want to “fight”, including one woman who said that believing that you'll have a normal life was “as good as a cure”. Others felt it was important to accept yourself and the mental health problem, learn to live with it and just get on with life. Many people referred to the value of learning and understanding more about the condition (see 'Getting information about mental health'), recognising “danger signals” and getting the “tools” to control it. Some people made changes to their lifestyle, including avoiding situations that trigger their symptoms. Other things that were felt to help included stable housing, fast assessment, medication, natural remedies, and for one man, not having to go to work. (See 'What else helps'.)
Many people recognised the possibility of becoming unwell again, especially if they did not follow their own advice.
Last reviewed September 2018.
Last updated February 2013.
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