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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...

Age at interview: 31
Sex: Female
Age at diagnosis: 17
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And now I think, I mean obviously I am doing a lot better than I was in that I am working and, you know, well my eating disorder is kind of in remission and it is not like I never have thoughts about, you know, food and weight and stuff but I am a lot better than I was. And I'm able to cope better then I was. And I may get better, you know, even better in the future, I don't know, but I still, I mean I still have all the kind of low self-esteem depressing thoughts, like I don't think people like me'

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.

Age at interview: 50
Sex: Male
Age at diagnosis: 20
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I know I can't be cured really but what can help me to be better. .

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...

Age at interview: 49
Sex: Male
Age at diagnosis: 23
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I'm hopeful and optimistic that, you know, that every little effort that we all make collectively and I think individually we can't change perceptions or views but I think if more and more people do talk about their experiences which might, you know, generate hope and inspiration amongst others which is I think, you know, good for the wider, wider community or communities. You know, of, of, of people, or those who listen who hear, you know, good stories, you know, positive stories and say yes actually I was ill, I had medication. Some of them will have their own ways of how they got better and I think hopefully by that process, you know, we will, you know, surely but slowly, you know, will overcome, you know, the kind of stigma, discrimination which exists out in society, you know, against people who have mental health problems. And I think the more people talk about it and say actually, you know, I had an episode or episodes, you know, I got treatment, I got better, I have a family, you know, I lead a normal lifestyle now. I might still go through my ups and downs, you know, we all do we're all human beings, you know, it's how that we manage to cope with that process and it's understanding that. 

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.

Age at interview: 36
Sex: Female
Age at diagnosis: 21
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I have been on 22 different medications. The one I'm on now does kind of keep me, you know, on the even keel and does help. But then, you know medication isn't the be all, you know, and end all of it, because if it could cure me, I would take my medication and then just have a normal life like everybody else, but it doesn't work like that. I still have my kind of residual symptoms and my, I am a totally changed person from who I was before, you know. 

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.

 

Patricia believes that a cure for mental health problems is unlikely. She's got used to feeling...

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Patricia believes that a cure for mental health problems is unlikely. She's got used to feeling...

Age at interview: 25
Sex: Female
Age at diagnosis: 23
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And I mean you've mentioned a couple of times there this idea of recovery or, you know, whether there's a cure or not. What's your view on that is it something that you think you will recover from or not?

Do you mean that one day people will find a '?

Well or' or that one day you will not'?

Right

'Have this anxiety I suppose?

I don't think so. I truly believe without being well without knowing anything about, you know, medicine and anything about how all these things work in one's mind, I've always believed that there are events probably your in childhood or on your life that makes you. And this is why I say that I think that the death, the sudden death of my friend was a major thing in my life because I, I'd seen him two days before and nothing, there was nothing wrong with him. And then all of the sudden he's dead. That is I think that that caused, that must have done something in my mind. So I don't think recovery's very, is very easy because the things that happened you can't erase them from your memory. You can't erase, it just happened. It's in the past but it's still very the, the what, you hear in the situation, the people that were there are still very fresh in your mind and always will. That's I suppose that's trauma I don't know. So I don't think that recovery is very easy on this, on this thing, well with anything sort of mental condition I think or with mental health. So I think it's, I think the solution relies on the attitude and how we behave towards this. Not letting anxiety and panic attacks take on your life. And just dominate your life. You just have to think that you'll have a normal life and eventually they will go away. But they don't [Laughs]. 

I always tell this might, I always tell this to myself, told it so many times to myself, right now I'm experiencing a good moment. And the good moment is I might have problems with, in my life but I don't, I'm not experiencing panic attacks. But the following day it might happen anyway. So I can have one tonight and then the whole thing starts again so. It just doesn't happen isolated and that's the problem. It always, it always gets you by surprise. 

And how do you feel about the, the prospect of maybe always having to live with this?

I'm conformed. When, after you have like so many panic attacks, I used to, I remember in the beginning I used to say, 'Oh I remember that day when I had a panic attack.' I can't say that now because it just happens so many times. It can happen everyday during a two months or three or four months. So I don't, I'm just conformed. I'm just oh well. I just live with it. And I think that's a good attitude really to being able to, you know, that's how I am what am I going to do? Am I going to because if you always think about it, oh I'm going to suffer for the rest of my life? I'm going to be in agony for the rest of my life that doesn't help. It just gets you even more anxious. So all you have to do is just think that you're normal even though you of course there's not such as having normal people and abnormal people. There's no such thing. But you have to think that you will have a normal life anyway. That's, I think that's halfway through for the cure to be honest if there is such a cure. 

Can you I mean can you remember a time when, when your when your view shifted then from, from feeling like that was something that would happen from time to time to now coming to the realisation?

It's very gradual. And even when even when you're feeling very positive about it

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...

Age at interview: 27
Sex: Male
Age at diagnosis: 26
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No I think the chemical balance obviously is something to do with your moods and, you know, you've had these ups and downs, and ups and downs, and that sort of probably created the imbalance permanently.

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).

Age at interview: 62
Sex: Female
Age at diagnosis: 45
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So I moved into my flat in 1999, in the June, and I decided in the May of the next year, because I was coming here and I was getting support from here, I stopped seeing my CPN, we fell out, I couldn't get on with her and in the meantime coming here I started doing cooking, you know, cooking for all the, we used to have a kitchen downstairs and we cooked for everybody once a week and so I started doing that and then just generally getting into a good recovery with the people I was meeting was letting me know that I wasn't alone at last and I was able to reveal all the layers that were underneath the real me, as I'm talking now, the real me. 

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.

 

Imani is learning to live with her depression but believes it will pass. She finds it difficult...

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Imani is learning to live with her depression but believes it will pass. She finds it difficult...

Age at interview: 48
Sex: Female
Age at diagnosis: 47
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I think' I think we're kind of, we're, we're very close buddies just now, and we are learning to live together, but we're realising that there is going to come a time where, you know' it will happen, it will go and I will stay, but that is okay. Yes.

So you are looking forward to a time when you'll be recovered would you say?

Recovered. [Whispering; thinking to self]

What does that mean to you?

I think the word is' that I'll be well and I think because when you say the word 'well' you just can't help but feel positive and bright and even if the sun wasn't shining there would be sunshine there somewhere. 'Recovered,' 'recovered' sounds' as if and that is probably the most accurate word actually. Because recovered sounds as if I've been long term sick' and I am no longer long term sick. And' [laughs] Recovered [laughs].

Is that something you identify with?

No' Yes, because I associate recovery with addiction. And so I think of recovery, oh not even addiction, with a long term, yes a long term and maybe even life threatening because I can see it with alcohol dependence, drug dependence. I can see it with cancer or something like that, something that really threatens your well being, you know, your physical well being. 

But you don't see something like depression as something that threatens your well being?

Not my physical well being. No. But clearly it does.

Do you see it as, I mean you mentioned, recovery being recovery from a long term sickness. Do you see depression as a'?

A long term sickness yes' And where that sickness is a dysfunctionality, an imbalance, an inability to function at optimum efficiency whatever that might be. Yes, that's how I see it, but I' maybe, I don't know, maybe I just don't want to think about myself as being that. Yes. Maybe it is easier for me to think , 'Oh it's just an illness and it will pass.' With that I can handle it. But to think of it as something that I'm going to be, in effect, living with for the rest of my life, is kind of, deep. Hmm [Nodding].

 

For David, recovery means getting treatment and being treated seriously.

For David, recovery means getting treatment and being treated seriously.

Age at interview: 37
Sex: Male
Age at diagnosis: 37
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Well I think a recovery, which in my case is probably never actually going to happen anyway, is where you, you, you're diagnosed with a diagnosis that, you know, is a little bit more significant than what I had, and then given the appropriate treatment. And the closest I got to that was when I was 24 when they gave me Amitriptyline to try and deal with my symptoms. And that was a precursor to getting the proper treatment then. My, my penultimate breakdown, as it were. But for me a proper treatment, a proper recovery is where your illness is taken into account and treated seriously. I just feel that it was a, a case of patching me up and then sending me back out into the world again only to get chewed up and five years down the line back on the conveyor belt.

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...

Age at interview: 62
Sex: Female
Age at diagnosis: 45
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And I was told by somebody, I think it was somebody here, that you have to be selfish in a way, not selfish to be mean but selfish where you say nothing must get in the way of my recovery. Everything I should do should be for me and in a nice way, not a selfish way but to make sure that, you know, you're living your life how you want to live it and it's, you know, you're not being controlled by anybody else in your life'

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.

Age at interview: 59
Sex: Male
Age at diagnosis: 20
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I think it's fallacious to think you know something has gone and it will never come back. I don't mind accepting it. You see this is another thing, the self acceptance takes a long time because of all the stigma out in the community and in your own head space, you gain from your relatives and so forth, inadvertently when you're little. So, you know, it takes quite a long time to accept yourself as, because you can't see it with a camera, you can't measure it with the thermometer, you can't measure it with a ruler, that's what I'm saying. But the important things are the things you can't measure, okay? And well I'm happy and proud that I am what I am actually, quite honestly and but it hasn't been, it doesn't, that doesn't happen automatically you've got to really say look after yourself and work on yourself. And, of course, I've lived alone for years you know, that's what I said in my little spiel there, the talktative hermit, you know, you wouldn't perhaps think I live on my own to talk to me but I do, I've lived alone since my separation. I've lived alone since the 11th November 1990 more or less. Now that's quite a long time, hey? So you're looking at a lot of, a product here of a lot of soul searching, a lot of, a person who's spent a lot of time weighing these things up and trying to get the difference between reality and delusion and waiting and waiting and waiting and writing in the diary and all this kind of stuff as well as trying to eat the right kind of food and exercise a reasonable amount and so forth. there's been quite a lot of work, you know, so, so I'm talking to you at the end of a kind of a major project that's lasted about 17 years, you know. 

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.

Age at interview: 56
Sex: Female
Age at diagnosis: 48
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And yeah when I see, I mean I was having my life and I was going up and up and up and there so were so many, from so many different points of view that, the way I call it, 'a break down' is of course, my life broke there, and I fell down, that's how I see it, that's how I show it in my picture. 

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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