Mental health: ethnic minority experiences

Messages for others about mental health

People who have had mental health problems are often keen to pass on what they have learnt from their experiences to others in the same situation. We spoke to people who were at different stages of their recovery, and some were more hopeful than others about the future (see 'Recovery'). Most of the people we interviewed were keen to give messages that would inspire and give hope to other people with mental health problems and their families and carers, because they said they knew what it was like not to feel positive or hopeful.

There were 4 main messages:

There is life after being diagnosed with a mental health problem
Think positive and don't give up
Get help, support and treatment
Do your bit, don't leave it all to the doctors

1. There is life after being diagnosed with a mental health problem

“All is not lost” if you are diagnosed with a mental health problem - for some people it might even be the start of something better (see 'Getting a diagnosis'), even if it can at times be quite debilitating. Many people described coming to terms with having a mental health problem (see 'Recovery') and this was seen as a good first step to moving on after diagnosis.

Niabingi says all is not lost after being diagnosed, try to come to terms with your diagnosis and...

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Niabingi says all is not lost after being diagnosed, try to come to terms with your diagnosis and...

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Age at interview: 42

Sex: Female

Age at diagnosis: 25

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My message would be… [Exhales] don't, yeah don't, all is not lost, there is life after, I've said this before and even saying it on the reports, there is life after being diagnosed mentally ill or with mental distress or, you know, mental ill health, there is after, life after the mental health system. , you know, I would say sort of… I think, you know, there is something wrong, you know, I mean if, you know, you're behaving weirdly and stuff like that or if you've done something weird there is something wrong so you have to come to terms with that I think. And I think that was my biggest thing as well just coming to terms with there is something wrong. Or something has gone wrong at some point maybe not permanently wrong but that something has gone wrong at some point. I think try and come to terms with that and then don't, and then, and then be adventurous about what will heal you or get you better or get you back to some kind of normal state and you will be a changed person, I think you will be a changed person because after an experience like that I don't think you ever are the same, not necessarily mad forever but you will be a changed person. , you know, but a, be adventurous, try , you know, try different things that, you know, that can aid, aid healing and… yeah and I'd say listen to, listen to your inner self about, you know, what, what is good for you, you know, whether it's counselling or, you know, or, or, or therapy or a group session or, you know, or whatever just try and listen to yourself about what would be good for you.

Some people saw their mental health problems as a kind of “enabling disability” or “a gift” if you can learn to manage it. So although having a mental health problem could change you forever, it might be a positive experience and people pointed to various individuals in history and modern times who achieved great things in spite of experiencing mental health problems. One man wanted to give hope to others - if they could see he could do it, so can they (see Hanif's story).

Edward says life does get better because having a mental health problem is a 'gift' or an ...

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Age at interview: 59

Sex: Male

Age at diagnosis: 20

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So yes it's a gift as well, so it's an enabling disability. I don't know if I said that in my little, I don't know, but I have written to someone about it describing it as an enabling disability. And really the reason I'm here talking to you now is that I'd like other people whose relatives and friends, or they themselves are very anxious and worried about how it's going to pan out, I'd like them to hear me say this and tell them about this story because life does get better and it is an enabling disability. It never leaves you, it's a sort of a perceptual thing that never leaves you. But it is actually a gift if you can learn about it and manage it and get the best out of yourself. I mean it's no different from what anybody else is trying to do is get the best out of ourselves aren't we so, you know, it's pretty good.

Tariq is inspired by people with mental health problems who have gone on to do well because you...

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Age at interview: 21

Sex: Male

Age at diagnosis: 18

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I want to be a service user that does well and when I, the thing is what I draw a lot of inspiration from is the people that have experienced mental health difficulties and have gone on to do well. You know, like if you look back at history, you know, Winston Churchill had mental heath, he had very bad depression, , Abraham Lincoln, one of the greatest presidents of America, he had mental health difficulties, so I think that, you know, mental health difficulties people experience in their life but they can do well, they can make an enormous contribution to society and I tend to look at it in a very positive way because if you started looking at it negatively what, what will people think of you…?

Beethoven, the famous classical, he was, he suffered from mental health, what's that guy's name, the guy who inspired Mahatma Ghandi, Tolstoy, he suffered from mental health, he mentioned in one of his books that he suffered from mental health difficulties. Many of the most significant figures in the 20th century and even before suffered mental health difficulties…

To, that they too can persevere, even though they've got mental health difficulties they can preserve not to feel embarrassed of their mental health difficulties, that to continue with life and to keep on working at what they're doing and not to be taken, not to let anyone pull them down because I think that if you let that happen then what will happen is that you'll go down and it will affect you really badly. But if you persevere and if you ignore those ignorant comments you will persevere in life and I feel that I've persevered. Even though I haven't got a PhD yet I think I've persevered and I've shown people that through my experience I've positively done things constructive in my life that a lot of people can learn from and a lot of people can adopt to their own lifestyle.

2. Think positive and don't ever give up

Another key message is persevere and keep fighting. Many people said never give up and don't despair because things will improve - even though it might take time and even if things seem very bleak. One woman said “it is possible to get out of the situation even if you've been really, really low”.

Ali says keep struggling and maybe you'll find a solution.

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Age at interview: 27

Sex: Male

Age at diagnosis: 26

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I haven't found a cure, so I can't give like a very optimistic message to everyone, but I suppose 'Fight' would be the best thing. 'Don't give up and just keep struggling, keep trying. And maybe you'll find something, a decent solution one day', you know? It's all about fighting. But you do tend to feel unfortunate that, 'Why the hell do I have this?' But I suppose these feelings don't help. So at the end of the day, 'Just keep trying, keep fighting, keep trying to find new ways to tackle it.'

David says don't give up, don't hurt yourself and don't commit suicide because things will get...

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Age at interview: 37

Sex: Male

Age at diagnosis: 37

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Don't give up. Don't hurt yourself. Don't commit suicide. Whatever you do, don't kill yourself, whatever you do, because whatever happens things will get better, it's just that you have to put up with the pain. And you've got to deal with this pain while you, while you're here now. What you've got to do is try and get as many people behind you as you can. What you've got to do is not put up with any nonsense from the Government, and Social Security, from the authorities because at the end of the day most of them don't give a damn about what they're dong. Most of them are just jobsworths. The people that are going to help you are things like carers' organisations, The Samaritans, SANE, Rethink, MIND and a whole raft of other charities and organisations, those are the ones that are going to help you. And at the end of the day, although you're not in a good position at the moment you should do whatever you can to help yourself. Don't worry about what other people tell you about, 'Oh, you're not going to work,' or 'Oh, stop feeling sorry for yourself.' They're, most of them are, are just selfish idiots who have disappeared up their own backsides to be honest. Just look after yourself and if you've married and you've got a wife, look after them. Look after your family. And make sure they get the help that you need. And I would say, as a final word, don't feel ashamed, there is no shame.

Many people urged others to carry on living life “normally” and “keep on working at” whatever they're doing, whether it's work or education. They also recommend people “never give up on aiming towards something,” even if it's only to live happily with their family.

Others urged people to have a positive attitude - “don't say to yourself I can't do it, say to yourself I can do it” - and to be strong and never ashamed of having a mental health problem [see David above]. Others thought it was everyone's right to live a fulfilling life and urged people with mental health problems to value themselves.

Dolly says your life is precious and you have the right to live a fulfilling life - don't say you...

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Age at interview: 36

Sex: Female

Age at diagnosis: 21

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The message I would give is I know when you are at your worst it's a horrible thing and you don't know what to do' It's very to give a message to somebody because if they're in that horrible place, it's really hard to get them out. But, you know, your life is equally as precious as anybody else's, you know. You have the right to be listened to, and you have the right to, you know, to live your life in a fulfilling way. And that, you know, you can do it. Don't say to yourself I can't do it. Say to yourself I can do it. I mean if you say I can't do it, you're letting a sentence that isn't worth six or seven seconds rule, dictate your whole life. You know, rather say you can do it. You know, I am the proof and so many other people are the proof that you can change your life to be something that is precious and beautiful to you, you know. And you can't say I don't know what it's like to be in that horrible place, because, you know, I have my war wounds to prove it, but, you know, you can have an amazing life and you deserve it really.

She says try to be positive and look to the future; get help from organisations offering support and look at other people's experiences. (Audio in Cantonese, text in English).

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Age at interview: 60

Sex: Female

Age at diagnosis: 40

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To other service users, I hope they can look forward in life. Looking at problems and life in a positive attitude, and be able to draw strength from the stories of people who may have had similar experiences, but yet, have still recovered. I hope they are able to join more community activities, e.g. organizations offering support with mental health, and then you could broaden your horizons and not confine yourself. I hear that many people enjoyed the cruise organized by the [organisation offering support with mental health], or outings like going to parks. They really enjoyed it and I think that's really important.

3. “Don't wait until tomorrow” - Get help, support and treatment

Many people thought it was particularly important to seek help, support and treatment and to do it immediately. They said “don't be scared to ask for help”. They recommended going to the GP, or to support groups or mental health organisations (see 'Support from charities & support groups').

People also suggested trying different treatments, including talking therapy (see 'Talking therapies & ECT') because people need support as well medication. They emphasised that help is available if people want it, so keep on trying until you get the help you need, and change your GP or psychiatrist if necessary. People said it is important to want to get well.

Jay says whatever you're experiencing there is someone else with the same experience and however...

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I suppose really' [sighs] I wanted to just say that it doesn't matter what you're experiencing, there's going to be someone else who's having that same experience. It may not be in the exact same time zone or entire way, but there's someone. Because I thought I was quite unique, in a horrible way, but unique all the same. And over the last five years I have discovered that I am absolutely just a number of people who've had similar experiences, come through life, you know, dealing with things the way I have, ended up in the mental health system, you know, done the rounds, you know, dragged themselves up and started work and still living and breathing it. I'm not, I'm not that unique. There is always somebody out there who's going through the same or similar as you. And that it doesn't matter how hard it seems, it actually can be overcome. You just have to want it, want it more than it's, more, more than anything. Because it's actually easy to stay in the mental health system, because nobody expects anything of you. You can just sit there and vegetate. Because it, it's a lot easier. It's boring, but it's easier than fighting and clawing your way back up and standing up and saying, you know, 'I might have mental health, but I deserve respect like everybody else. And I am a member of society who has the right to go where I please and, and do as I please like everybody else.' It's harder to do that, but it's way more rewarding.

Talking to someone - whether a doctor, a friend, or people with mental health problems was thought to be a good way of getting support. One woman recommended confiding in someone because it would help to clear your mind. She suggested finding a good friend, but said if that is not possible, then make the GP your friend. Another woman suggested paying for counselling if it was hard to find someone you could trust to talk to. Talking to other people with the same experience was recommended as particularly helpful because they would be able to understand; as one woman said: “It doesn't matter what you're experiencing, there's going to be someone else who's having that same experience”.

People also thought finding out about rights and entitlements was a good idea. One woman who had been hospitalised against her wishes recommended that people get an advocate (see Sara's story). Others suggested finding out your rights while in hospital, and speaking to someone who can give advice about social security benefits. One man said “Don't feel guilty about claiming benefit” and suggested appealing if the claim is refused.

Ugo says knowing your rights when you're in hospital is important because she didn't know hers.

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Age at interview: 38

Sex: Female

Age at diagnosis: 31

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Knowing your rights, knowing what your rights are, who you can talk to, what can you ask for and what can't you ask for and everything. Just knowing what your rights are and what you can ask for and what you can expect towards treatment and meals and that. And knowing who your named nurse is.

So what kind of rights are you talking about can you'?

Your nurse and your section, if you're sectioned what your rights are under the section or if you're voluntary, what rights you've got being voluntary.

Okay and what rights, do you know what rights you have?

No.

No, did you know at the time?

No.

Okay

They don't tell you. They give you a piece of paper and you're supposed to read them but people when they're not well don't read them so it's better if they read them to you. Are there any other rights that you think people should know about, like specific things?

About what visitors, if you can have visitors or your children can come in and visit you and is there a room for them to visit you safe from the ward and all that.

And is that possible?

Yeah' not on all wards but in some wards they can so you need to know if there's a ward that, on your ward where you go if there's a room that you can see your children on your own.

So you were able to, to do that?

Yeah.

For people who have made a complaint about mental health services or are thinking about doing so, one man said to keep talking about it to the people in management positions and local councillors.

Michael says if you have made a complaint, keep talking about your experience to managers and...

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Age at interview: 49

Sex: Male

Age at diagnosis: 15

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I would like, like to say that don't ever expect an apology but be prepared to keep talking about your experience and not just to talk within the immediate circle who, who are caring for you but to talk to people beyond people in head office. People like local councillors. People who manage the people who manage the people who manage the people who manage the people. Don't just talk to a small circle of, of people. I would think that, that you, you need to make it very clear that you're, you're not like rebelling and you're, you're trying to seek clarification. You're trying to ask people to do things by the book. You're trying to ask for due process to be followed. And don't ever expect an apology but you might be pleasantly surprised to see that if you keep going after a few years some of the people who have wronged you might no longer be in positions to wrong others.

4. Do your bit - don't leave it all to the doctors

Many people added that there is a need to be honest with doctors and carers so that they can help. They thought people should trust their psychiatrist, listen to their doctors and “be a good patient” - though not everyone agreed with this.

Judy says be honest with your doctors and you'll get help.

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Judy says be honest with your doctors and you'll get help.

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Age at interview: 52

Sex: Female

Age at diagnosis: 22

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Yes, my first advice to people that suffer a mental breakdown especially and any other illness is to be honest and be truthful. Don't cover up the illness, don't tell your doctors no lies. And also no matter how you're feeling if you remember somebody says that work with me many years ago, just be honest and just speak your whole mind, what is happening to you and you'll get help. Because if you lie and you're not honest about it you are the one that is going to suffer' And also to top it off, to end it rather the Bible says thou shalt not lie.

Others said people should do whatever they could to try to help themselves, including one woman who said that people should try to work with their problems: “We can't leave it in the hands of the medication or the GPs and psychiatrists”. A few people recommended avoiding alcohol and drugs, others suggested getting information about the diagnosis, and developing coping strategies, like keeping a diary of their feelings or trying to distract their mind from depressing thoughts. (See 'What else helps'.)

Devon says don't use drugs or alcohol.

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Devon says don't use drugs or alcohol.

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Age at interview: 49

Sex: Male

Age at diagnosis: 22

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Every one has got a different way of treat, coping with' everyone has got mental health problems, everyone has got mental health, but you have got to look on the positive side of using it and the negative side. Some of the negative side, don't use drugs. Don't use marijuana. If, if you can't use marijuana, leave it. But some people use it because they say it helps their mentality'

But nowadays, people, younger folks using it for different reasons, some of them don't use it for religious reasons. They use it for like recreational reasons. To unwind. Or, or to use it to find out experiment with. But when you are young. I can use marijuana now, you know, it doesn't affect me. I'm older now. But if you are young I don't think you should use it. I've heard of stories of people using skunk, American skunk weed, it will make you paranoid. It will make you hear voice. It will make you think people are against you. I advise no young people to use marijuana. Not even alcohol either. To me alcohol is worse than marijuana. People say stop smoking, I think alcohol is worse. Alcohol makes you vicious, violent against your wife, against your family, whereas smoking doesn't. Smoking marijuana causes you to do no harm to no one at all. You're only harming yourself. Smoking cigarettes you are harm yourself. Well passive smoking. If you drink alcohol, it's a bad thing. It makes you aggressive, it changes your mood, everything like that. So alcohol is worse.

Something else that people strongly suggested was giving support to others with mental health problems - including one man who said that the care and love that people need doesn't come from professionals, but from friends, family and the community. Another man said people should look after their family and make sure that their carers get the help they need, although one woman said it was important to “fix yourself” first.

Devon believes people with mental health problems should support each other and help themselves.

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Age at interview: 49

Sex: Male

Age at diagnosis: 22

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I think we are a community of people within the community and one of the things that I think we should be doing as sufferers, or survivors or people with medical condition, is actually create our own community and support each other in our community. A lot of the treatment and services we don't do. We speak out about how we want them to change but it's down to professionals they are the one who are funding the money. But the one thing they can't give us is the care and loving. The care and loving doesn't come from professionals. They haven't got time to hug me and kiss me and tell me how much they love me, and give me sweet things, chocolate to eat. That comes from a different source that comes from your friends, it comes from your family, it comes from the community. It comes from your spouse, your husband, your boyfriend and that happens after you've finished the day time treatment. So I think that is what the other thing is. The care and loving that we need. A lot of people talk to me with their mental health problems. Like myself, when I first came here I didn't know my Mum and Dad. I came here. So I didn't have that bonding, or that loving and hugging from my Mum and Dad. I lost it. And through my life I still don't have that love and care from Mum and Dad. Now I am bigger I still don't have it. Only my Dad hugged me once you know, she was different.

She is a different person. I kiss my Mum. I say 'bye Mum, but she doesn't kiss me. So a lot of people ask me about their mental problem. It's about loving and caring. They lost that when they were younger and it affects them. Yes. A lot of people were abused as children. So that has what caused a lot of mental health problems. The loving and the caring goes. They don't trust people no more, you know, and stuff like that. Abusing babies and what do you think, paedophile and all that. It affects the paedophile person as well. They can't cope with it. That's why they go out and do it. And the people they abuse it affects them and all. So, but that loving and caring, that's the other part of the treatment which you can't get from the professional. That comes from the community. And we are a community of people within the community and we have got to support each other. Make our own community. And you know create our community. Like for instance there is a them and us thing. When we go out there in the community people might know you have got a mental health problem, you might not look different to the, but they know you have got that. There is a stigma against it and a discrimination taboo, you know, because of the label, and because of what it stands for. Which is people don't understand. So we have got to stick by each other and that is what we are doing now, creating our own, our own services buddying, you know, all these things. We're creating our own community now, so that we can meet in a safer environment and live in our community and people can understand us. So I think we should build our own community and help ourselves. Yes.

Last reviewed September 2018.