Mental health: ethnic minority carers’ experiences

Support from spirituality and religion

While 'spirituality' means different things to different people, it usually involves people trying to understand what lies beyond the physical world that we can see and hear. Spirituality can, for example, mean believing in a higher power, looking for inner peace, trying to find a reason for things that happen to us, believing in life after death, seeking to forgive others for their failures, or attempting to feel connected and in balance with others. When the people we spoke to talked about their spirituality many were describing very personal journeys.

For Nita, coming to terms with her mother's mental health problem has been a healing spiritual...

For Nita, coming to terms with her mother's mental health problem has been a healing spiritual...

Age at interview: 46
Sex: Female
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For me spirituality is about, it's about love, and it's about finding love in oneself, and, and I was saying to you that I'd been on a healing journey. And about understanding what had happened, and, you know, forgiving people who you thought had let you down, when they hadn't because they were doing the best they can. And about letting go, and it was about, it was about principles and values, which were all around, you know, what I wanted to be. I didn't, if I'd harboured, -if I'd carried on harbouring a grievance against my mum, and not healing my past, you know I think I would have been quite bitter. So it was about going on my journey, and sort of finding ways to understand it, and to accept it.

And having been on that journey what are the core values that you have landed on?

About accepting people for who they are, valuing diversity in people, and just honouring people and their experiences. And not -as much as possible- making judgements on anybody for whatever reason, whether they're ill, or whether they're a carer, or whatever. You know. And I know my mum did the best she could, so I appreciate that, and honour that. But I think the other thing is that it's made me a more, probably a more tolerant person, more understanding.
 

Religious communities organise their spiritual beliefs, practices and rituals in different ways. There are many different religions in the UK and we spoke to people who follow Islam, Hinduism, Christianity, Sikhism, Buddhism, Jainism and traditional Chinese ancestor worship. This page focuses most on Christianity because the people we talked to discussed this religion the most.

Some people were deeply religious, such as those who described themselves as Evangelical Christian. Others saw themselves as more liberal in their religion, or even as just spiritual without belonging to a religion. Others still sought support through self-development (for example yoga, meditation, positive thinking) and philosophies such as Taoism, which focuses on the links between people and nature.

Marcie grew up as a Catholic, but now finds that learning from philosophy helps more.

Marcie grew up as a Catholic, but now finds that learning from philosophy helps more.

Age at interview: 72
Sex: Female
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I don't know whether I have a religion anymore. I used to, well I'm a Roman Catholic because in Italy everybody is, most people are Roman Catholics anyway, so is Larry actually by the way. But we weren't practising. I don't, -I don't know what I believe in quite honestly. But this was nothing to do with the Alzheimer, it's sort of an evolution that has happened through the years. You know, as you grow older you question all kinds of things and I do, -what I have found actually was, I used to read a bit, I started with the Observer actually. They used to, -they don't have it anymore, they used to have a page called The Barefoot Doctor, and he was always citing the Tao and, you know, Eastern philosophy, Buddhism and things. And I found their way of thinking much more helpful. Because they deal with situations, you know, they, like they say, when the tension or the pressure is, -just let yourself go because you will reflate one day, you will float again, you will. You know they have, actually the imagery is quite good. I like the imagery of human situations, you know. So I found that helpful. That is, -it's not a religion but it's a spiritual sort of, but I am, I do believe in something, I don't know what I believe in. I do believe in good, in goodness of people, yes, I believe in something of the, maybe the soul, the mind or something. But it's not a formal belief. I haven't got any formal belief really.

So you don't have a congregation that you get support from?

No. I would go to church sometimes. I do go to church and I sit, because I like the quietness, there is nobody, there is one in [name of place] I quite like the quiet atmosphere. And maybe I light a candle but I don't know why. It's just a way of feeling that you're communicating with the whole of the human family really, basically. It's a sort of feeling that you are, trying to, to get in touch with the, all the people who, you know, are battling their particular battles. We are all here sort of struggling, aren't we? We are all strugglers. So that is the sense that, you know, the church makes me feel that maybe I'm in touch. There in the quietness and with, maybe you are sort of touching and reaching out for people who are struggling like you, or people who are not struggling even, it doesn't matter. So I have that feeling of, -I have a feeling that my congregation is really the human family. I have a feeling that we all belong together in this planet and we are all struggling and we are all sort of trying to get by and to sort of do our best. Well, most of us are anyway. And that is what keeps me going really. I do believe in something but not in any formal thing. So that is not something that would, -but reading about, especially about Eastern philosophy, yes, that's been helpful to me.

Some of those who got support from their spirituality or religion described their faith as giving them strength and comfort during difficult times. For some, their spirituality was their only support when things got tough. People said spirituality and religion could help you in a whole range of ways including increasing emotional strength, avoiding bitterness, feeling blessed by God, feeling comforted when reading religious books, providing helpful ethics for living, feeling inner peace when visiting places of worship, and feeling supported by other worshippers and through praying.

Sophie explains how coping with adversity is part of life, and spirituality or God can give support.

Sophie explains how coping with adversity is part of life, and spirituality or God can give support.

Age at interview: 42
Sex: Female
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I've always been a spiritual person, a religious person in the sense, whatever, and I just think, well, these are the cards that we've been dealt in life and we just kind of have to cope with it and work with it and do the best we can of it. I think peoples' misconceptions that life is always going to be wonderful, you grow up, you have a wonderful childhood and you have a wonderful mum and dad and you leave home and you go to Uni, you get married, you have children and life's wonderful and then you die and that kind of stuff, but life's not really like that. I think we forget that and because of the experience that I've had in our family and what our family have had, it's made us look at things a lot differently than maybe the other average person and say well life isn't like that and there's pitfalls and you just have to make best of what you've got. Yeah, that's how I see life and how it's been. So, yeah.

Do you go to church, do you…?

I used to, I used to but I don't need to in the sense of, that's just a building with a few people in it, I think it is about my spirituality that I have and the connection that I have with my God, that's what helps me and that's what gets me through every day things, not just my sister's stuff but my own stuff so I guess coming from the BME community, you know, religion plays quite a role for lots of us and it is a good fortress. It is a good fortress in times when you feel as though you can't take it any more and you don't know where to turn, you feel like a good cry and hope that your prayers are answered. It's good because I think it's something else along with talking to a friend, it's something else so that's been good for me.

For many carers, having to take control in difficult times can feel hard (see 'Taking control - difficult situations and medication'). Some believed in a higher power (for example God or Allah) who is in control over people's fates and that this was where they placed their trust. Believing in a higher power who has the overview and knows best was described as helping carers accept their lot because they saw it as part of 'God's plan', 'the way it is written', as 'a cross to carry', or as part of the cycle of birth, death and re-birth (reincarnation). 

Some carers felt that their close personal relationship to a higher power could give them peace of mind, make them feel safe, and provide companionship.

For Emily, becoming religious helped her to cope and gave her an understanding which helped her...

For Emily, becoming religious helped her to cope and gave her an understanding which helped her...

Age at interview: 36
Sex: Female
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Well, when I attend the meetings and people are scared to do different type of caring. I realise that there was a blessing for me, I realise, a blessing that I've got because some people are saying, 'Oh, it's very hard and I can't get any help from this system and I can't get no form of help and they put things in places and it's not working and so on and I realise that well, it's not so hard'. It's hard but it's not so hard for me, I've got that understanding and that peace of mind.

So that makes you luckier then than many of the other carers, or in a better position perhaps?

Well, I might be because I know the God that I am serving so might be that is why I can be at this peace. And the way of the Lord has provided for me, he has came through the situations where I've got the papers and the support. I am so blessed and I have to just thank God. That is why I could really share, because if I didn't know the Lord I couldn't share because it would, -oh, I was so stressed before I couldn't share what I'm going through.

Was there a specific time when you felt that the peace, you, you received this peace, was it one incident or was it over a period of time?

Well, it's over a period of time because while I was going through this situation with my husband as a carer I was not a Christian at that time.

I see.

It is, -I was not committed because before I was attending church but I was not baptised so then when I became baptised and I've got a spiritual connection, reading my bible and understanding what is going on in the world and these form of sickness, I realise that the Lord has blessed me and give me the peace of mind I talk about.

So when was that, when was your baptism?

It was a few months, it was in March.

This year?

Yes, this year March.

So it's relatively recent.

Yes.

How did that feel?

It feel, -it's a blessing, it's a blessing to know that you have been saved because what is going on in this world no man can put a stoppage to it, no man. No man can, no matter how much authority you put in place with the police or so on, it's just, -it won't stop, it's just evil continually, evil, evil, evil. Sickness, murders, whatever you can think about. So there must be an end -he's going to put to this situation, so it's just spiritual, just spiritual. So that's, when you got that understanding you have a different, -a peace of mind, you love people more, you'll understand the system.

Anne maintains her personal relationship to God and that helps her to cope.

Anne maintains her personal relationship to God and that helps her to cope.

Age at interview: 40
Sex: Female
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In a personal relationship with, -because I feel like, as if God's sat here with me, he's here with me all the time, wherever I go I can talk to God. So through prayer, and I believe I can talk to him like I'm talking to you. So, that he's interested in my everyday life, and then reading the Bible. So I get a lot from scriptures and, if you're reading it's like something, you know, just hits you in your face so you can think, 'Oh wow', that scripture just really speaks to you, gives me a lot of comfort and a lot of peace, and a lot of hope for the future. And then I feel, -like I can read a few lines and think, 'Wow that's God speaking to me'. Like in Job for example, I was reading it once and it said, 'Submit to God'. No sorry, 'acquaint yourself with him and be at peace, and surely goodness will come to you'. And it was like God, from that I got, yeah, just be with God. Submit to him. 'God you're sovereign, you know what you're doing in this situation, I don't', and then I can have peace. And so as I think like that, I can have peace whereas if I was bitter and full of anger I'm not going to have peace. And then going to church, worshiping God being, you know, in praise and thankful for everything I've got in my life. So just putting a worship tape on and sometimes, I'm just stood in the kitchen, could have been a horrendous last four or five hours, go in the kitchen, washing up, put the, -a worship tape on and then I'm just, well I'm in God's presence and everything just slips away. So the past four hours it's like, 'Well, God you've seen everything. You see what I'm trying to do here, you see I'm trying to do my best and I love you', and that's it. And then listening to great teaching as well, being in a church that's got great teaching and sermons and that I find really helpful. And then being in Christian groups like the Mind and Soul, that's been really, really good as well, yeah.

Many people regarded praying (which could involve talking to a higher power as you would another person, reciting religious words, requesting help and guidance, or expressing gratitude) as a key kind of support. People said that prayer could do things like help 'calm you down', give strength, and help them grieve. Some thought prayer helped their loved one who had a mental health problem to get better.

God determines good and bad times, but our prayers can be answered in times of need.

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God determines good and bad times, but our prayers can be answered in times of need.

Age at interview: 52
Sex: Female
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Have you got any help from the religion? 

No, we do not have much interest with religion. 

Like people say that if you worship more, it helps you. 

That's true, you can not say that whether the Lord has helped you through prayer or medicine but you got to believe that the Lord has the power. We do believe in that. I believe that if we got good or bad times that all is our destiny from the Lord. 

But you have not given more attention to religious activities to get help to get a real difference? 

We do believe that. We do believe that if something good has occurred to us that is because of the Lord. 

From religious point of view, have you ever thought about your bad times, why it happened to you? 

My husband used to say that whatever has happened to him was part of his destiny and he felt that he was better off when compared to death by heart failure. The doctors pulled me out when his heart stopped beating and his head became motionless in my hands. I had started crying calling the name of whom we believed in. After the shocks, his heart started beating again. So I felt that my prayer was answered and he survived. 

He was saved? 

Yeah, maybe it was destined to be like that. May-be he had to be around for the marriage of his daughters or maybe it was for me as well. 

And how do you feel when you think on such lines? 

I feel positive and realise that someone is looking after us and relax. 

Your burden is lightened with this feeling? 

Yes.

One person's experience as a carer had changed how he thought about prayer. Instead of waiting for miracles from God he now thinks prayers are answered by people helping each other out.

The way Anton think about prayers has changed since he became a carer.

The way Anton think about prayers has changed since he became a carer.

Age at interview: 63
Sex: Male
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And also even my preaching has changed quite a lot, because now I, -after the going, after my going through stuff, after caring for my mum and everything, now I'm very realistic when it comes to preaching. Because when was it, a few, a year ago one of the churches I went, there was this lady, her husband got a heart attack, and he was in hospital, and she was feeling the strain because she, she was working. And it's not something where she could say like give me a week off, it's going on for some time, then she'd got two little kids to look after. I was planned to preach in the church, and then I was in to the lady, and she said these things. Now a few years ago I would say, “Oh let's have a time off prayer”, I would have said, “Oh let's pray about so and so, husband had a heart attack, and God will give us a wife's strength to look after the husband, she'll run round the house and everything”. What I did was -a novel idea, I said, “Today you're going to see some answers to prayer, how God's going to answer some prayers, you're going to see some miracles happening, are you going to answer a prayer?” Then I said to the, example about this lady, the actual problem, -now I said, “I want a few show of hands, now who is going to man the house while she goes and visits husband in hospital? Who is going to do some shopping for her?” So many hands went up, I said, “There's your prayer answered”, you know, this is it. It's easy to say, “Oh, God do this, do that”, and everything, but according to Christian theology, God is going to use us, through us he's going to help people. So I said to you earlier I used to be on the Evangelical wing, now I made a great leap to the, -what do you call- liberal wing. Now I tend to think the practical way of helping somebody, so my preaching and theology has taken a great leap forward, five or six forward.

Some carers said that, although they do not see themselves as religious, they did have a strong sense of being spiritual, and spirituality helps in being able to care for someone else. Spirituality helped people see the bigger picture; it gave meaning to experiences and helped them to cope with life's frustrations, anger and grief.

Ramila describes how religion and spirituality offer strength and understanding.

Ramila describes how religion and spirituality offer strength and understanding.

Age at interview: 56
Sex: Female
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I've recognised, I'm, -I don't know at what stage I recognised it but working with mental health services, I've always recognised about the stress that carers go through. And I've been just fortunate because I do this leisure, come extra curriculum activity, which is philosophy, which is, -which for me gives me a, you know, huge, huge deal of support, because it takes me away from my normal circumstances. I find the time to do it. It gives me company of other people, like minded people, it gives me loads of activities, loads of ways I could work at my skills or other things that I want to, or would want to, or other hobbies, so to speak, of reading or developing say, things like calligraphy and music, or singing or acting, or, you know, reading Shakespeare or, there's such a huge, huge deal of activities being offered that if I wanted to I could participate and being offered really, together with my spiritual needs of development, which is what I look for as well in this, -my main way of looking at this sort of philosophy.

I suppose as, when we come across in, -as a human life, we come across these tremendous difficulties in our life where we're bashing our head against a brick wall, so to speak, where we feel that maybe there isn't a solution, or no solution is, -we think there's a solution but it's not being provided in our lives, then -I think spirituality or religion offers a strength. It offers support. It offers an alternative explanation. I think this type of religion I follow, combined with the philosophy which is very similar to that, offers that at the end, -it offers explanations around, it's quite difficult for me to explain, but there are reincarnations [you know] that, as human beings we carry our own burdens to a degree. If you do wrong, then it's not a punishment but we just are reincarnated and we pay back. We might be paying back in this life as well, of the wrongs we do, or the hurts we cause but, so, so in a sense the explanation would be that my brother has come with his own life to lead, his own burdens that he's carried from, maybe from a previous life or this life, which he needs to live through and work through. And that's how the circle goes on. There's this circle of life. But my spirituality is around, -there's this tremendous, tremendous power, which lives in each and every one of us, so we're all the same. Irrelevant of colour, creed, gender, orientation, sexual orientation, we just, -that's the spirit that keeps us moving. And if you can only recognise it, if we came to the stage where we recognised everybody as the same as that spirit, then I think we would all be living very different lives. We would be, -because it also expects us to live at the highest possible level as a human being as possible, and if we, -it kind of means to me that we're not living, most of us. Some people do in spite of not knowing about their spirituality, they're, they're living at the best possible level that they can. But each one of us can reach higher and higher in our living really, in the way we think.

Some who did not think religion or spirituality was relevant to their role as a carer practised religion for other reasons. For one carer, who is from Japan, praying is part of her culture but she didn't really think about the spiritual side of it. To help her cope she preferred relationships to 'real people' rather than to God. There are also carers who had never been religious or spiritual. People who did not rely on spirituality felt that coping is ultimately down to people's own personal resources, including their life philosophy or beliefs.

He believes that while you may get support from religion, it is really your inner strength that...

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He believes that while you may get support from religion, it is really your inner strength that...

Age at interview: 62
Sex: Male
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You have had the strength to cope with this and able to do the work that is required of you, is it from religion or yourself? From what you have said it seems to come from yourself?

It has come from myself.

Often, people say it has come from religion?

You can get it from religion if someone believes, you can get it from there as well. But look, what I have inside, is that if you are going to do good, then do it, but do not do bad. That is my principle. With that I carry on. If you cannot do it, then move out of the way. If you do not get on with someone, cross over the road but do not do bad things. It's as simple as that. Why do bad things? You are a human being and god has given you life, no need to. You get two chapattis [idiom meaning be satisfied with you have got] why lie, do we want to become millionaire? What is the necessity of all that in life?]

What you have told me, your story, it's a type of philosophy, has it come from your culture or from your own family? Or elsewhere?

No, not from culture, but I often watch some documentaries, you know, Gujarati ones that come. Or those religious talks that come such as Morari Bapu [Indian Guru] or the one in Australia, the one who died recently. Her teachings comes on at 5 o'clock. When you listen to it, in reality, you really can get something from it, if you look at it from your heart in the right way and you use it for good effect, get happiness and peace. You can learn a lot from it. If you can learn from it and apply it to your life. We do not want to become a very 'learned' person, but from our perspective, it's about how we can get peace and happiness, that's what we should look for. It's not about preaching to other people but preaching to ourselves. It's about applying it for ourselves. So why not?

The support people gained from religious communities varied. Some people felt that their religious community supported them. They got a lot from worshipping and socialising with like-minded others, talking to religious authorities, and even just being in places of worship. However, some chose not to talk about mental health issues in their place of worship out of fear of negative comments. A couple of people had changed religions - or even turned their back on their religion - because of unhelpful ideas such as the negative views about mental health problems in their religious community (see 'Negative attitudes to mental health problems'). Some people wished their religious communities were more accepting of mental health problems.

Amar has stopped going to a Temple because of people's attitudes to mental health problems.

Amar has stopped going to a Temple because of people's attitudes to mental health problems.

Age at interview: 51
Sex: Female
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Sikhism, in relation to other religions I am told, and it's written, it is a religion of equality. When it comes to mental health it is religion of discrimination, of inequality is my experience, might be different from others, but me and my family it is that. Still when we go to the temples you know -my mother is very religious, she's been brought up in a religious school education, all that and she's very religious- she has stopped going to the Temple, because people's negative attitudes, remarks, general bad treatment and I'm not going there anyway, no more, because I can't stand it.

Would you have gone if it hadn't been for that treatment?

I would have gone and followed my religion, but I'm not sadly.

Do you feel that the reaction within the community to your mother's illness has impacted on your religious path?

I get a better experience in my roles that I play at work, I have link to churches, I have link to different denomination, different religions, but my religion, my temples don't make me feel good. I feel better going to church, I have a better respect and treatment than I would going to one of mine. Sad to say that and I suppose I was na've to think all religious places should treat people well. But then again people are people, you can't change attitudes that easily and our temples are very, what is it, independent. Where the church is controlled from the top down, the temples they have a committee, a local committee and it's usually men, very rarely women, or people of different age, so where is the equality there?

Do you feel it's dominated by older men?

Yeah. Older men and men than women and yet people go on about it' Equality. I don't think so and if a woman was menstruating she can't go and pray behind our bible. I know this happens in other cultures as well, but that's one illustration, the other illustration is who controls it and what services they provide and they raise lots of money for whatever means and not to help the community, not for community support and I have seen nothing for mental health and I've been in a position to develop communities in my role. Obviously this is my experience, but it is more than the average person's, I have more of a birds eye view than the average person, isn't it?

According to Anne, people do not talk about mental health problems in churches.

According to Anne, people do not talk about mental health problems in churches.

Age at interview: 40
Sex: Female
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Well, since I've been involved with the Mind and Soul group, and we visited a Church of England and a Methodist church and that, and we had discussion groups with people there as well, and I think it's the same but slightly different. It may sound silly but, some of them had lost a loved one 30 years ago, that had committed suicide, but they've never talked about it. They've been in the same church for over 30 years but never talked about it because they don't think it's an issue people should talk about. And that's another thing with me and Adam now he's, he is a lot better than he was at the beginning. You know, why not talk about mental illness? It's out there. Hundreds and thousands of people suffer from it. Why has it got this stigma? You know. Why can't you say, 'Oh, hi my name's Adam, I've got mental health issues'. Or, 'My husband's got mental health ', because sometimes I think with my friends as well, well some friends or whatever, they don't like you to talk about it, but it's part of me. It's a part, it's been part of my life, it is part of my life, and you should be allowed to talk about it without people getting scared or thinking, 'Oh, don't want to talk about it'.

Some carers said religious and spiritual beliefs could create concerns and even problems. One person felt conflicted about signing a 'do not resuscitate' order for her aunt because she would have always have felt she had 'killed' her in the eyes of God. Other carers talked about how some people were 'addicted' to religion, or had been misled in their readings of the Bible or the Qur'an. Some thought mental health problems were caused by spirits or spiritual crisis, or made worse by unhelpful beliefs (see 'Carers' views: mental health problems & causes').

Last reviewed September 2018.

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