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Mental health: ethnic minority experiences

The role of family, friends & carers

Support from family, friends and carers
Not everyone had supportive family or friends they could rely on. Many people, however, described the importance of receiving support from family, friends and carers and said that they would struggle without it: “because I've got a good family it helps a great deal”. They talked about the need for people with mental health problems and professionals to be open with families and to involve them in care (see 'Messages for professionals about mental health'). As one man said, it's important to recognise that they are trying to help (see 'Messages for others about mental health'). 

 

He says his wife helps with practical things and that trying to manage without her would be a ...

He says his wife helps with practical things and that trying to manage without her would be a ...

Age at interview: 37
Sex: Male
Age at diagnosis: 37
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On a day-to-day basis she does cooking I used to cook a lot, I don't so much now, especially since I got diabetes. My food used to be very heavy on oils and fats and meat and, and salts and sugars and all kinds of bad stuff. So my wife looks after the diet side of things. I do things like run the rubbish out, tidy up, things like that from time to time. [Emotional support and understanding, keep an eye on me and my medication, go out with me for reassurance.]*

Although my wife laughing in the background does most of the hard work, I have to admit. On a, on a dealing with other people basis, she takes the phone calls and the mail. Dealing with the bureaucracy, that's her job as well. And I've got to say my wife's a very resilient character and if somebody messes us around like down at the Council, she's very much of the pit bull variety, she'll, she'll lock her teeth in there and she'll just start sending one letter after another. And I can't, won't and can't anyway, name the list of people she's got into trouble down there, through their sheer incompetence. And she's highlighted their stupidity, which is great. If you can, if you have got a family member, maybe not a wife but brother, sister, mother or father, that can help you, it's a big help although I do realise there's a lot of people who aren't in the same privileged position I am, that are actually single and having to deal with these problems on their own which can be a real nightmare.

*Additional text inserted by the participant

One young man was pleased to have been able to stay at home with his family, rather than be admitted to hospital, because he felt that his family cared about him, whereas hospital staff might not.

 

He says that being cared for at home by your family is best for young people, although he says...

He says that being cared for at home by your family is best for young people, although he says...

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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To be honest my family were able to deal with me, even at my worst times, , you know, when they were able to restrain me when I got worse but they didn't put much strength as a doctor, as I don't know someone who is, you know, who works in the public service, someone like a police officer when they detain someone and try to restrain them, they put a lot of power down. My parents tended to just hold onto my hands but not put too much pressure on them because every time they did I became more angry so they tended, they knew what, how to restrain me and they made sure that they didn't worsen my condition when they restrained me. But in hospital they restrain you, they don't care how you feel, if your condition is worse they'll hold you down , even if it's painful you can't shout and scream and stuff. So I think that being around my parents and my family has really benefited me and I think that most young people should be treated at home and that's sort of a widespread view that most people hold, most psychiatrists would hold and most professionals would hold. And even like if you go to any hospital, not even a mental health hospital, any hospital if you ask the doctor or the nurse where should a child be, should they be treated on a ward as in should they recover on a ward or should they recover at home. All of them will say they shouldn't be in hospital they should be at home because, and that's why in most hospitals you see that they try to release children as quickly as possibly back to their families because they want the children to be at home around their loved ones, they want them to go back to school as well because they know at that stage it's a very pivotal time for that child, they need to be in school and, you know, they're going through that stage where they're doing their GCSEs and it's quite a difficult time for them anyway.

Some people had a particular family member who was their carer, either a brother/sister or husband/wife or in a few cases, a son or daughter. Others talked about people who gave them support but did not call them carers, including parents, siblings, spouses, in-laws, friends and children.

Some described family, friends and carers providing support and care when they were unwell. This often included practical help with day-to-day living - anything from shopping, cooking and opening the post to personal care. Some also helped with childcare. Even children took on some of these daily tasks when their parent was unwell, including one 12-year-old who “would cook and feed the siblings, feed her father, and give me a shower in the evening”.

 

She describes how her brother looked after her when she was unwell and asks other families to...

She describes how her brother looked after her when she was unwell and asks other families to...

Age at interview: 60
Sex: Female
Age at diagnosis: 40
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Here, I would like to say something for the service users' family and friends. I have a wish. I have been ill for a very long time and the support I received were from my family in Hong Kong. My brother and sister in law supported me psychologically and materially, and for that I am very thankful. They did not treat me like a person with a mental illness. They willfully brought me to surgical clinics and welcomed me stay with them. When I felt particularly sensitive to sound and had to switch the TV off, my family did not mind and would ask their children to turn off the TV and cooperate. My brother would shop and cook for me after he finished work when I couldn't do so. I wish that the service user's family would support them morally and give them encouragement. As you do not suffer from a mental illness, it is very difficult to empathize, but you must realize, they do not want to be the way they are. As a family, your support and encouragement can embolden them, make them feel less alone, and perhaps help them recover.

 

Describes how her daughter's role as her carer began when she was 11 and has changed over the years.

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Describes how her daughter's role as her carer began when she was 11 and has changed over the years.

Age at interview: 42
Sex: Female
Age at diagnosis: 34
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And you've mentioned a couple of times about your daughter and the support she gives you. And, and actually you said that, you described her as your carer?

Yes

When you talk about her as your carer, what, what does that mean?

When, do I call her my carer now? I suppose in a sort, in a sense. But when she was younger, she came back to be with me after I came back out of hospital when she was 11. And at 11 she would get me in the bath and get me clean and make sure I didn't cut myself with anything. Or, she'd make dinner, she'd do the laundry, she'd do shopping, everything. She would care for me. And when I had the screaming banshees at night she'd hug me and tell me, 'It's going to be all right, mum, it's going to be all right. There's nothing there, there's nothing there, there's no one there. It's just me and you.' And give me hugs and kisses and tell me she loves me. That was all her at 11. And now she's 18, actually not much has changed. [Laughs] Not that much has changed. She's pretty much still the same, but she doesn't have to do like the hands-on care. It's more about if I've come in and I'm feeling quite stressed because of the day or, or something, she will sit with me. She will, she will recognise before anybody else if I'm wobbling. And she will stop whatever she's doing to make sure that I get over it and that I'm not having to face whatever I, I'm distressed about. She will try and put herself in-between me and whatever it is until I've had time to work it out. And, actually her favourite saying, 'Mum, work it out. You always work it out. Give yourself time to work it out.' And, you know, she always says that to me now. And that's how she still cares for me. 

She's, it's the best thing I ever did in my life. In all of my life, it is the best thing that I ever did. Even though when she was born I was absolutely petrified and I didn't have a clue how I was going to bring her up to be a normal decent human being. Because I already knew that I weren't normal. So I didn't know how I was going to do it. And despite me she's a well-adjusted young person, you know, she's at college, she's level-headed. I've never had to deal with any of these crazy teenage behaviours. It doesn't even compute.

One woman had experienced some difficulties with her family in the past so her friends were her main source of support, helping her to get through periods of psychosis. 

 

Dolly's friends with experience of mental health problems help her to challenge feelings of...

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Dolly's friends with experience of mental health problems help her to challenge feelings of...

Age at interview: 36
Sex: Female
Age at diagnosis: 21
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Well I have to say it is the support of a couple of, you know, really good friends, who have also been through the system. So they understand what you are going through actually. You know, your brothers and sisters love, I know they love me, but they, you know, to say, 'Oh try and drop your paranoia, Dolly,' you know, is impossible, you know. If you have friends who have also been through the same experience, they know what you mean, and they can kind of challenge you, that you know, and you know that because they've been there, that they are not talking without knowing what they are talking about really. So, so I've when I've been quite psychotic I have had to have some friends be with me, just kind of saying, 'I really love you. Do you trust me, do you trust me Dolly?' And then, 'If you trust me, what I am saying is that this is not really happening. It is you just being unwell.' And that's how it's kind of, you know, that's why I haven't been in hospital that often, is because I have had really good support from a few friends.

So does that mean that it doesn't escalate or it means that you, do you see what I mean?

Yes. No, because they can see that what is happening, and they know what could happen. They know, they kind of understand how to put the kind of road blocks before the kind of psychosis, you know. And, you know, just being hugged for like an hour's really powerful, you know, by your friend. And you feel that love and it's hard to be paranoid with them, you know. So it makes you question your paranoia, you know. You know, maybe I'm mistaken in what I'm thinking, you know.

Carers and others were also there to listen and give advice, and sometimes acted as a distraction from feelings of depression, worry and anger. One woman said her husband “cheers me up when I'm down in the mouth”. 

Many people described how family members and spouses got involved in some way with their mental health care, including attending meetings. In some cases, this involvement enabled them to access care. One man said he gained access to support from mental health organisations through his wife. Others relied on someone to translate for them so that they could access mental health services. One woman felt that “the fact that [my husband] was White English made a difference to the treatment that I received”.

 

The presence of her white English husband meant staff treated her better.

The presence of her white English husband meant staff treated her better.

Age at interview: 56
Sex: Female
Age at diagnosis: 48
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When I look back I feel grateful for my husband to be there because I know and I've heard of other people who have been seen by these teams have been treated badly, ignored, horribly. But I think that, because there is racism, well it's everywhere, but the fact that my husband is white and blue eyes and tall, and strong man, well-spoken, well-educated, by me, being by me he gave a different impression, they listened to me. He also was with me in appointments and so to me the fact that he was white, English, made a difference to the treatment that I received because then when I was on my own then I knew what abuse was [Cries]. That is hard. Why do I have to have someone by my side to be respected? Ignored and humiliated, that's what I…

 

She says it's difficult to communicate with her GP without her children to interpret for her. ...

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She says it's difficult to communicate with her GP without her children to interpret for her. ...

Age at interview: 48
Sex: Female
Age at diagnosis: 46
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Before when I went to see the doctor, communication is not easy. When I make appointment, I was told that I need to bring someone along then they could help me. I told them that my children are busy and I have to come alone. Then I could not make appointment. Sometimes the people there would be very unhappy about it [chuckle]. They are very unhappy. Later I went to, in the past I lived in [area], then I moved [further north]. Those Indians, later, understand me better. They would let me see the doctor. Sometimes if I go alone they would let me see the doctor. Later they have Chinese to help them, which is much better. They would then let us see the doctor. But still whenever I go to see the doctor he would said' 'you are not ill actually' [chuckle]. I said' 'I feel painful here.', then he would said' 'that is due to stress, you need to relax.' Just like that. Then my daughter said' 'Mummy, the doctor said you are not ill.' Then I just ignore it for some times, until I moved here and met the GP here. When I changed to this GP the receptionist is just awful.

Family members often got involved in care by, for example:

  • Spotting early symptoms when someone was becoming ill again
  • Helping to follow instructions from doctors by ensuring medication was taken and monitoring behaviour
  • Restraining relatives when they became unwell
  • Making contact with doctors
  • Being involved in sectioning a relative

One woman who'd had difficulties with her family said, “My dad wanted me put in a residential care home because I couldn't look after myself”. Another man had to get his wife's permission before he was allowed to view his medical records (see 'Getting information'). 

 

She says her brother helps with shopping and cleaning, and makes sure she goes to see her...

She says her brother helps with shopping and cleaning, and makes sure she goes to see her...

Age at interview: 38
Sex: Female
Age at diagnosis: 31
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Okay and then the other thing that I was wondering about was if you have anyone who you would describe as a carer?

Yeah my brother.

Okay and does he do, I mean what sort of things does he do?

He'll go shopping for me and all that, he does me shopping and goes to the post office for me, when I'm not well enough to go the bank and that he'll go and get me money for me.

Okay, does he do anything else?

He'll clean up me house and that, he's really good. He works full time but he still helps, he's always there. And the kids, his eldest son is really good, he's thirteen but he's like a twenty year old in the head.

Okay and does, I mean does he come with you like if you have to go and see the sort of doctor or psychiatrist?

Psychiatrist yeah.

And what happens then, what's his role when you go?

He just makes sure I get there, he sits in the waiting room and waits for me to come out, he just sits there so he'll make sure I get there and that I don't run off and tell him I've been when I haven't [laughs].

Have there been times, for example when you were sectioned, did he have a relationship then with the psychiatrist?

Yeah, he actually sectioned me once, he actually signed the section forms. Because I was so unwell (on the road) and he said that I needed that so he sectioned me with the doctors.

Right and how, did that affect your relationship at all?

It didn't, because I didn't know till afterwards and when he told me he said, 'I done it for you, because I was caring about you.' And I said, 'I know you did.'

Several people talked about protecting each other from getting upset or worried. One man was the eldest son in his family and was the head of the family so it was his responsibility to advise them when they had problems but he found this stressful. He said his family and friends tried to protect him from bad news or anything that might worry him and trigger his depression. Other people said they tried to protect their carers when they felt they were becoming unwell, sometimes not telling them how they felt. One woman said she didn't tell her sister-in-law about her severe depression because she didn't want her in-laws to find out, “maybe she will tell around, which I don't want”.

 

Marlene feels the only person she can talk to is her sister [see Interview 22]; she says she...

Marlene feels the only person she can talk to is her sister [see Interview 22]; she says she...

Age at interview: 38
Sex: Female
Age at diagnosis: 24
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Every time I say to somebody, they say, 'It's in your, it's in your brain.'

Your'?

They, every time I say to them, 'I feel tired like' they say, 'Oh, it's all in your, all in your brain.'

Oh, I see. So who says, who says that to you?

My mum and my dad, and my, and my sister sometimes.

And how does that make you feel, when they say that?

Feel bad.

In what way?

Feel like, like I'm bad, like I'm hopeless. Why, why I should be tired? I'm not a lazy person. I wasn't, never been lazy person. I used to be light on my, on my feet. But now it's my eldest daughter, she does things for me, cooking and everything. And she does a lot. When she was at college I do it but I've never been like that. But now I get tired. I do little things, I get tired.

Is it difficult making people understand?

Yes, it's very difficult.

How do you explain to them then, how you feel?

I never talk to them. I only talk to my sister. She understands me. But I never talk to my mum and dad about this, I have this problem. I think that they're going to be worried, because my sister, she's having a very hard life anyway. And they know I'm, I'm strong and I'm, and my life's going like it is really. And I think that my parents don't worry about me. I never tell them. I just always hide it.

One man involved his wife in his appointments with his psychiatrist from the very start of their relationship so that she would always feel comfortable. 

 

He says he was open with his wife from the start of their relationship; he told his psychiatrist...

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He says he was open with his wife from the start of their relationship; he told his psychiatrist...

Age at interview: 50
Sex: Male
Age at diagnosis: 20
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I have thanking my wife many times for being so understanding towards my illness because many people, many girls really when they heard about mental illness they run a mile, to know that I have a mental ill. The wife was aware I had a mental illness, other girls were aware but they just thought no he's a nice guy I suppose, but could not take the change to go out with who had be crazy/mad. My wife, Thank God, took the risk not deterred by the gossip. I tried to make sure she would not be afraid of me, you know, so I talk to her about my regular dose of injection medication, we were just going out and how glad I am that she accepted my heart. Even at the going out stage I told her about I'd got to see a psychiatrist and she attended psychiatrist appointment with me. So I think I wanted to make her feel comfortable'

She coped with trying to understand how it affected me because, basically I got her involved from the start and if she had any concerns about me she could have ring the GP, she could have gone to the psychiatrists and asked for advice. I said to the psychiatrist if my wife ever has any concerns about me, come out immediately and that was one of the clauses put in the care plan that if she called the GP they come almost immediately.

The effects on carers and relationships
The caring relationship affects the carer, the person being cared for and their relationship (see the Mental health: ethnic minorities carers' experiences). People used words like “horrendous”, “frustration”, “suffer”, “blame themselves”, and “depressed” to describe what they thought their carers and family experienced. One woman said her 13-year-old daughter wanted to “help other people” with mental health problems. Another felt her children's education suffered.

A few people felt it would be difficult to have a partner when you have mental health problems, or felt that their relationships had suffered. Others, however, described having a good relationship with their spouse, including one man who said, “Amazingly, my wife stayed with me” through his periods of psychosis. Some people described their fear of being left alone and becoming reliant on their carer, comparing themselves to a child following a parent. One man, a former mechanical engineer who used to supervise others, found this very difficult, “you start feeling like a baby”. Another man talked about his fear of hurting the family (See Lorenz's story).

 

He describes the effects on himself, his wife, and their relationship. (Audio in Punjabi, text in...

He describes the effects on himself, his wife, and their relationship. (Audio in Punjabi, text in...

Age at interview: 55
Sex: Male
Age at diagnosis: 54
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I feel depressed when I was working in that department, there were 14 people whom I look after. I was… for 15 years and after redundancies people were decreasing and in the end I was left with four people. I organise their work and for other departments there was a layout to get material to do this to do that. But for me I had just map and organise everything. I was that much more able at that time but now I even have to get my medication from others, you start feeling like a baby, then I can't stay alone in the house if I know there is someone else at home, if the wife is at home I want to be where she is at home to talk to her, but she wants to do her own work and if she goes upstairs and I go after her she says can't you sit on your own, she says you are following her like a child.

So why don't you want to sit alone?

Alone, as sometimes if I remember something I want to talk about it. It feels as if I talk about it it's been forgotten or there is something wrong in the house, we have to go somewhere, we have got to get something, to make something, forgot something, whatever it may be then I want to discuss it with her but she wants to be left alone as she wants to do her own things.

How does it make you feel when your wife says this?

She says it strongly then I feel myself that she is taking the depression tablets and she is taking all our load, so even if she says something it doesn't matter, but in real life she has never spoken loudly, in front of people or in front of children she has always respected me. But, you know, everyone has their own thinking and if you disturb them they jump. Then I didn't realise I would hide away and cry and feel that she has disrespected me, but I slowly found out that she is taking medication and her complications are, if I need rest then so does she. I now do as much as I can for her, even if she speaks loudly I say I didn't hear her, we manage this way. This is the way we understand each other, the way of running the house, running children, no-one likes it … 

You both make allowances and understand each other?

Yes, yes, if we don't understand then we will both be upset and then there is no-one around to compromise us as our children maybe out and it's sometimes better to ignore each other.

The mothers who described their children caring for them expressed guilt about their helplessness and reliance on their children for care. 

Having no support
A few people we talked to said that they got no support at all from anyone. Some didn't want to ask their friends or family for help, including one woman who said she didn't “cling on to” her family. Many of the people we interviewed had experienced difficulties with their families and this often meant that they received no support from them, though some got support from other sources. Migration often led to separation from immediate and extended families, and this could lead to additional isolation. One woman felt her family were “fed up” with her and another felt she had less support living in the UK than she would have had near her own family in Pakistan. Others described feeling that they had not been able to regain their relationship with their parents after being separated from them in childhood (see 'Views about causesm of mental health problems: social & environmental factors'). Showing understanding was important to many, and those who didn't get support from family and friends often put this down to their lack of understanding and sympathy. Some people described the lack of support they received from relatives and 'fair-weather' friends. This absence of support led one man to attempt suicide.

 

He says people don't understand depression and he didn't get the support he needed from family,...

He says people don't understand depression and he didn't get the support he needed from family,...

Age at interview: 64
Sex: Male
Age at diagnosis: 45
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Ah yes. It's not just the family. You see when I got this illness I couldn't fend for myself, and then obviously it turned my siblings, and didn't understand however much I may tell them, and sometimes get annoyed, some days they would say, 'Well how do you feel?' You know, I would tell them. 

Then as I take an active part in the church, I went to one of the higher ups in the church, I said, 'Look my situation is very precarious. Although I'm not that old, can you give me a bed in the home for the aged? Then when I've got the depression I can lie there, I'll get a plate of food, then when I'm back to normal I could help you in the accounts.' Even the church turned me down. 'Sorry can't help you.' So when I thought I couldn't fend for myself, my family couldn't help, even when I had some good friends, I thought that they might lend a hand, you know, and then the church said they can't and I thought, 'Look what is this?' So that is the thing which prompted me to do suicide. Commit suicide. Now if somebody would have a lent a hand, a lot of caring then I may not have. But I think this is why a lot of people even ask for euthanasia, because they feel there's nobody, they might as well go. Yes.

So what do you think, your family's understanding of your depression is?

Well they said, I must pull myself together. Yes, that is it, you know, that's all, that's all, pull yourself together. You know, they all had depression it seems, you know, this is it, you know, and they always tell me, 'Oh I had depression, this, that and the other.' You see. However much I may tell them, even I, once we had a meeting at one of the health centres and I took them all, and explained to them, even the psychiatrist explained to them, but it didn't go through their head. 

Why do you think that is?

Well I think people have got this sort of notion isn't it. I think in future if someone was diagnosed with a depression you see, they must say [Anton's] disease. Then it will give a proper name. And they'll say, 'Oh no you haven't got depression you have got [Anton's] disease,' and then people will know what it is. Yes. Well I tell you this, you go and speak to people, you just go and tell your friends, 'Look I am depressed a bit.' You will see. You'll be amazed. And the advice you will get, and you will find so many of them have had.

 

She received no help from her relatives when she needed them and there was no-one to look after...

She received no help from her relatives when she needed them and there was no-one to look after...

Age at interview: 42
Sex: Female
Age at diagnosis: 32
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So auntie, were there no other relatives at the time?

My, was I had everybody here really but what I have to say is when you are ill then no-one wants to know you, understand? In our society, no-one is there for you if are ill. And the English are like, when you are OK, they don't bother but if you are ill then they help. They give you respect.

Have you got no-one in this country?

I have got everybody here, but I did not get anyone when I needed them…

Are you on good terms with your relatives?

No, I do not want to mix with the relatives. I want to be on my own. When I needed them nobody was around. Everybody is good weather friend. If I invite you all now, if I arrange something gorgeous in a park and build a stage and arrange for cakes etc you would come well dressed and even bring a gift. If I have to do this for the relatives as well, then it's better if I do it with whoever, I didn't get them when I needed them. When I was ill, my children suffered as if they had no mother. Nobody helped us then. Nobody would comb my kids' hair or give them a glass of water. So now I can't be bothered to treat them. I did a lot for them and they abandoned me. I don't want to give them the same chance again. One has to get stronger through suffering. One can not go out without getting strong. Who made me strong? The two psychology nurses that came, they used to give me courage. If I was sitting down, they would say, ”Why are you sitting down? Let's go for a walk.” If I said I couldn't, they would say, “We are with you, you can do it.” Or if I said I couldn't go somewhere because I didn't know English, they would say, “Why not? We are with you.” One of them was Bengali and the other was English. They would say, “Whatever you are stuck with, we are here to help you.” It was all right in the olden days. If you were nice to others, they would reciprocate. Now you can be nice but get nothing in return.

Being a carer
Many of the people we interviewed also had caring responsibilities - some had children living with them, while others had a family member or spouse with mental health problems. Find out more about Ethnic minority carers' experiences of mental health. Anton was also interviewed about his experiences as a carer. For some, these caring responsibilities gave them a reason to live, “the way I dealt with that fear of harming myself was I put all, my younger daughter, she was only eight, her photos up in front of my bed and I kept saying to myself I am responsible for this child, I can't do that”.

Last reviewed September 2018.

Last updated February 2013.

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