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Mental health: ethnic minority carers’ experiences

Carers' views: mental health problems & causes

About one in four people in the UK have a mental health problem. People who are affected have difficulties in the way they think, act and feel. Psychiatrists distinguish between different kinds of mental health problems (such as depression, anxiety disorder, schizophrenia, bipolar disorder (manic depression), obsessive compulsive disorder, dementia). However, there is no agreement about exactly what causes mental illness and how people can recover.

How carers describe mental health problems
When the carers we spoke to described mental illness, many talked about how it can affect people's understanding, thinking and logic, and that people who have mental illnesses can sometimes have a 'pretty loose touch with reality'. People also talked about how mental illness can mean people are less aware of their needs and make it difficult for them to cope with everyday life. Some said mental health problems made people 'see dangers that are not there' or sometimes not recognise real risks. Many said that in order to help, carers and professionals need to understand where those with such problems 'are coming from'.

Most thought that mental health problems can affect anyone, 'you don't have to be poor or uneducated, it has no barriers, it can happen in any community, any class'.

Some believed there can be a fine line between mental health problems and 'normality' and that we all at some point in our lives can 'get a touch of mental illness' when we feel stressed, depressed or down and find it hard to cope.

 
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Miriam says services need to understand that mental health problems means different things in...

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Age at interview: 51
Sex: Female
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I just hope that, as I said, the hospital authorities will understand also where people are coming from, their culture, background and why, and what is mental illness for them, because at times when I see people, I ask them that question, what is mental illness for you? Because you have to understand where they are coming from before you'll be able to know why they are behaving the way they are behaving, and I think people at times don't find out a bit more of people's background and who they are and why they are worried or frightened and help in the way that they should. And medication also has so many side effects, people don't want to take medication, do they have alternative help? That also is something that I think'

How do you define mental illness?

How do I define mental illness? In my own words, I would just say it's' -a way of thinking outside your reality, really, and not able to meet your basic requirements at a point that you're in some form of crisis. So if the crisis is sorted and you'll maybe get better and at times you need some medication to help you do that. So it's not the end of the world, you know, I mean it doesn't often kill like so many other physical illnesses kill, but it can make life difficult, so you need to deal with it.

Carers' views about causes of mental health problems
People had different views about whether mental illness is something you are born with or not. Many believed that if there is a genetic side to it, it still needs to be triggered by something happening in the environment such as drugs, stress or loss.

 

Amar thinks more resources are needed to help people avoid getting mental health problems caused...

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Age at interview: 51
Sex: Female
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Just that these days, all over the world, in the western world, we're living longer than before and pace of life is fast with stresses and strains. And we don't always have the strength. When we are strong we can access information, some more easily than others, but we don't always have the strength to listen and look after ourselves and, you know, sooner or later -and it's happening already in health, people are getting conditions they were getting older and now they're getting younger, I mean… Mental health is the same. Children are getting mental health now more and more, we, here in this centre, we see children with all sorts of issues really and mental health is happening earlier and earlier, if…you weren't born with it, but it's quite easy that anybody can get it and yes, there are some resources and services, but very limited, long waiting lists, not easy to access. So there needs to be… Here, at the moment, speaking as a carer and there needs to be more to support, whether it's information or access, or talking to somebody, mainly, yes, information and talking to somebody. Information is good help, but talking is even more important, someone to sit and listen, or help you see things clearly, make you feel worthwhile and maybe assist you to, 'well what about this?' If this happens earlier then there is a less… opportunity for people to end up with mental disability, which is acquired in life later than they would have done.

 
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She thinks a mix of genetic and environmental factors caused the mental health problems her...

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Age at interview: 28
Sex: Female
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Yeah, both my parents were and then they came over and his dad died and he had younger brothers and stuff back home so he was working to support them as well. So from what my mum has said and what my dad has said I think he was just working 24/ 7 and it just got too much and he couldn't cope and that kicked that off and my mum has said that before that, he'd act a bit strange and then with him hitting her and stuff, I don't know what went on around that but it possibly it was his, you know, stuff. With my older brother and sister I think genetics and, and I think environment as well. And I think because of the way they blame my mum, I think they feel it has a lot to do with my mum and I know the term that's used, like schizophrenicgenic mother and I'm not, -at first when I found out I was like, yeah, it has to be that, because I needed to find something for the reason why, then I was like, you know what, you can't put this all on one person. I don't think environment helped and I don't think, I don't think our upbringing helped in the sense of the church that we went to was so different and then you try and assimilate that with being a normal child and trying to fit in with the rest of the family. And the rest of the world and when my sister and my brother started to get ill quite a lot, I feel a lot of it was where they were living as well.

Some carers have never been told about the likely cause of their relative's illness and some had not even been told what the actual illness was. Several of the carers (especially those working in the mental health field themselves) disagreed with the diagnosis given by doctors.

Many carers, and especially those who cared for someone with schizophrenia, had been told that their relative's mental health problem was caused by smoking hash, marijuana or taking other illegal drugs. Some of these carers believed that if their relative 'stayed off the drugs' they would recover or at least be stable on their medication.

One carer had been told by doctors that her husband's depression was caused by a viral infection, which had also left him with fibromyalgia. Others too talked about how mental health problems followed 'a shock to the system', sometimes in conjunction with illnesses such as heart attacks and diabetes.

A number of the carers believed their relative's problems were caused by difficult childhood experiences. Some thought children could get problems when carers themselves 'went through a bad patch' in their marriage or were getting divorced. Others talked about how 'bottling up' or being unable to talk about negative experiences (sometimes because of others' attitudes) could cause mental health problems or make them worse. 

Rather than looking for one cause, most carers believed mental health problems were caused by a mix of things in people's social environments such as dysfunctional families, unhappy marriages, alcoholism, loneliness, isolation, rejection and the lack of support or encouragement in difficult times. People also talked about pressure from work or studies, from living in poverty or the effects of racism. Some said migration can be especially difficult to cope with.

 
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Ramila says her brother was vulnerable and had a hard time adjusting in the UK.

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Age at interview: 56
Sex: Female
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I think after, maybe after all these experiences that he had in his childhood, whether it was beating or being, as a baby not getting the right love and attention when he needed it. He probably was a very vulnerable child and didn't know how to cope with life in different ways, you know. And so I think, well what, -he was OK as far as I know, when we were together as a family up to the age of 16,17 although he might have his weird ways of being, you know, shy and isolated and all that. And not, -he had one or two places where he went, like a corner shop where he had made friends, -but I can't recall him having very many friends maybe, but I was lost in my own world. But then he came abroad, back to England. And I think that was the, -must have been a terrible shock because he came, he was sheltered so much with parents and the family, and then suddenly to come to a life which was completely different. And although my brother was here, another brother, eldest brother, and he was coming to join him, very soon he had to find his own accommodation. And I think it must have been a tremendous shock around 18 or at whatever age he came, to be away from his parents who always kind of mollycoddled him, to a life where he was very foreign, different. It's different language, different culture, different food, not the same faces, no friends. A brother and his sister in law, quite changed because they had been here longer, they would have probably assimilated more in the culture so, thinking changes because I know my thinking has changed so, -and [you know] the life makes it change because you work tremendously hard, nine to five, so you can't stand nonsense really. And this young person coming along and so, maybe wanting care or not, it's little things which we don't know when you come from a foreign land where you're not used to the ways of saying thank you or sorry or knowing the other side of life, of working life and the stresses, and expecting things maybe. Living in bedsits.

 
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Aiko thinks stress at work was the trigger for her husband's mental health problems, but that a...

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Dysfunctional family background, physical and psychological damage in childhood, living environment, lack of support from family and school.

At the beginning I thought Jim was just stressed because of the pressure at work. He didn't have a good employer who was a bully. And Jim was a very determined, also he wasn't giving up to get better salary. Although Jim was working as an IT developer, and he was getting reasonable salary at the time, -very hard, I hardly ever seen him at home. He as always away, almost like living together but I only see him at the weekends for a few hours, if he's at home he was always sleeping. So I thought, try to get the better life created a lot of stress for him and the pressure. I thought that was the reasons for him to have the depression. But when Jim was beginning to tell me history about himself, since he was little, I didn't realise he was actually from dysfunctional family. His mum, -he's got problems with his mum and dad, and the grandparents, and all over family backgrounds, his upbringing, bullied at school, racial issues, harassment, those, -everything I think created a long history of his mental health problems. So when I, -so Jim had the nervous breakdown, that was a very, very superficial things, really tip of iceberg. But actually there was a massive, massive discovery since then. So it wasn't just stress at the work, actually Jim had reasons to feel depressed and traumatised by his experience in the past. But those things aren't talked through by GP or psychiatrist at early stage. Now, just these days it beginning to happen, but especially his psychiatrist was very reluctant to help or treat Jim. So the causes were sort of like, “oh, it's Jim's upbringing”, well so what? Kind of like, “oh, everybody's children in this country can have that kind of a problems, single parent is such a popular issues, nothing unusual, it's common problems so.

Most carers believed the causes of mental health problems are complex and that it was difficult to know exactly what triggered it. 

 

Jane thinks different things in a social environment can trigger mental health problems (played...

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Age at interview: 69
Sex: Female
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Oh- I don't know, I'm just wondering if it caused from a- Because my husband and I were going through a little bad patch at the time, we went through a bad patch and, you know, I don't know, I don't know if it's, if it's triggered from that, or what, I'm not sure. Because you see I get to find out now, because I have given a lot of, I've been to a lot of talks, over the years, me. I've been to a lot of talks and I've been to, to training, even about what schizophrenia is and all those things and even sectioning, all those things, I've been trained over the years, me -and talk as well. So anyway and as I said, I don't know if it's triggered off from that, I don't know, because they said, that -I get to find out that schizophrenia is an illness really, it's an illness, it is an illness. And in my training I've learnt a lot of things, a lot of things that schizophrenia can be, -anything can trigger it off, it can be a chemical reaction in the brain, you see it can be a chemical reaction in the brain. It can trigger off from a social environment, from maybe unhappiness in the home, or home not, you know, stable. It can trigger off from other social environment and the chemical in the brain, unbalanced chemical in the brain, you know, and not in a proper environment, social environment, not treated properly in the environment as well can trigger all those things. Because in my mind I think it's there, that's what I think, I think it's dormant, there. But some people say, it can maybe come from like the generation, from like a, the word to use again?

Genetic?

Yes, but I have nobody in my family as far as I can know, that suffered from any mental illness you see, so these are the different reasons that they have about it.

You said, you think it's dormant, do you think it's in her?

Yeah I think, to me I think it's, I think this illness is there, [indicating her chest] I think so. I think it'd be in people who suffer from like schizophrenia, but it just needs something to trigger it, that's what I think, that is my-.

You're born with it and you need something to trigger it?

That's my thinking, that it must be something in there, because if you have a chemical imbalance in, in your body, something has to cause that chemical imbalance and that's what, you know, I gather from listening to talks and going to these. And then any kind of social environment, unpleasant and a social environment can trigger mental illness, so that's what I think.

Some carers had heard that traumatic births, the time of year people were born, 'schizophrenogenic mothers' or nutrition could cause mental health problems but were not sure if there was any truth in such beliefs.

Mental health and spirituality
Some carers talked about how someone's mental health has to be understood as part of people's whole lives, including their mind, body and soul; 'everything needs to be taken into consideration'. Some talked about how a broken spirit can lead to mental health problems.

 

She believes that negative social pressure directed at Black people can dampen the spirit and...

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Age at interview: 69
Sex: Female
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No, I said, black people in general, we are seen as aggressive all the time and we're not really aggressive, we are people with free spirit, we're a real happy people, but under pressure, under, under social pressure and that so terrible environment, under negativeness we can, -they can become aggressive, because the spirit has dampened, the spirit has become low and sometimes this aggressiveness diagnosed as schizophrenia. That can happen, it can happen. It can happen, you know, because if you are always being victimised and this negativeness against all the time you've been, you know, the social environment is not right, it can kill the spirit you see and this is another thing that they don't, you have to connect the spirit with the physical, because once you damage that physical, that spiritual side of you, the physical side is gone. Because the spiritual side works with the physical side of you and this is what they must, the doctors they must look into again, the spiritual. Don't look at the physical side of the person, the person's spirit has gone low, it's dampened, it's weakened and so if your spirit is weak you become aggressive, you become mental, you become everything, because everything around you is just not balanced, imbalanced, you know. So they must look into this thing, don't look at the physical side of the person, the spiritual side has been damaged.

Some carers explained mental health problems by religious beliefs. Some said their relative had become unwell after dramatic events which were 'written that way' by Allah. Others saw mental health problems as a result of 'spiritual attacks' by negative forces, while others said it was caused by things like drugs, but that the reason people got addicted to drugs could be explained spiritually. (also see 'Support from Spirituality and Religion')

 

Her brother got mental illness from smoking marijuana, but she thinks his addiction was caused by...

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Age at interview: 42
Sex: Female
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But before that, '79 -I'm talking about my brother has already started his problem, you know, it has to do with peer groups. He started by smoking marijuana as early back as -'79 was really smoking marijuana. So that was where he got the problem, that was where the problem started, so he started with marijuana. So -you know in Africa you must have a loophole before they enter through you, so the open, everything was, you know, true, everybody was -my brother's marijuana, -his mental sickness was because of marijuana. Why did we not take him to, -went to the highest rehabilitation home, went to hospitals, at times they would do, discharge him when he's three months at times a year, at times it was just to keep his sanity. So it was caused by marijuana initially so then he was in class four in the secondary school, far away. He is senior to me, I'm 42 now, he's 46, four years senior to me. So the first, first one was not just, -it was like a blow, you know. Before he do, -he abusing that he's not ashamed of himself, you look at him just smoking marijuana around the streets or whatever, 'look at what you are causing to my mother'. My mother became hypertensive because of my brother, all of us we're now ashamed, for somebody that's so intelligent to start behaving like that. 

Mental illness in my country they always caused by one thing or the other, either drugs or the one that is caused naturally or the one that, that people caused, you understand, there are one that people caused, some other people cause it, you understand.

Each other?

Yes.

How?

By fetishness, they are doing the unnatural, they are doing that being caused by people, there are the one that, that are just, they are just mentally unbalanced.

Do you think your brother's was caused by other ways?

Of course yes, that one was very, very obvious, there were forces behind that one, they are so obvious.

Do you think you know who?

Of course yes, I know, -I know and everybody knew in our family. Everybody knew.

How was that to, -how did that feel to know who did it and then to suffer so much like you did?

It caused a trade of segregation in the family because we knew. We knew, we knew where the [mental health] were coming from, so we knew. So that kind of it which caused jealousy and hatred. Till tomorrow we know the person.

 
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Rani says we can't know who will fall ill, it is up to Allah and we should not worry about it.

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Age at interview: 62
Sex: Female
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I felt pain before now it happens more often. I'm always thinking about him because he was so healthy and worked before, he worked regularly, he used to pray five times a day now it's a tension, isn't it? You can also see that he is a good person but how could we know that he was sick on the inside? Who knows?

That is Allah's order that he is sick, what can I do? Most people are sick. No, I don't worry, I don't worry because that's Allah's will. Sometimes you can see the one healthy person is chatting or watching TV then he has a heart attack, so? I never hide that he is sick, I also have lots of problems, people ask me what about you? Then I tell them I'm fine, I'm very well, it's Allah's will that I am fine, some people are handicapped, they have no hands, legs, eyes. They have lots of problems. I am better than them and I like to thank Allah for that. Everybody says that I have this problem, that problem, I don't care about that, I don't concern myself.


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Last reviewed September 2018.

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