Mental health: ethnic minority experiences
Ways of describing mental health problems
Here, people talk about their symptoms and how they described them to others, including friends, family and health professionals. Many people said that they found it difficult to make other people understand what they were going through or why they acted the way they did, including family, friends and health professionals. In some cases, people said it was particularly difficult to explain the symptoms associated with their condition, for example, people with general anxiety disorders and panic attacks. Another man, diagnosed with paranoid schizophrenia, said that his hallucinations were “difficult to put into words”. Sometimes explaining symptoms was more difficult for people who spoke English as a second language, even if they spoke it fluently.
Patricia found it difficult to describe panic attacks in her own language and says if you can’t speak English it’s more difficult to explain mental health problems than a broken leg.
Patricia found it difficult to describe panic attacks in her own language and says if you can’t speak English it’s more difficult to explain mental health problems than a broken leg.
And has that made a big difference, being able to speak English so well?
Definitely. Because as I say, for instance, with panic attacks, I can't describe them very well, even in my own mother tongue let alone in English. If you don't, if you can't speak English then how can you be assisted? You can't, because you can't, you can't point saying, 'This is my problem.' You can go to the hospital with a broken leg, back to the broken leg, and say, 'This is my problem'. And they will fix it for you. But not with a, with something that is in your mind, definitely no. It's concealed.
Describing symptoms to health professionals
Some people we talked to described different symptoms or only some of their symptoms to their doctor. This was sometimes because they were afraid of being sectioned under the Mental Health Act, including one man who told the doctor that “he was going through hell” but didn't reveal that he felt suicidal and who, on another occasion following a suicide attempt, told hospital doctors that he took the tablets by accident. Another woman didn't want to tell anyone she heard voices, so she said her “head was noisy” and that she found it difficult to ”filter out conversations”. One woman with an eating disorder said she didn't want anyone to find out about it in case she was forced to have treatment. Others described different symptoms because they found it so difficult to explain how they felt. One man who was experiencing constant anxiety was also experiencing headaches and stomach aches, had no appetite, had problems sleeping and was worried about school and his exams and he found these physical symptoms easier to describe to his doctor.
He couldn't describe his anxiety to the doctor and was worried about being given the wrong...
He couldn't describe his anxiety to the doctor and was worried about being given the wrong...
And then, you know, he'd just take that as being general, I was worried about exams. And because I didn't, you know, I didn't have the speaking skills as I do now, I wouldn't be able to just, you know, I might say a few words to him but I wouldn't know how to describe it at all. And then you just get, you know, sort of normal tablets or whatever and, you know, I didn't even know how to, well, I was worried as well in a way that the anxiety was masking everything because I was like, and even if I did describe something to him or if I thought I could describe it, I'd be worried that he might misinterpret or misunderstand it and give me sort of medication, you know, wrong medication or whatever or, you know, send me to a mental hospital or whatever. You know, I was like worried about all these things. And I didn't know really how, and because of it happening when I was really young or, you know, the I mean, I see my nephew now is 10 years old and he's really talkative and whatever and, you know, he can describe so many different things, I thought I couldn't speak out when I was 10.
I mean, even in Pakistan I couldn't describe things to people because my learning was, or my development was sort of hindered in a way with the, you know, like this sort of speaking ability and whatever or describing things was hindered by the anxiety. Or, you know, just like being alone for so many, not really speaking to people. So I, you know, I see other people now and, you know, I think, you know, I was never, never like that. So even when I was like, you know, going to the doctor at 15 my ability to describe things was really, really bad. And he wouldn't, you know, spend enough time with me to ask me the right questions in a way. Because I was, you know, always not sure how to describe it, or what shall I describe, and, you know, the physical things I could describe to him and I did. Anything else I was, you know, not sure and, you know, really not. But I mean he knew that it was, wasn't a physical thing because he sent me for tests, you know, to do all my blood tests and everything else like that. But he wouldn't give you the time really and before I'd, you know, described things he'd be writing a prescription already.
In some cases, people didn't really understand themselves what was happening or didn't realise how ill they were (see 'Onset of mental health problems'). As a result, doctors didn't always immediately recognise that they were experiencing mental health problems. One man, who did realise he was experiencing mental health problems, described his symptoms as being like the 'flu', and his doctor didn't realise at first that he was going through depression. Others were also diagnosed with other conditions or took a while to be diagnosed at all (see 'Getting a diagnosis').
One woman, in a state of desperation, exaggerated her symptoms in order to get help or access treatment: she told her doctor she would commit suicide if she didn't admit her to hospital.
She wanted "proper help" from her GP so she told her if they didn't admit her to hospital she would commit suicide or "run away from home". (Audio in Bengali, text in English).
She wanted "proper help" from her GP so she told her if they didn't admit her to hospital she would commit suicide or "run away from home". (Audio in Bengali, text in English).
Sometimes I was better sometimes I was worse. It was going on like that. She was about one and a half and I wasn't feeling well; sort of fed up. I felt that I was a living dead. My children were looking after me, I could not do anything for them, they would do the cooking. So I felt what's the point being a mother like this? Sometimes I used to feel like just walking out. It was like that, so one day I went to the GP. I thought I would have to use some tricks. If I didn't then she wouldn't send me to the proper hospital. If I went to the proper hospital then they would give me proper help. So I told the GP see, I have told you about all my problems; I want to tell you more; and if you don't send me to hospital today then I will either walk into the path of a vehicle or take an overdose and kill myself. She asked me whether I really meant it. She used to trust me, I said I was really fed up that day. I was feeling really bad that I wasn't able to do anything for the kids so she tried to arrange for a hospital straightaway but no hospital accepted me. They said she doesn't really have any serious problem; she wouldn't do anything; she is just depressed. We don't have any beds. They looked for a bed at the mental hospital and didn't find any at… The GP insisted that somehow they would have to accommodate her today, if you don't and anything happens then you would be responsible for that. In the end they made arrangements for me a private hospital at [nearby area] at midnight. I didn't want to go back home that day. If I go home then people say things and I can't stand that. So I said either you admit me at the hospital or I will just run away from home. So the GP put pressure on them saying if you don't take her in today and anything goes wrong, you would be responsible. So they took me to the private hospital and got me checked.
Terms used to describe mental health problems
People from different ethnic backgrounds, cultures and whose first language was not English used standard English terms and labels to describe their mental health problems, including 'hearing voices' and feeling 'down' or depressed. Others used phrases such as, “my head is not well”, “my mind is playing tricks”, or referred to psychological distress or emotional problems. Many said they had experienced a breakdown or a nervous breakdown. One woman said that mental health problems were referred to as “the nerves” in the Caribbean.
It was also common for people to use terms such as “crazy”, “mad” and “bizarre” when referring to themselves and their and others' behaviour. One man, who worked on an anti-stigma project thought it was important to challenge people's use of terms such as “crazy”, “bonkers” and “loony”.
Making a distinction between feeling "normal" and feeling unwell
Many people distinguished their symptoms or the way they were feeling from being or feeling “normal”, saying things like there was “something wrong” with their head or with them. They compared themselves against other people, either favourably or unfavourably. Many described themselves as ill, mentally ill, sick or unwell, and their condition as mental illness or disease. They frequently referred to having a “breakdown”. One man pointed out that what is the “norm” for one person might be different for another. Others described what was happening to them as “natural”, including one woman who thought panic attacks were a “natural response” to anxiety and another woman who, when she first heard voices, thought it was something “natural” that everyone experienced [see Niabingi above] (see 'Onset of mental health problems').
Mental health problems and physical symptoms
Generally, people drew a distinction between physical and mental health and symptoms, using phrases like, “it's just my mind”, “psychological distress” and “mental breakdown”, others found it less easy to tell the difference.
She was worried that her panic attacks were really a sign of a physical, not psychological problem, even when hospital tests were negative.
She was worried that her panic attacks were really a sign of a physical, not psychological problem, even when hospital tests were negative.
Again I tried to conquer these fears and this anxiety until one day I had to go to the hospital emergency. I thought I was going to have a heart attack, again, everything links to the heart. I thought I was going to heart attack. I did a couple of exams which I'd been doing like medical exams which I'd been doing for those, for the past year, for the past two years. Just to make sure that there was nothing wrong with me and that was quite reassuring. But it never really worked because deep down I always thought no I have something, there's something wrong with me, because my heart sometimes jumps. But then I don't think I've ever realised that it was just anxiety really. So from that moment onwards when I went to the hospital and when, when I was actually told you suffer from panic attacks and this is something very common. This is something that more and more people seem to have. I thought that was, that, that, that I would have a lot of benefits from going to the hospital and being told face to face what was, what was, what was, what was the matter. But still again deep down I wasn't absolutely convinced there was something wrong with me. If there was something wrong it wasn't psychological it was something physical. I still, I kept seeing this, this doctor for' quite regularly every' every three months I suppose.
When describing their symptoms or how they felt, people often referred to what might be considered physical experiences. For example, they mentioned shivering, shaking, being hot, cold or feverish, itching, tingling, or feeling numb or weak, feeling pressure or pain and having a headache. A few people also referred to finding it difficult to speak.
She describes a range of symptoms including feeling hot and cold, "something in my mouth like a...
She describes a range of symptoms including feeling hot and cold, "something in my mouth like a...
And sometimes the doctors don't take a lot of notice. They just put everything down to anxiety, panic attacks and this and that. It's like if you get aches and pains, 'Oh, it's, it's anxiety.' If you get a swollen stomach, 'Oh, it's anxiety. You're worrying too much.' You don't have to worry and you still get all these symptoms. Like, you know, when I'm laid down I get really numb. My head goes like it's, it's like I'm not laid on a pillow, it's like I'm laid on a brick. My head, it goes really tense. All my mouth it's like it's, I've got like a ton of bricks in my mouth. It's like, it's just like having numb, really numb teeth and numb faces and that. And then my fingers and my thumb and my hands go numb. And then my legs go numb. My knees lock. And I just think to myself, you know, 'I need shaking up. I need, I've got to be renewed again, you know. I've got to be a new person. If I carry on like that, maybe I'm going to end up in a box. I'm not going to be here any longer, you know.' But I just say to myself, 'Well, what's going to happen, it's got to happen.' But I'm trying my best. And I know, you know, if every, anything did happen, I just want my children to know that I tried my best to be a good mum. And what's gone wrong in the past, I tried to put everything right. I tried and tried, but I can't do any more. You know, I've tried and tried. That's the end of it now, that's all. So, but it's just all these panic attacks what get me down now, and anxieties and I get out of breath. And at night-time I'll be asleep and I'll wake up in, like I'm going down. And then I woke up in a shock and I can't breathe. I'm panicking, I've got to open the window, sit there and start puffing and making myself breathe. Then if I can't, if I'm not that settled, I've got to walk the rooms. And cool myself down, because I go really hot. It's like I'm on fire.
And it's awful, because one night I was just laid in bed and nowt never happened to me like that before. It just happened like I was laid in bed just normal, and all of a sudden I started dribbling from there. And then all my body went all cold like I was in an icebox, really numb. And my head, it was just freezing cold. And I was, my teeth was chattering. And I thought, 'Oh, well, what's going on here?' in my mind. And then all of a sudden I felt this rush come up to me, hot, really hot. And it went to my head and all I saw were red. I thought, 'God's ready to take me.' It only happened for just a second. It were like, I could see, it were just like the room went red and it were just like my body was on fire. And I went right into a deep hole, I can remember that. I went right, my, like my brain were going round, down, down, down into this like bright deep red hole. And then all of a sudden I just went numb and I went cold. And I felt all this thing come down me again. Then I was okay. And that really scared me, that night. It were just a weird thing that happened. And I just said, you know, said to myself, 'Well, be calm, [Shareen], you know. There's nowt, there's nowt there, you know.' And then I got up, had a glass of water, then I went into telly room, watched the television. Then I couldn't sleep.
Some of these physical symptoms could have had other explanations. Most of the people interviewed described issues relating to their physical health, including migraine headaches, tinnitus (ringing, whistling, buzzing and humming noises in the ears or head with no external source) and menopause, as well as alcohol and drug use (see Mae's story and Chapman's story). Also, some people thought their symptoms were caused by other symptoms (e.g. they couldn't sleep because they were hallucinating) or by side effects of medication (see 'Prescribed medication & side effects').
She feels like a different person and believes that some of her symptoms might be caused by the...
She feels like a different person and believes that some of her symptoms might be caused by the...
It feels me down, it feels me very down. Before I used to feel like heart racing, my back used to be tingling and my tongue used to be getting like tingling as well. Now I don't get that symptom at all. Because two years ago I just feel like a, like a scary person. I'm scared, I'm scared to lose this person and I'm scared to lose this person. And I don't get anxiety now. I get tired. I get lazy. I don't feel like to do anything. I feel like lonely. And but this moment and this, because I'm, I think, I think, I'm 38, because I change myself a lot. I'm not rely on my husband like I used to do. I do things for myself. And then I don't like it because I'm not used to it maybe doing them things. And then I think that, 'Why I'm like that?' But then I think it's, might be my hormones changing me and I'll be like the woman, not child any more. And then the things that, then I get scared about, then I see things about men and wives, sex and stuff like that, and I don't like it. And it just flashes in your brain keeping, and I don't like it. And I want to be like a, a normal girl, you know, normal, normal woman too. And then I push my head, then I start thinking good stuff. My brain is, it don't think good stuff'
One thing I think is when, about a year ago I was slowing down my period and I felt dizzy in my head. And then I felt really down like somebody had washed me and had drained me. And I felt like that. But I didn't took any notice. I thought it was just nothing. But I think it's, I think it's my period or my hormones today because I was a lau-, I were fit girl, I were laughing girl. Like anybody fall out with me I used to get upset. Anybody didn't ring me, I used to ring them. But I'm not bothered any more. I'm changed completely, I'm changed. And that makes me very, because you'll never be the same person anyway.
And did you, what does the doctor think of that?
The doctor always put to anxiety. They don't really know, because people, don't know what when they go through. When they go through they understand. But my sister's, she's different to me, she's different. I'm, I'm not that kind, I don't get angry. I might, two or three months I might not cry.
Other symptoms
Other unusual symptoms included feeling afraid - either in general, “I felt fear in me” - or afraid of specific things, for example, being afraid of men or afraid of silence. One person was afraid to look into people's eyes. Several people were afraid of death and felt as though they "could be gone any time”. A few people referred to feeling like a different person than they were before, or feeling like two different people (see Shareen's story). Others described having intense on-off relationships. Some described feeling angry, being violent, “smashing things” and threatening to beat their children.
He describes his various symptoms, including feeling vulnerable, "horrible images" in his head,...
He describes his various symptoms, including feeling vulnerable, "horrible images" in his head,...
And I get all kinds of horrible images coming up in my head usually, usually images of death or something or somebody's I knows died, something really, really unpleasant. That, that's one of the symptoms going, this is post medication. Pre medication I could flare up very easily and just start smashing stuff. Screaming, crying, go missing, I'd be in very bad way completely. So after the, post medication, post 2002, I'm very much, my pain is very much internalised. And it's insular, but it doesn't take control of me. I just think to myself, well look this is nasty stuff going in your head. You're just going to have let it run thorough you system and it will stop, whereas before I didn't have that kind of cognizance of it. I just, I just get the wrong stimuli especially if somebody told me something I didn't want to hear and I just go bananas. I'd really, really flip out and just terrify everyone around me. So those are my symptoms. And prior to that even I'd, I'd, I, when I was a kid, when I really, really young I'd just be screaming all the time. And just oh it was just terrible.
Overall, people felt that their symptoms made them lose control over their thoughts, feelings, behaviour and even their life, describing their condition as “hell” or a “curse”. Most experienced cycles of illness followed by periods of feeling well and being able to function (sometimes with the help of medication). Although some had lived with their symptoms since childhood, many said they had changed or even improved over time.
Last reviewed September 2018.
Last updated February 2013.
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