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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.

 

She found it difficult to describe panic attacks in her own language and says if you can't speak...

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She found it difficult to describe panic attacks in her own language and says if you can't speak...

Age at interview: 25
Sex: Female
Age at diagnosis: 23
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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...

Age at interview: 36
Sex: Male
Age at diagnosis: 30
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Even from your GP you don't get the time to explain things. He just gives you a few minutes or whatever and then, you know, I mean, the one I used to have when I was younger we used to be there nearly every week to him and, but because I couldn't describe the psychological fears I was always describing things like, my stomach aches or headaches or, you know, not, having appetite and stuff. Because I didn't even know that, you know, what anxiety was. I couldn't, I didn't even know what the words were for that. And he used to, you know, give me certain sort of vitamin tablets or whatever or, and, you know, he'd, he'd ask me things like, 'Are you, you know, worried about certain things or whatever'. But I was that anxious I didn't know what to describe in, what I'm worried about because there were so many different things. And the only thing I could clearly describe would be I was worried about, was school, you know, exams and things like that.

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.

 

When she was in hospital, she didn't tell anyone that she heard voices, only that her "head was...

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When she was in hospital, she didn't tell anyone that she heard voices, only that her "head was...

Age at interview: 42
Sex: Female
Age at diagnosis: 34
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I started to talk after about a week. Still didn't understand why I was there. But I did know that I heard voices, but I wouldn't tell them that. I'd just say my head was noisy. And so that I always kind of knew somehow, somewhere, that if you told someone that you heard voices, they'd lock you up. So I was not going to say that'

And my daughter, being the carer, was the only person who cared enough to notice something wasn't right, to then tell my doctor that, 'She's not right. Something's wrong.' And for him to then not refer me back, you know, to, to go into hospital, but to actually look for some counselling for me that I could have s-, a forum to talk. Even though I still didn't tell anybody I heard voices. I just said my head was noisy and I got so confused and I can't filter out conversations. I still find it difficult now.

 

She believes people use different terms to describe how they feel but it all stems from depression.

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She believes people use different terms to describe how they feel but it all stems from depression.

Age at interview: 42
Sex: Female
Age at diagnosis: 32
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I think a lot people, men and women, are suffering from depression without us knowing it. We say it aches here or there; in the stomach or in the leg. But in fact all of that is from depression. Whether one feels frightened or his heart races, it's all from the same thing.

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').

 

Niabingi thought hearing voices was "natural", but when her mum first took her to the doctors,...

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Niabingi thought hearing voices was "natural", but when her mum first took her to the doctors,...

Age at interview: 42
Sex: Female
Age at diagnosis: 25
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First of all I thought it was thoughts, then it became stronger and stronger and I thought oh, and then I thought oh I'm experiencing sort of like some kind of telepathy or you know, or, and voices and it felt like it was voices. And that's, when, when, it got to that stage I thought oh this is a bit strange but then, oh as well as thinking it was a bit strange I also had a thought that oh everybody has this, but I'm the last one to find out you know, you know, they haven't been telling me about, this is all about growing up. 'Cause I was young then, I was early twenties you know, and I thought oh this is you know, you know, I found out on my own and everybody has been experiencing this but nobody told me. So yeah I thought you know, I thought it was natural, I thought everybody, you know, it was just a part of growing up.

How did you feel about it when it was happening?

Oh I wasn't, I wasn't frightened, I felt in a way I felt quite excited you know, oh great you know, I'm in at last because you know, you know, everybody you know, thinking that everybody, but wondering why people hadn't explained to me that this was going on. But I, I wasn't frightened, I wasn't frightened, it was just, it was just, I just thought it was natural. In some ways you know, some of the things they were talking to me about nature and stuff like that and about death and life and death and I thought oh you know, it's quite beautiful, quite beautiful things I'm hearing, yeah.

And so at what point, you said your mum came along and noticed something wasn't quite right.

Mm yeah well I got, well I got, at the end of the year when I went back home she noticed that I wasn't eating properly. She said she noticed that I wasn't eating properly and that I used to sit and stare at lot. So she then got the doctors involved then. You know, she took me to see somebody, asked me to go and see a doctor for myself which I did do. but at first they said nothing was wrong you know, nothing was wrong but she persisted and eventually got Social Services involved and they eventually insisted that I went into hospital.

 

She told her doctor she had an "uncomfortable" feeling in her chest and back pain. (Original in...

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She told her doctor she had an "uncomfortable" feeling in her chest and back pain. (Original in...

Age at interview: 48
Sex: Female
Age at diagnosis: 46
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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'

I always want to reduce my stress. I always feel like I have a lot of things to think about. Like I feel uncomfortable at my chest, I went for check up in hospital and said I am fine. I still feel that uncomfortable feeling at chest all the time. I hope that counselling could help. 

You said you were sent to hospital for check up. What was the check about? Where did you go for it? 

Check at [local hospital] they said I am alright. 

Doctor said you are fine after heart check up?

Yes, no problem with my heart. But feel pressed at chest. And after taking this medication, the side effect of it is pressure. You worried there would be side effect. My back feels very painful.

From what you said seems that you were not formally referred to psychiatrist by your GP. 

No, no. I don't know whether I am ill to that stage or not. I don't know really.

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...

She wanted "proper help" from her GP so she told her if they didn't admit her to hospital she...

Age at interview: 42
Sex: Female
Age at diagnosis: 32
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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'). 

 

He says that there's a difference between "normal" behaviour and his symptoms and it might be...

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He says that there's a difference between "normal" behaviour and his symptoms and it might be...

Age at interview: 50
Sex: Male
Age at diagnosis: 20
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No it's out of the norm. You know yourself which is normal in your life, and when things start to steer away gradually, it, it happens so gradually at first you don't notice this, is that your norm. But when it's, it's ex-, I've got a pronunciation problem, exacerbates I can't say that word, when it escalates to a degree where you say, 'Oh my goodness what is happening to me? Or when you find I can't believe what's going on in my, what's happening in my mind or how I'm feeling. It's, I don't, never felt this way before, I think this is the time you ask the family or close ones to say you notice something not right about me? they might notice something before you do and tell you, '[Lorenz] you're not acting your normal self,' or 'What's the matter?' 

Then you consciously you either brighten up and say, 'Oh probably I'm not, there's something disturbing me.' And I find when I'm out of my norm this is really I become, beginning to get mentally ill and yet again my norm is not the same as another person's norm because where if I sort of shake my head and things like that it might be somebody's norm not portraying a sign of going, you're having nervous problems or whatever, it may be what I used to do as a habit or something, it maybe a habit. People habits are different and confusion can cause where a person's habits can be said to be a mental illness. I think certain habits can be classed as mental illness I suppose but it's their habit and if you recognise their habit is something if they want, if they say they're happy with it and they're living with it and they can control it and it doesn't ex-, what was it, overtake their lives. You know, if they're continually washing their hands or something and they find that it's overtaking their lives, they can't do nothing help it but always have to go up to the sink well it needs some sort of investigation into how they can manage it. Now they might not take it away altogether but they have to manage it to a degree acceptable to them.

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...

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She was worried that her panic attacks were really a sign of a physical, not psychological...

Age at interview: 25
Sex: Female
Age at diagnosis: 23
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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...

Age at interview: 39
Sex: Female
Age at diagnosis: 24
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And now it's my, got really, getting out of bed in the morning, hot flushes, sweatiness, shakiness. And sometimes I feel like I've got something in my mouth like a ton of bricks. When I talk my tongue's sometimes twisted and my throat dries up. I get out of breath. Sometimes I get like a feeling that I'm not the same person. And I get angry'

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.

 

He describes how, when he gets depressed, he feels as though his head is burning and itching.

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He describes how, when he gets depressed, he feels as though his head is burning and itching.

Age at interview: 60
Sex: Male
Age at diagnosis: 17
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Well when you, when I'm depressed for myself I, 'Oh what's going to be happening why is it, why is my head is burning,' and then a lot of the time is a lot of worry that comes, a lot of worry then inside, inside is not sound. I mean so that puts you from the food and sleep' It's, you just are wondering why this happened, what am I going to do, why it happening, am I going to die, then I will go ill my, if it is not stopping if I don't sleep or if don't eat, if I don't, not stress , not stopping the worriness, you know, the exhaustion, what do you, you know, exhausted and depressed'

I don't know why my head is not well. Sometimes I open the back door of the garden, of the restaurant and get some air because my head is burning, my head is hot so I get the fresh air or itching and things like that. And after a few days, after a few weeks, after, I'm alright.

 

She describes shaking uncontrollably. Text only

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She describes shaking uncontrollably. Text only

Age at interview: 60
Sex: Female
Age at diagnosis: 40
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My problems started in the year 1997. Around this time was when my mind started to have problems. When I was washing my face, I felt like there some energy running up from my body to my head. Not thinking anything of it, I went to bed after. In the middle of my sleep, I started to laugh uncontrollably then my hands started to shake involuntarily. Naturally, I felt scared because of this. I tried to sit up and get a drink of water, but the shaking continued. That's how it all started. I then went to see emergency services at the hospital. Soon after I arrived I felt fine, but then later after I left my problems persisted again. At times I would not be able to walk at a faster pace, or I could not do things for myself properly. I went to see a few doctors but the situation is all the same. That's how it all started.

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...

Age at interview: 38
Sex: Female
Age at diagnosis: 24
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Can you tell me a bit more about what kind of symptoms that you have? How, how does it make you feel?

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.

 

She also has tinnitus and migraines; she describes similar symptoms for these and her mental...

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She also has tinnitus and migraines; she describes similar symptoms for these and her mental...

Age at interview: 49
Sex: Female
Age at diagnosis: 44
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I see things which is not there, I hear things which is nobody speaking and they scanned my brain. They said it's a part of my illness and I suffer with a severe migraine. Migraine, yeah, and tinnitus. That is illness as well. So my doctor said to me if they are not getting better, so she is going to refer me to a specialist.

Do you understand what tinnitus is?

Yeah.

What is it exactly?

People are hearing things, buzzing ears and hearing noises, you know, funny noises, funny voices.

And what causes tinnitus, do you know?

Yeah, depression, illness.

Is that what you've been told?

Yeah, yeah. I've got the leaflets you know, they say that some people having it when they have a severe infection in their ears but I didn't have that. I had it about 14 years ago and my ears were blocked, but at that time I didn't have that problem at all, so I don't think it was that, so only thing it can be is my illness, they say it's my illness because two years, about two years being [sighs] very upset, I've never been in my life that upset.

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,...

Age at interview: 37
Sex: Male
Age at diagnosis: 37
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Well the more recent stuff is just feeling utterly, utterly crushed and feeling completely despondent, friendless, helpless, and completely vulnerable in a very hostile environment. I mean it feels that if I open the door poisonous gases are going to rush in and kill me. It feels, when I hit days that are not good it feels like there's been a nuclear war and everywhere is poisonous and radioactive.

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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