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Mental health: ethnic minority experiences

Getting a diagnosis of a mental health problem

There are currently no 'tests' for mental health problems. Usually a psychiatrist makes the diagnosis on the basis of his/her observation of symptoms and comparison with a 'diagnostic schedule'. Diagnosis is not a straightforward process and people can find it difficult to get their mental health problems recognised or can feel that they have been misdiagnosed (given the wrong diagnosis). 

We interviewed 30 people diagnosed with one, two or even more mental health problems, including:

  • Anxiety, stress and panic attacks
  • Social anxiety disorder and generalised anxiety disorder 
  • Depression
  • Psychotic depression
  • Schizophrenia and paranoid schizophrenia
  • Schizo-affective disorder
  • Bipolar disorder (or manic depression) and bipolar affective disorder 
  • Borderline personality disorder and anti-social personality disorder 
  • Eating disorder 
We also interviewed people with a learning disability and/or severe mental impairment.

Getting a diagnosis
Diagnosis usually followed assessment by a GP or psychiatrist, and sometimes followed admission to hospital. One woman's assessment was ordered by the court. Some people said they had not been told their diagnosis, and one woman didn't find out hers until she saw schizophrenia written in her notes. 

Several people we talked to described seeking a diagnosis, but some said it took a long time for their problems to be diagnosed, or to get a diagnosis that they agreed with or "felt they could accept" - almost 30 years in one case. One woman, eventually diagnosed with bipolar disorder, said her symptoms were disguised by her alcoholism. Others hid their symptoms from their doctor or found it difficult to admit to themselves that there was a problem (see 'Onset of mental health problems'). Sometimes the delay seemed related to disagreement amongst the professionals about conditions such as personality disorder and anxiety.

 

David explains why it took so long to get a diagnosis and believes that this changed when he got...

David explains why it took so long to get a diagnosis and believes that this changed when he got...

Age at interview: 37
Sex: Male
Age at diagnosis: 37
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And so what I mean how do you make sense of the fact that took long to get a diagnosis I mean you, you said a little bit about one thing that was, could, could you say a bit more about that do you think?

I think it was lack of understanding and I, I still think there's a major, major lack of understanding in mental health services about what is a mental illness. I think a lot of people will think that you're being weak. And I've, I've come across the attitude quite a few psychiatrists who seem to have the impression that I'm malingering somehow or, or dodging work, which isn't the case. If I really wanted to dodge work I wouldn't have gone out and got a degree, in fact two degrees I might add, I've actually got two degrees, so I wouldn't have got those qualifications if I'd had any intention of malingering. One doctor in particular didn't think that I had BPD at all because her, her PhD, and she was resting on the fact that her PhD was in BPD. And she said, 'You're not showing any of the traits of it at all.' Which in my opinion is, is quite ridiculous in fact, not just strange, because it's quite obvious that I'm showing the traits of BPD, intense on and off relationships. I haven't experimented with, with alcohol. I've got to admit I have smoked a lot of cannabis in the past. And just, just I am showing traits of BPD probably a bit of narcissistic personality disorder in there and maybe avoidant personality disorder. But I'm showing a lot of disordered traits and that. And the psychiatrist in question seems to think that reading about Gandhi and The Dali Lama would be a panacea for my problems.

I don't know how she came at that conclusion at all. But I didn't think I was in any position to question so I didn't actually go along with what she'd said because I thought it was quite frankly ridiculous. So after that, that was about five years ago, I've kind of been bouncing around in the ether between one different psychiatrist and another. And I remember my first point of contact with the psychiatric services, the first question I was asked, 'Don't you want financial independence?' Which doesn't seem to be a very appropriate question for someone that's, you know, not really able to think about what time they're going to get up, let alone financial independence. So I've encountered quite a few interesting situations let's say. 

Hmm. So what do you think changed then to, for you to be able to get these diagnoses all of sudden that, that now you agree with?

I think having, I think having a sympathetic psychiatrist helped. And I also think having one, my psychiatrist is from an ethnic minority, and I think that helps quite a lot. Because prior to that I hadn't actually had a psychiatrist from an ethnic minority and that's made a big difference, because I think their own personal experiences, they'll know because they're of the same kind of age, they're kind of my coevals as it were. They'll, they'll know about the experiences that I would've been through. They would've had a taste of it themselves. And they'll know what it really feels like to, to basically have every door slammed in your face.

A few people mentioned diagnosing themselves after identifying symptoms described in information they had read or heard about from people with the same condition.

 

Shaukat diagnosed himself after reading about social phobia and then meeting people with...

Shaukat diagnosed himself after reading about social phobia and then meeting people with...

Age at interview: 36
Sex: Male
Age at diagnosis: 30
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And I think I read some where about the National Phobic Society. And then, you know, wrote to them and got more information. And I read some of the things in there. And then I sort of knew that I was suffering form some kind of anxiety but I didn't know what. And I saw just about, I saw, I saw sort of descriptions of how people were saying they were suffering from sort of social phobia but I didn't know what that meant. So there was other people's descriptions saying, you know, I'm suffering from this and they needed support or whatever and they were asking for sort of email contact or, you know, writing letters. So it was like a contacts list on their newsletter that I wrote off to somebody this girl in she lived in Rochdale I think at the time and that. And I said, you know, I may be suffering from this , you know, and if you've been doing it, and you know, I'd like to know more about it or what help you had. She told me about this group in [nearby city]. I mean I was always reading, you know, reading different things about anxiety and that. And I read the term social phobia but I didn't, you know, I associated phobia with something like extreme, you know, like the fear of heights or fear of spiders or whatever that you totally have to avoid or. I didn't see it as being associated with being around people because, you know, how can you be afraid of people? And so she told me about this group which I went to and that's when I knew in myself that, you know, when I spoke to the group or, you know, that were suffering themselves I told them about myself and what feelings I had and, you know, they agreed that this is, you know, what, what it is. And I sort of, that's when I self diagnosed myself basically.

Getting a diagnosis mattered to some because it meant they felt they weren't to blame for their behaviour and people would see that they were 'really' ill and not exaggerating or imagining it. It also meant that they could learn more about their condition, access treatment and be eligible for social security benefits. One man's diagnosis of bipolar disorder, however, did not lead to successful treatment. For some people who were diagnosed with schizophrenia, the diagnosis meant having to live with a "difficult label".

One man was diagnosed with severe mental impairment which meant he could be given medication without being sectioned because of the Bournewood gap. This is a gap in the law that allows mental health inpatients who lack capacity to make decisions or consent to treatment, to be given hospital treatment informally, without the need to section them under the Mental Health Act.
To stop the abuse of this gap in the law, the government introduced the ‘Deprivation of Liberty Safeguards’, which came into force in April 2009. This is a mechanism by which people can challenge the compulsory detention of people who are unable to speak for themselves. Large numbers of people are detained informally but unfortunately many families still don't know the safeguards exist, and as a result, very few have been challenged. 


Feelings about being given a diagnosis
Receiving a diagnosis caused people to experience a variety of feelings. Some felt glad or pleased to know what was wrong and readily accepted their diagnosis because they associated their symptoms with that diagnosis or condition. 

It can take time to come to terms with and accept a diagnosis, especially when you do not fully understand what the diagnosis means. Some found a diagnosis difficult to come to terms with because of the stigma attached to having mental health problems (see 'Discrimination due to mental health') and concern there is no recovery from mental health problems (see 'Recovery'). One woman said her diagnosis of depression was unexpected; at first she couldn't identify with it because she thought of herself as a 'strong Black woman'. One man initially resisted the diagnosis of schizophrenia because he thought the psychiatrist was trying to control him, but after his second breakdown he agreed that what he experienced "wasn't normal".

 

Lorenz describes coming to accept his diagnosis of schizophrenia and why he thinks the diagnosis...

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Lorenz describes coming to accept his diagnosis of schizophrenia and why he thinks the diagnosis...

Age at interview: 50
Sex: Male
Age at diagnosis: 20
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At first I didn't accept it until I had, in fact had about four mental breakdowns. The first mental breakdown was the most bizarre but I couldn't call it what they were calling it. 

Now they call it psychosis as such but it was known as schizophrenia, I was schizophrenic basically and I couldn't accept that word for a little while. And then I had my second breakdown and I accepted it that there is a condition I've got which needs medication really but the psychiatrist simply wanted to, I feel like they wanted to control, to control me in a sense that I might do something wrong or bad.

Some people we interviewed felt angry or worried when they were diagnosed. Some people were given a different diagnosis in the UK to the one they had received in their home country and this could be confusing. One man felt shocked when he was given a diagnosis of paranoid schizophrenia in the UK after having been treated for 'obsession' in Brazil.

 

Ugo describes her feelings and concerns about being diagnosed with personality disorder.

Ugo describes her feelings and concerns about being diagnosed with personality disorder.

Age at interview: 38
Sex: Female
Age at diagnosis: 31
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Did you try to find out information about the diagnosis that you were given?

Yeah I talked to people who've been my social worker as a child and that and they said personality disorder is given to people who they can't tick the boxes and put them into a box and that it was a social worker who'd known me from a child and he said, 'You haven't got personality disorder, they only give you that because they can't put you into a tick box, under a certain diagnosis so, it's easier for them to give you a personality disorder.'

And how did you feel about'?

Very angry because I was thinking oh I'm glad I've got a diagnosis, I know what's wrong, I didn't know, understand what it was but I had a diagnosis and then get told it's only because they can't find a diagnosis so they've put you in a tick box of personality disorder. And now because they're saying they're going to stick all people in prison who've got personality disorders before they commit an offence and I'm thinking is that going to happen to me at the end of the day?

Mm, is that a real concern for you?

Yeah.

Disagreeing with a diagnosis
When people disagreed with a given diagnosis it was usually because they couldn't recognise in themselves the symptoms they thought were associated with that condition. In a few cases, other people, including friends and mental health workers, also said they thought the diagnosis was wrong. Many of those people who disagreed with their diagnosis agreed that they had some kind of mental health problem, and suggested an alternative diagnosis that felt more appropriate. One Asian woman's view that she had been misdiagnosed with paranoid schizophrenia (instead of an eating disorder) was later confirmed by an eating disorder specialist.

 

Sara recalls being diagnosed with paranoid schizophrenia instead of an eating disorder and says...

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Sara recalls being diagnosed with paranoid schizophrenia instead of an eating disorder and says...

Age at interview: 31
Sex: Female
Age at diagnosis: 17
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And I got to hospital and this is the bit that I really, you know, I can't get my head round that. I was, they wouldn't have me in the house, because I was obviously, I was stealing everybody's food and I was out of control but they kept me in hospital, but they said that what I was doing, i.e. stealing other people's food and eating when I wasn't hungry was actually psychotic behaviour and they gave me a diagnosis of paranoid schizophrenia and started treating me with antipsychotic drugs. And, you know, I know a lot about antipsychotic drugs because I, [of my degree] and I read about the effects various drugs and you know, antidepressants, antipsychotics, so I knew that were really, really horrible drugs and that I didn't want to go on them. And I refused to take them at first, but you know, ultimately they put me on injections so I couldn't refuse and I was on section. 

 And nobody would listen to me. I couldn't get anybody to listen to me. You know, they didn't, they stopped, they didn't believe I had an eating disorder. They thought, initially they thought I had, but then after they got information from the people where I live about my previous acting out, they decided that I didn't have an eating disorder and I was actually psychotic. And I do still think that if I was a white middle class woman and I'd gone in there then I would probably have been treated for an eating disorder and not a mental illness. I suppose an eating disorder is a mental illness, but it is a sort of different one. And yes, I was in there for nine months on a section two and three and I was absolutely terrified…

I mean there was a, the psychiatrist who finally said that, “Actually I don't think that you are schizophrenic,” I think, you know, just him as an individual and obviously at the eating disorder place they were trained in eating disorders so they said, “Okay, your behaviour, you know, stealing food and everything to an untrained professional may have looked like you were psychotic, but a trained eating disorder professional who knows about the effect of starvation on the brain etc, etc would have seen that behaviour and understood it in the context of your eating disorder.” 

Some people we talked to disagreed because they said the tests they had undergone did not support the diagnosis as they understood it. Some thought that the assessment process was inadequate and inappropriate. One woman said she was diagnosed with schizophrenia in Hong Kong after completing a short questionnaire; another person's assessment took only 5 minutes.

Others wondered whether their diagnosis was correct when they could find no cause for it. One man thought he had no reason to be depressed and didn't 'believe in depression'. Another man with bipolar disorder questioned whether his initial diagnosis of cannabis-induced psychosis was correct because he no longer smokes cannabis, yet still experiences the 'highs' (cannabis-induced psychosis has been found to lead to other psychiatric conditions). A woman diagnosed with schizo-affective disorder questioned her diagnosis because she thought that there was too much variation in the symptoms of other people with the same diagnosis for it to be a reliable diagnosis. Another young man questioned his diagnosis of paranoid schizophrenia because the medication he was given didn't work
.

 

Chapman explains why he thinks he was diagnosed with paranoid schizophrenia and says if the...

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Chapman explains why he thinks he was diagnosed with paranoid schizophrenia and says if the...

Age at interview: 23
Sex: Male
Age at diagnosis: 20
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Is there anything that does help you?

My medication doesn't even help. 

It doesn't?

No, I asked my doctor if I could get that changed. I don't think he had the time to , because I didn't, I didn't want to talk a lot in the, when I got admitted, I didn't want to speak a lot so I think he just got fed up of me being quiet and just decided to discharge me and just diagnosed me with something that I don't even, I'm not sure I have.

Okay and you said they gave you the paranoid schizophrenia diagnosis, and did you say you don't agree with that?

No, I just think he just got fed up of me because I was taking drugs in the hospital, I was taking crack and heroin in the hospital ward.

In the hospital? 

Yeah and I think he got fed up of that, because I tested, my urine sample tested positive for crack and cannabis and heroin. So I think he got fed up of it or something, but it must've been something like just ticked him off and he thought no I'll just diagnose him with paranoid schizophrenia. And get him out of here.

How did you feel about that then, getting that diagnosis when'?

I wasn't bothered, I was like, 'Oh okay.' 

You said that you don't agree that you have this diagnosis of paranoid schizophrenia. So do you think it's something else?

I think it's something else.

Right. What is it do you think, have you got an idea of what it might be? 

I don't know.

Okay. And I know you said why you think he gave you that diagnosis, but why do you think you don't have that, is there something about that diagnosis that you think is not right for you?

Because if I had that the medication that I'm on would be working but, would have made a difference but it's still the same up to now, there's nothing, nothing's changed, it's still the same voices, hearing the stuff, seeing, seeing the stuff which I don't want to be seeing. Images and all that.

Okay. So what do you think caused you to have this mental health problem, in your view?

The loss of my sister, hallucinations, the loss of my mum. That's why I'm saying I don't think it's paranoid schizophrenia but I don't know what it is, maybe it's paranoid and depression.

Right. Is that something you feel, depressed?

I don't know.

Other people who disagreed with their diagnosis thought that their symptoms were caused by something other than a mental health problem such as a physical problem or in a few cases by antipsychotic medication, which can cause psychotic symptoms as a side effect (although this is rare). Some people thought that the process of diagnosis was so imprecise that the system might give a diagnosis of personality disorder when they cannot find another suitable label [see Ugo above] or that it was possible to interpret anyone's behaviour as indicative of mental health problems. Some felt that diagnosis could be influenced by cultural stereotypes, racism or class [see Sara above] and thought that doctors don't acknowledge the consequences of giving someone a mental health diagnosis.

 

He says that ethnicity influences diagnosis and in his view people have a "micro-ethnicity" and...

He says that ethnicity influences diagnosis and in his view people have a "micro-ethnicity" and...

Age at interview: 49
Sex: Male
Age at diagnosis: 15
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Right, Well. I mean the Scottish Mental Health Act, which was the one that the government was asked to incorporate into the new Mental Health Act and it refused to do, made it very clear that the same criteria for diagnosis should apply whatever a person's ethnic group happens to be. But that was refused by the English legislators and I think it's more or less accepted that mental illnesses present in different ways in different types because they, their presentation at least is socially shaped and that at least in some people's opinion there are many different kinds of schizophrenia, for example, and that Jewish schizophrenia might be different from Afro-Caribbean schizophrenia and British schizophrenia and therefore the criteria for diagnosis and the method of treatment might be different and that there is therefore a, an unspoken professional folklore, what I call ethnomethodology which, which tells people how to make up your mind about these people. These people and why they're different and why they special criteria have to be applied to diagnosing them and treating them and assessing them and their risk. And I suppose that' that as long as we have this very untransparent secretive code that we can, you know, we don't, we just don't know what is going on behind the scenes.

And, you know, there are medical anthropologists who try and, and produce value-free judgments about people but I don't think the work has been done unfortunately to interview lots of people from one ethnic group or another ethnic group and find out how their particular ethnicity shapes their presentation. Actually I suspect that it isn't down to ethnicity, it's very, very individual. And that, that everybody has a micro-ethnicity which is unique to them. And the only way you'd find out about this micro-ethnicity is by talking to people and getting accurate information from them and about them but there's no way that will happen whilst people are so dependent on received opinions about, you know, Jews having sex with their mothers.

 Personally I think that, that we would do better going back to first principles, actually, I don't know if I've said that phrase before not in this interview yet and, and, and starting off with a strict medical-legal definition and then as we get to know the person as, as an individual through observation, through acquaintance we add in the, the cultural dimension, that the social model should never be the first thing we lean on. That, that we should explore that and that we, we should I guess one of the purposes of the CPA process, I don't know if we mentioned that here, is that it should look at the patient's broad holistic identity which includes, you know, their physical health and it includes, you know, their relationships with the wider community and that includes that, that is their cultural identity partly, and that their religious identity which is part of a, social religious identity, we're not, I don't think we're, we should be interested in their, their relationship with God really. But that's not something you, you, you look at first of all. It's very presumptuous of you to do that. If you try and do that you're sure to jump to the wrong conclusions.

One man couldn't say whether he agreed with his diagnosis or not because he had "little understanding of the psychiatric side of it" and thought that his psychiatrist would be better able to comment. He said he didn't feel anything about his diagnosis because he didn't have normal feelings. Another man also said he wasn't worried when he got his diagnosis because he didn't have the responsibility of a wife or family at that time.

Last reviewed September 2018.

Last updated June 2015.

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