There are currently no definitive, objective 'tests' for mental health problems. Usually a psychiatrist makes the diagnosis of schizophrenia or psychosis by asking a patient questions and observing them and comparing this to a ‘diagnostic schedule’. The people we spoke to said that being diagnosed was not a straightforward process, as is illustrated below. Occasionally professionals delay giving a diagnosis of schizophrenia as they want to make an assessment of someone over time.
Many of the people we interviewed have, at some point, received a diagnosis of schizophrenia or psychosis; however there were a number of people we spoke to who had not received such diagnoses. Many had similar experiences such as all, or some, of the following' hearing voices, experiencing paranoia, taking anti-psychotic medication or having compulsory treatment. Other people received different diagnoses, such as psychotic depression, schizo-affective disorder, bipolar affective disorder, depression, anxiety, borderline personality disorder, stress disorder, obsessive compulsive disorder and post-traumatic stress disorder. A few people were still unsure what their diagnosis was at the time of talking to us. For a full description of psychiatric diagnoses please see Mind's website.
Getting a diagnosis of schizophrenia
Many of the people we interviewed were given a diagnosis of schizophrenia in hospital by their psychiatrist or by other member of staff in hospital. A few people were told by their GP. However, some people said there was sometimes reluctance on the part of professionals to inform patients of their diagnosis. Some weren’t told about their diagnosis by health professionals and so found out about it in other ways. A couple of people only found out about their diagnosis many years after they were considered to have schizophrenia by doctors. In some cases people found out by reading through their medical notes. Georgina found out about her son’s diagnosis from a letter about his benefits, whilst another was referred to the National Schizophrenia Fellowship (now Rethink) before she even knew she had been diagnosed with schizophrenia.
Tom was diagnosed with schizophrenia after spending time in a day centre supervised by psychiatrists. He felt both upset and relief.
Tom was diagnosed with schizophrenia after spending time in a day centre supervised by psychiatrists. He felt both upset and relief.
Age at interview: 39
Sex: Male
Age at diagnosis: 21
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In [place name] where you sort of you know, you were under psychiatric supervision or you were close to, you know, you, a place where you’d go, you know, a day centre where you’d just go and pop in and spend the day there and be near the psychiatrists and things and have, you know, be interviewed and people talking to you and stuff. So I did that and shortly after, well, a few months after being there I started hearing voices and deteriorating rapidly and so I couldn’t but tell the doctors there about it.
And then I that’s when I was diagnosed as a schizophrenic.
Schizophrenic, sorry.
And what did you think about the diagnosis?
Well, I was very upset at the start of when I first was diagnosed just because I, you know, I thought, “Oh, well, this is just.” I just thought, “This is the end, this is the end of my life, you know, my life is over now.” So I was very upset and but also quite relieved because I by that time, I knew that something would be would be done about my, about what was going on. Something would, you know, somebody would get something done. They’d give me some tablets or something or send me to hospital for a while and then, I’d hopefully, I’d get a bit better. So it was a combination of upset and relieved.
Pete was told by a consultant that he was a 'chronic schizophrenic' and that he would never work again.
Pete was told by a consultant that he was a 'chronic schizophrenic' and that he would never work again.
Age at interview: 48
Sex: Male
Age at diagnosis: 30
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I was embarrassed to say I heard voices, the most problematic was the amount the drugs they gave me because when I eventually did get a diagnosis, the Consultant who gave me the diagnosis he, I can remember his words as clear as anything, he said, “Mister Bullimore you are a chronic Schizophrenic, you will never ever work again, go away and enjoy your life.”And I remember thinking ‘well how does that work?’, and he says, “Take these drugs and they will cure you.” Which is a complete lie because it never cured anybody in a hundred years but, but not knowing that I complied and I was very compliant to the point where I was taking twenty-five anti-psychotics a day. And I couldn’t walk me arms were rigid in front of me, I was a shuffle feet, I wouldn’t dare try and shave because I would have cut me head off with [laughs] with the razor. But that’s what people thought Schizophrenia was I personally don’t believe in Schizophrenia now but, that Pete’s a Schizophrenic, that’s how they look but it wasn’t it was the drugs.
People had mixed feelings about receiving a diagnosis of schizophrenia. For some people it was very upsetting. They referred to how frightening the diagnosis sounded; how people could assume they were dangerous; treat them inhumanely; try to control them; or assume they were a lost cause and could not recover. Some of those we talked to were sceptical about the diagnosis, while others were relieved to get a name that could account for what they were going through. For some people, a diagnosis also meant they could get the help they needed. Naveed found it difficult explaining his diagnosis to others, particularly his family, as there wasn’t the equivalent word in Punjabi. Another person found going to her psychiatrist with her symptoms and having them explained helped her to feel better, thus aiding recovery.
Rachel 'lost the plot', was found by her neighbours, and ended back in hospital where she was diagnosed with schizo-affective disorder. She thought it was 'the end of her useful life'.
Rachel 'lost the plot', was found by her neighbours, and ended back in hospital where she was diagnosed with schizo-affective disorder. She thought it was 'the end of her useful life'.
Age at interview: 47
Sex: Female
Age at diagnosis: 27
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I just lost the plot and was kind of found wandering along my neighbours who were brilliant and they took me in, and they got a doctor. And I don’t remember an awful lot about it. Because I was just in overload at that point, and, was not aware of what was going on. Apparently all I was saying was that I’d let everybody down. I’ve let everybody down. And they were incredibly good to me, and they got a locum from my GP’s surgery and she admitted me to hospital. And I was then given a diagnosis of schizo-affective disorder and I can remember [laughter in voice] the interview I had with the psychiatrist, just looking at if I was, you know, I thought I had manic depression or something like that. And she just said, “No I’m afraid it’s a bit worse than that.” And I just said to her, “Are you telling me that I’ve go schizophrenia?” And she said, “No. What do you do have is schizo-affective disorder.” And I thought that’s it. That is it. That’s the end of my useful life. And I think the [exhales] overall feeling then is that you are going to be like it for the rest of your life, and that is going to be your... experience in that you are going to be incredibly ill forever. And I think where hospital care can be lacking, or was, I’m talking about a while ago now, is that they don’t give you any further information. They just put you on a load of drugs.
Jenni didn't like the first doctor who gave her a diagnosis of schizophrenia and thought he might be racist.
Jenni didn't like the first doctor who gave her a diagnosis of schizophrenia and thought he might be racist.
Age at interview: 30
Sex: Female
Age at diagnosis: 26
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I didn’t get on with the first doctor, they were trying to keep me away from the doctor. But it turned out it was just that doctor. It wasn’t all of the doctors.
What was the matter with him/her?
He was just really like abrupt. I don’t know if he was racist, he was white, but he was really like, oh you’ve got schizophrenia. It’s the onset of schizophrenia and he basically acted like there was no hope for me. Whereas other people are like, “Oh you’ll get better.” And giving me practical advice like, wash yourself, go for some exercise, eat vegetables and fruit, and do you know what I mean? All the like practical skills that people have in life, but they go, they go out the window when you become unwell, because you kind of lose your grip on everything. So, no one was giving practical advice, they were just writing me off basically. That doctor.
Tim found it difficult to accept his diagnosis and hadn't heard of the term 'schizophrenia' before.
Tim found it difficult to accept his diagnosis and hadn't heard of the term 'schizophrenia' before.
Age at interview: 61
Sex: Male
Age at diagnosis: 19
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And can you remember receiving your diagnosis?
Oh yes, in 1970, they said it was paranoid schizophrenia. I came back from India. I didn’t accept it then. It took me 13 years to accept it completely. But they said it was always paranoid schizophrenia with a poor prognosis. I can remember it yes.
And heard you heard the term of paranoid schizophrenia?
No. It was a new one to me. I never thought I’d become a mental patient. In my teens I supposed I looked down on mental patients. Not any more. Since I’m one of them. Now I’ve never, I’ve always had the same problem. I stick to what Dr [Name] said forty or thirty five years ago. He made a life time’s study of paranoid schizophrenia and he knew exactly what to do. I stick to his treatment. I don’t go shopping around doctors or going for alternative, I don’t believe in alternative medicine. It doesn’t work. I’ve never tried that. I just stick to what Dr [Name] said.
And has your diagnosis ever changed?
No. It’s always been paranoid schizophrenia with a very poor prognosis.
Receiving different diagnoses
Many people said they had received different diagnosis over time, or had more than one diagnosis at a particular time. When people changed psychiatrist, their diagnosis sometimes changed too; one person moved around a lot and received many diagnoses. Some people felt angry that they were ‘misdiagnosed’ and that they had received the wrong treatment because of this. Colin had recently had his diagnosis changed to bipolar affective disorder and then was prescribed sodium valproate that ‘worked almost instantly’. Other people felt that they needed more than one diagnosis to reflect their different ‘symptoms’. Annie had been diagnosed with psychotic depression, chronic fatigue, anxiety, and adjustment disorder. However, she was later diagnosed with systemic lupus: an auto-immune disease which can affect the brain and sometimes lead to psychosis.
David was given a range of different diagnoses over the years and people have disagreed about which one he should have.
David was given a range of different diagnoses over the years and people have disagreed about which one he should have.
Age at interview: 31
Sex: Male
Age at diagnosis: 17
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When I was about 17, 18 this military psychologist said I had a stress disorder. Later on with doctors one of them mentioned that I had a personality disorder. And over time there were some that said, well we shouldn’t be giving you personality disorders, that basically means everyone’s given up on you. And some of them just went oh I’m going to say it’s borderline. And then since then, I’ve had people say you haven’t got one at all and then laughed. It’s... depression and anxiety too have both come out a few times and sort of stuck. Never really talked a great deal about the psychosis and that because I’m always afraid of consequences of what could happen. I mean some of my mates and that I’ve seen they actually have been racked onto really strong medication and sectioned and everything and, and been shouted out by, or their music tastes have been blamed for their current state.
Rachel thinks it's important to get the right diagnosis and found that her original diagnosis of schizophrenia didn't take account of her moods.
Rachel thinks it's important to get the right diagnosis and found that her original diagnosis of schizophrenia didn't take account of her moods.
Age at interview: 41
Sex: Female
Age at diagnosis: 19
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And what’s your attitude now to the diagnosis? In general the psychiatric diagnosis?
Well I think it’s important to give a diagnosis because when you read the symptoms, because I got the Oxford Book of Psychiatry and I thought they haven’t got me right. You know, they haven’t, they diagnosed me with schizophrenia and didn’t take into consideration my moods so they, you know, I’m schizo affective definitely in between the two, you know, definitely and I mean you need to read up a little bit, don’t take somebody else’s word for it really and you need to make sure that you feel happy with what they’re telling you.
William talks about his confusion when he received a diagnosis of intermittent psychosis when he had normally experienced anxiety, depression and obsessive compulsive disorder.
William talks about his confusion when he received a diagnosis of intermittent psychosis when he had normally experienced anxiety, depression and obsessive compulsive disorder.
Age at interview: 47
Sex: Male
Age at diagnosis: 45
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You were saying that the report said you’d had intermittent psychosis?
Yes, that was the one two years ago. Yeah. Yeah.
And what do you think about that?
Well... I think it might have been how I presented my feelings on the day when I went to see this psychologist. And I was, I think it’s because I presented something about not really understanding about feeling violent, [2 sec pause] at times. And... having less insight than I should have into it, I think. And it was my feeling that may be that’s what he thought.
But that’s all, you know, really I thought, no I can’t be that, I can’t, because I always that, you know, that [2 sec pause] when I was roughly the same, why would it be considered all the sudden I’m psychotic, you know, when I’ve had all the other labelling. So, I...there is a side to me that thought, no, and there’s a side to me that thought, well may be, you know, it’s... it’s what I said on the day. And, it could be something that is more newly developed. And, definitely not in my... you know, history. I think, yes
Finding out more and living with a diagnosis
After being told about their diagnosis, many people said they were not given enough information about their condition, and were left to find out more themselves (see ‘Sources of Information’). For instance, people said that, while professionals sometimes left them without a sense of hope, the stories of other service users could be inspiring. Green Lettuce read about psychosis on the internet and found that other people also experienced voices in the third person.
Rachel found that she had to accept her diagnosis and thinks it is important that people ask for help. She thinks that what a carer needs to know and what a service user needs to know are sometimes different.
Rachel found that she had to accept her diagnosis and thinks it is important that people ask for help. She thinks that what a carer needs to know and what a service user needs to know are sometimes different.
Age at interview: 47
Sex: Female
Age at diagnosis: 27
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The only thing you can do really, if you do want to come to terms with it, is to accept it. Say, okay, that is what I’ve got, what am I going to do about it. And... always, always ask for help. Always ask for help. You’re never on your own, and you’re not alone. And I think that initially is the biggest thing, the isolation that you feel, and I think that your family, carer or whatever feels. And I think because there is still this element of shame in the kind of older generation I think more than perhaps nowadays. But they don’t ask for help themselves and they don’t... discuss it. Which again in the initial phases is not an easy thing to do, because you’ve got so much you’ve got to deal with. And, again I think I would say that information is vital, but what a carer needs to know and what the service user needs to know, may not be the same thing at the same time, and that’s where you get an awful lot of conflict. Because in my experience your carer will want to know everything straight away. Me, as a person who is suffering from it would like to access it when I want to. Thank you very much. I don’t want a whole load of stuff on top everything else I’ve got to deal with.
Arwen didn’t know what schizophrenia was because she didn’t have a computer, and a social worker explained to her what her diagnosis meant. Now she thinks it’s important to have as much information as soon as people receive their diagnosis.
People’s attitude to their diagnosis changed over time. Some came to feel it was just something they had to live with, like other chronic illnesses such as diabetes. Others concluded that having a diagnosis didn’t define them, or tell people anything much about them. Some people moved away from a psychiatric interpretation of their experiences and developed different understandings of what they had been through. For example, people talked about the ‘Hearing Voices Network’ which helps people to better understand, live with, and accept their voices. Certainly, a number of people said there was nothing to be ashamed of in having schizophrenia. Stuart said ‘I’m very proud of the way people with schizophrenia conduct themselves’. Margaret cautioned that people should not take the diagnosis too seriously, saying that there is hope, and that it does not have to be the end of the world. However, there were sometimes serious consequences for people diagnosed with schizophrenia, and some people found that others reacted strongly to this diagnosis (see ‘Reactions of others and stigma’).
Ceridwen was told that if she had a baby it would be taken from her, and that she was no longer allowed to work with children or the elderly.
Ceridwen was told that if she had a baby it would be taken from her, and that she was no longer allowed to work with children or the elderly.
Age at interview: 27
Sex: Female
Age at diagnosis: 20
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I was told that if I had a baby they’d be taken off me straight away. I decided that contraceptive implant was the best way to go.
And when were you told that?
About a year ago. I had no intention of having a baby, but they said, “If you do, we’ll take we’ll take it off you straight away.” Oh fine [small laugh].
What was your reaction to that?
I was absolutely disgusted. I’m not allowed to work with children because of my illness, but I used to, before I was diagnosed, I worked at an after school nursery for four years, voluntarily. I would not hurt a hair on a child’s head. But because I’m schizophrenic I can’t work with children. I’m not really meant to work with the elderly, but they kind of turned a blind eye to that.
You know, places won’t accept you because you’re danger to others. So I can’t prove that I’m not. I know I’m not. But can I prove it? No you can’t prove it. Each, it makes me angry. Because the word schizophrenia, people hear it and they think “psycho killer”. And the news doesn’t help. Particular, I mean I have a friend who’s a paranoid schizophrenic, and she gets it in the neck, because it’s always a paranoid schizophrenic who’s killed a policeman. A paranoid schizophrenic’s killed someone. And she says, “I’m not a murderer, I just have an illness, you know.”
Graham used to think diagnosis was helpful as it was something tangible, but he now feels diminished by it, and thinks there are other ways of seeing reality.
Graham used to think diagnosis was helpful as it was something tangible, but he now feels diminished by it, and thinks there are other ways of seeing reality.
Age at interview: 47
Sex: Male
Age at diagnosis: 22
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I used to be clearer in my attitudes towards what we call mental illness. Now, I don’t know. I used to think a diagnosis was really, really useful. It was tangible, you could grasp it, you could either challenge or disagree with it or accept it. And it made sense of an experience that other people didn’t have. And now I almost reject the diagnosis because it feels like it defines you and it defines you according to other people’s values. And it can label you as a victim. You can almost conform to the stereotype of being a patient and what’s expected of you. You know, for the first time, all my life, you know, it’s now 27 years since I first came into mental health services and I never accepted I was a mental health patient, if you like, according to the stereotype. And now, you know, my, the people around me are wonderful who come and help me, but now I have no choice but people, if, if my nurse wants to come into my home, she’s got the right to. I can’t refuse it.
And it’s not that I’m different I just feel like a patient. I feel diminished. And part of feeling diminished means that I want to reject what they’re saying about me. And also I do really struggle with my beliefs. They’ve never completely gone away since I was out of hospital this, this time, so the feelings of evil are quite strong in me, but I’m very contradictory. I talk about spirits and evils and devils inside of me and yet I’m an atheist. So it doesn’t make any sense. But I don’t like to dismiss, even if it’s true that my beliefs are caused by illness, I think there are lots of ways of seeing reality. And in a different world we might not call that illness. We might just call it a different way of perceiving the world. And it’s, I don’t think illness is just a tangible thing. Illness is defined according to our society’s judgement about what is right and what is this and that. What is ill and what is healthy. And in some ways I live a very healthy life at the moment, but I’m seen as ill, and I’m seen as sort of severely ill.
A few people talked about the term ‘schizophrenia’ and whether it was actually useful as a concept, suggesting we know so little about the mind, and in time we will know much more. Others questioned the scientific basis for the term and suggested that a better expression was ‘integration disorder’. While a couple of people wanted to get rid of the term ‘schizophrenia’, one individual felt that people should concentrate on what gets people better and not waste time on this debate.
Andrew thinks that by abolishing the term 'schizophrenia' you won't get rid of delusions or paranoia, but that it could be replaced with something like 'perception disorder'.
Andrew thinks that by abolishing the term 'schizophrenia' you won't get rid of delusions or paranoia, but that it could be replaced with something like 'perception disorder'.
Age at interview: 59
Sex: Male
Age at diagnosis: 24
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But I think there is such a thing that’s described under the name of schizophrenia. I think there are delusions, there are paranoia and they do happen and by abolishing the term schizophrenia you’re not going to abolish delusions and paranoia. People will have paranoia, they will have delusions and it’s helpful to have medication that will stop the delusions and it’s helpful to have talking therapies that will enable you to come to terms with delusions and to address the problem of your delusions [coughs]. That won’t happen for everyone I know. There are unfortunately people who have delusions and paranoia and that remains with them. They’re treatment resistant. And that’s very sad. And those people should be properly looked after and they should be given the best quality of life. But for quite a few people if they have the right medication, medication that they agree with. If they have a care plan that includes medication that they agree with them, that doesn’t give them horrendous side effects, that they’re not going to drop off taking, then they will benefit from having helpful therapy from medication and from talking therapies. And I think that there always will be schizophrenia. I think that studies show that about 1% of every population in every culture throughout the whole of mankind will suffer from schizophrenia. And that won’t go away by avoiding the term schizophrenia. I think it might be helpful to abolish the name schizophrenia and to replace it with something like perception disorder which I think is a term they’ve used in Holland and it would be helpful to abolish the term schizophrenia in the same way that manic depression has been abolished and mental subnormality has been abolished.
Sometimes there were significant consequences of receiving a diagnosis, including what benefits people could receive and if they were allowed to work in particular jobs e.g. with children.
Last reviewed July 2017.
Last updated April 2014.
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