Psychosis
Diagnosis of psychosis
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...
Tom was diagnosed with schizophrenia after spending time in a day centre supervised by...
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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?
Pete was told by a consultant that he was a chronic schizophrenic' and that he would never work...
Pete was told by a consultant that he was a chronic schizophrenic' and that he would never work...
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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...
Rachel lost the plot', was found by her neighbours, and ended back in hospital where she was...
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Jenni didn't like the first doctor who gave her a diagnosis of schizophrenia and thought he might...
Jenni didn't like the first doctor who gave her a diagnosis of schizophrenia and thought he might...
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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?
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.
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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 every changed?
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...
David was given a range of different diagnoses over the years and people have disagreed about...
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Rachel thinks it's important to get the right diagnosis and found that her original diagnosis of...
Rachel thinks it's important to get the right diagnosis and found that her original diagnosis of...
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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...
William talks about his confusion when he received a diagnosis of intermittent psychosis when he...
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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.
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...
Rachel found that she had to accept her diagnosis and thinks it is important that people ask for...
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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’).
Graham used to think diagnosis was helpful as it was something tangible, but he now feels...
Graham used to think diagnosis was helpful as it was something tangible, but he now feels...
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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...
Andrew thinks that by abolishing the term schizophrenia' you won't get rid of delusions or...
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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.
Last reviewed July 2017.
Last updated April 2014.
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