Experiences of 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.
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.
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.
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.
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’).
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.
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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