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…

Age at interview 37

Gender Male

Age at diagnosis 37

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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…

Age at interview 36

Gender Male

Age at diagnosis 30

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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…

Age at interview 50

Gender Male

Age at diagnosis 20

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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.

Age at interview 38

Gender Female

Age at diagnosis 31

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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…

Age at interview 31

Gender Female

Age at diagnosis 17

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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…

Age at interview 23

Gender Male

Age at diagnosis 20

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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…

Age at interview 49

Gender Male

Age at diagnosis 15

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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.

Onset of mental health problems

Here, people talk about when their mental health problems first began. Some people first began to experience mental health problems as teenagers, a few when...

Hallucinations & delusions

Here, people talk about what it's like to experience symptoms associated with schizophrenia, schizo-affective disorder and psychosis. Two types of symptoms are associated with schizophrenia:...