Experience of receiving a diagnosis

Usually a diagnosis of a severe mental health problem will be given by a GP or psychiatrist after they have made an assessment. This includes asking questions, observing the person and comparing what they see and hear to criteria set for different categories of mental illnesses. Getting a diagnosis can be a difficult process and sometimes symptoms of mental health problems are unclear or appear less or more severe than they are.

Some people we spoke to were not diagnosed for a long time after they first became unwell. Other people described receiving many different diagnoses over their lifetime.

The diagnoses people had received included bipolar disorder I or II (or the older term manic depression), schizophrenia, schizoaffective disorder, reactive psychosis, depression, generalised anxiety disorder, bulimia nervosa, eating disorder NOS, obsessive compulsive disorder (OCD), borderline personality disorder, post-traumatic stress disorder, and gender dysphoria.

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Receiving a diagnosis
What diagnosis meant for people
Multiple diagnoses

When Evan was experiencing paranoia in the 1970s he went to see several GPs who said it was ‘just stress’. It was only after he admitted himself to hospital that he was diagnosed with schizophrenia.

Receiving a diagnosis

Some people we spoke to were diagnosed a long time ago (up to 37 years ago) while others were only recently diagnosed (as little as one year ago) and a few couldn’t remember exactly at what point they were given a diagnosis. While it could be difficult to recall the moment when the diagnosis was given, a few remembered the conversation in detail. Some of the people we spoke to described not being told about their diagnosis by their treating doctors when it was first written in their notes, and only became aware of it sometimes after it was made.

The first time Alice knew about her diagnosis was when she was discharged from hospital and saw it written on the discharge sheet.

It was not until later in his life that Simon was told of his diagnosis. He was not allowed to see his files and had to apply to see them under the Freedom of Information Act.

The way in which the diagnosis was delivered was important to people. Ann described how the psychiatrist ‘blurted it out’, telling her that she ‘probably had schizophrenia’. Ann said she has always experienced some ‘insensitivity’ on the part of medical practitioners when advised of a new diagnosis. When Cindy was trying to get help for a skin condition on her hand she was told by a psychiatrist, ‘You’re delusional’. In relation to the diagnosis of schizophrenia that she received, Cindy reflected, ‘I don’t know whether it’s something they make up sometimes’.

Susana described how she was advised that she had had a nervous breakdown in front of a family member whom she did not get along with very well. She found this embarrassing.

For others, it was hard to understand what exactly the diagnosis was. Allen was diagnosed with bipolar disorder ‘for a while’ but is now told he is ‘probably schizoaffective’ and in remission. He doesn’t know ‘what that means’ because for him mental health is a ‘constant thing’ and requires constant management. Sarah’s psychiatrist diagnosed her with schizoaffective disorder, but when Sarah looked it up and told her psychiatrist that it didn’t match her symptoms, the psychiatrist said that was because what she had was ‘not a full on… psychosis’. She now thinks doctors don’t ‘really know enough’ about psychosis.

After the diagnosis, some people found it useful to read up and do their own research on mental health and illness, which included looking for information on trauma and hearing voices (see Searching for information).

What diagnosis meant for people

Some people felt a sense of relief on receiving a diagnosis. For Lisa, the diagnostic label ‘really clicked’ with her. When Helen found out that her diagnosis of manic depression meant she ‘was bipolar’, things began ‘falling into place’. When Carlo read a book called Living with Bipolar, he said that it was the first time that he felt someone else ‘understood what was going on’.

For others though, receiving a diagnosis was distressing. Jenny said that it was ‘scary being labelled schizophrenic’. After being diagnosed with bipolar disorder, Carlo said that it was ‘frightening for [him] to accept’.

Charlie described how receiving a diagnosis of schizophrenia in hospital was a frightening experience because her elder brother had recieved ‘a similar diagnosis’.

Luana recalled that she was scared when she received her diagnosis because she thought people with schizophrenia were ‘away with the fairies’ and this didn’t match her own experience.

While most people didn’t question their diagnosis, a few had received a diagnosis they felt was wrong, or that they refused to accept. It was frustrating for some when the diagnosis didn’t seem to fit with their experience of being unwell. Although Brendan was first diagnosed with bipolar disorder he didn’t feel it was ‘a good fit’ and still questions it. Simon felt he was given ‘an incorrect’ diagnosis of borderline personality disorder, along with other diagnoses, which were on his record for a long time.

Tanai ‘hated’ being diagnosed with borderline personality disorder. She knew other people with that diagnosis and had tried to ‘shut down’ any ‘hallmarks of borderline’ in herself.

For some, the diagnosis seemed to be a way for the doctor to understand what they were experiencing. Ann and David both said that they didn’t ‘really care’ what ‘label’ they were given as long as the best care was available. Others felt that a diagnosis was a means of getting the treatment that would make their illness go away, or help them to feel better.

When Brendan was given his initial diagnosis of bipolar disorder he thought it would mean there would be treatment and a way forward. Now he has had to accept ‘maybe this is always going to be how life is’.

A few talked about how their family responded to a diagnosis. Carlo felt it was difficult for his now ex-wife to ‘accept or understand’ his diagnosis. Some also reflected on how family had responded when other relatives were diagnosed with mental illness (see Discrimination and social responses to mental health problems).

Multiple diagnoses

Many people were given different diagnoses over their lifetime, which could be confusing. Ann felt as though she had received ‘every diagnosis under the sun’.

A few people felt that a new diagnosis resulted in reduced care. Brendan was diagnosed with bipolar II disorder at the age of 25 and then in his late 30s ‘they came up with’ a diagnosis of depression. He felt that the new diagnosis was given so he ‘didn’t have to be case managed’, but felt that the diagnosis of depression ‘came to nothing’ in terms of his care.

Anna was diagnosed first with major depression, but was later given a diagnosis of borderline personality disorder. More recently, she described how the diagnosis was changed to ‘rapid cycling bipolar’. She said having ‘quite a lot of diagnoses’ isn’t unusual. Some people she has spoken to have said that what diagnosis people receive is related to ‘whatever’s in trend’ at that point in time. Others seemed to accept that their diagnosis had changed over the course of their life.

When Paddy was 27 his previous diagnosis of schizophrenia (given when he was 14) was changed to schizoaffective disorder. He thought that better treatment would be available with the new diagnosis.

Despite receiving multiple diagnoses, some people felt that they experienced ‘symptoms’ that were not accounted for.

Although she has had many diagnoses over her lifetime, Ann said her psychiatrist has now ‘settled’ on bipolar disorder, but there is still a ‘big question mark’ as to why she hears voices.