A psychiatrist or a GP usually diagnoses a mental health condition. This is done by asking a patient questions (‘taking a medical history’), observing them, and comparing what they find to a ‘diagnostic criteria’. It is possible that an underlying physical condition can cause mental health problems like depression, or that depression can present with physical symptoms so other kinds of hospital doctors may be involved in diagnosis too. Getting a diagnosis was not a straightforward process for many of the people we spoke to. Indeed, some had never received an official diagnosis. Tracy said that even though she knew she had postnatal depression, no one told her this diagnosis, yet they gave her ECT. Sometimes people couldn’t really recall being told their diagnosis, and only found out that they had been diagnosed by reading their medical notes.
Most people had had a diagnosis of depression – including major depression, psychotic depression, bipolar disorder or postnatal depression. Many had received other diagnoses too such as anxiety, OCD (obsessive compulsive disorder), PTSD (post-traumatic stress disorder), personality disorders and schizophrenia.
Yvonne had had various diagnoses. She says she’s more “clued up” now and finds she’s able to understand how people work.
Yvonne had had various diagnoses. She says she’s more “clued up” now and finds she’s able to understand how people work.
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think… my diagnosis just now more than of a personality disorder and chronic post-traumatic stress. I have had a few diagnoses over the years, and the first original one was severe clinical depression. But these words did na mean anything to me then, you know, they were just, whether it was because I was so ill, or I wasn’t able to it in, or just because I wasn’t familiar with the terms. I don’t know.
Nowadays I’m more clued up, but I don’t think I would be clued up if I hadn’t gone through it. I think I would have still been one of these people that you know, just didn’t understand. So it makes me glad I’ve gone through it, because it makes me more tolerant of people. It makes me understand how people work better but my current diagnosis is chronic post-traumatic stress.
Dafydd thought his wife had minor episodes of depression through her life, but it got much worse after she retired. Eventually she was diagnosed with clinical depression.
Dafydd thought his wife had minor episodes of depression through her life, but it got much worse after she retired. Eventually she was diagnosed with clinical depression.
Age at interview: 79
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I’m naturally involved because my wife has been ill and as far as I was concerned she was low for many years although she reckon that s she had little episodes from time to time which I regarded as outbreaks of like premenstrual tension but she reckons they were not all but she did not become clinically ill until after she’d retired. And I understand that people with problems with depression may well have onset in later life and so that really she’s been retired now for about 15 years but I think she’s been clinically ill really mostly for about ten years but you can check the date in her statement. And so naturally as I live with her I am very concerned about her wellbeing and it affects us both of course.
And when she became severely depressed of course we had to try and get some help through the local health service and initially through the GP who referred her to the local psychiatric department where she was interviewed and then it progressed from there. She seemed to get progressively worse and diagnosed with severe clinical depression but for no obvious reason and it seemed to have come on without any incidence apparently to spark it off it was not as the result of anything happening but the from my point of view I couldn’t explain what I’d said or what I’d done in order to trigger it off but it could be quite explosive reactions and obviously part of the illness.
Receiving a diagnosis
Receiving a diagnosis could be a relief if people felt the label helped things “fall into place”, or gave their particular kind of suffering better recognition. It took some time for Tristan’s wife to be diagnosed with psychosis as she mainly showed symptoms of depression. After his wife was diagnosed with psychosis, he felt that he could start to understand what was happening. Sheila found it useful when the psychiatrists explained her husband’s OCD (obsessive compulsive disorder) and why it might cause him to want to kill himself (see for more ‘
Depression, psychosis and anxiety’). Having been told she was a disruptive adolescent, Catherine Y said her diagnosis of depression “undid that” and she felt better about herself, understanding that she wasn’t a disruptive person, and “wasn’t trying to do it on purpose”.
Although Cathy says labels aren’t always helpful, she found having a diagnosis could help her make sense of things she was going through.
Although Cathy says labels aren’t always helpful, she found having a diagnosis could help her make sense of things she was going through.
Age at interview: 49
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yes, I mean I was quite pleased when somebody told me what was wrong or what they thought was wrong. Because, I don’t know, there’s a, I, when you’re experiencing things that aren’t, well, you don’t feel are normal, it’s nice when somebody tells you why that might be happening. So although I, you know, am not a hundred per cent sure whether labels are helpful, having one then was, because I, you know, I knew what was happening then.
And what sort of experiences did it help you make sense of?
Well, I mean when somebody says you’re suffering from depression and anxiety, I mean it, these days it’s easy, you just Google it and find out all the information and all. But we didn’t have the Internet then. And I, I mean I’m sure we must have looked it up in books and things and sort of found out, you know, what it was all about and, and just making sense of how things were and explaining it all. But I mean over the years I’ve had many labels and some have been helpful and some haven’t.
Although Tania was initially diagnosed with depression she was later found to have ‘bipolar affective disorder’. For Tania, her diagnosis helped her understand why she could feel depression and joy at the same time.
Although Tania was initially diagnosed with depression she was later found to have ‘bipolar affective disorder’. For Tania, her diagnosis helped her understand why she could feel depression and joy at the same time.
Age at interview: 41
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
I talked to my family, and brother at that time was a psychiatrist. He’s a lot older than me and he was already a psychiatrist and I told him what was happening. I said, I can’t understand what’s going on. And then he said to me, “You know,” he said, “I think you might have depression” and I was actually really shocked, because I didn’t, I didn’t really know anything about it. But just it sounded, actually then, you know, it sounded quite frightening and I thought ‘what’s that?’ I knew it was an illness but I didn’t really know. And he urged me to go and see a doctor. And at that point my Mum actually told me that my Grandma had had very severe depression. That she’d had, in those days, what they called ‘a couple of breakdowns’. I knew nothing about it. I mean I don’t think anyone knew. She’d kept it secret and it was back in the kind of 50s, or 60s, or 40s, and they didn’t tell anyone. Only the immediate family knew. So I didn’t know anything that my Grandma had a history, but apparently she did and I went to the doctor and I told him what was happening to me and he asked me about family history and I said, “Well yes apparently my Grandma.” So yes, they thought that’s what it was, depression. And we tried, you know, he put me on some antidepressants, and. But it didn’t work, nothing worked and he tried various ones.
But it just got worse, everything got worse and I pretty soon, I started to think, it just came into my head, the idea of killing myself and then it wouldn’t go, and it just, I couldn’t stop thinking about it all the time. It just dominated every moment of my thinking
And yes, in hospital they couldn’t really work out what was going on because I didn’t show any of it on the surface at all. And, and there was nothing wrong in my life. I had a really lovely family, you know, I was, I was, I had everything really. I had a great supportive family. I had a lovely boyfriend. You know, done well academically, was at the university I wanted to go to, was doing really well in my studies, had loads of friends, I just had everything really going for me. And I’d always had a really happy go lucky personality as well. I just was, and even when I was depressed, I smiled. They called it ‘smiling depression’.
I now know that I have bipolar disorder and actually it was a mixed state when you experience depression and elation at the same time, but at the time, no one, it’s one of the things which is never, it takes years before people diagnose that because it’s something that really confuses people, because you feel full of energy and you maybe seem on the surface quite happy and almost elated but you’re suicidally depressed at the same time.
Yet getting a diagnosis often took a long time, and sometimes health professionals had different opinions about the correct diagnosis, and the right treatment. Sometimes medical professionals gave treatments even though there were many different or uncertain diagnoses. Beattie was diagnosed with schizophrenia and later that was changed to bipolar. She didn’t mind being given a diagnosis, although she doesn’t think much of psychiatric treatments she received.
It was some time before Catherine Y received a diagnosis of ‘depression’. At first she was relieved, but then she didn’t know what it meant, or what treatment might be available.
It was some time before Catherine Y received a diagnosis of ‘depression’. At first she was relieved, but then she didn’t know what it meant, or what treatment might be available.
Age at interview: 41
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
And before I was due to take my Highers I’d taken another overdose and ended up in the, our local psychiatric hospital on an adult ward for about six weeks before one of the staff came from a young people’s unit that was on the same site as the hospital and came to do an assessment and said, “Would you like to come and stay at the young people’s unit and we can look in more depth at what’s going on?” At that time there was no mention of, still no kind of mention of the na-, the term depression. It was, some of the doctors had mentioned, you know, “adolescent crisis” or, or just something that would maybe peter out and would sort itself out. But I went to the young people’s unit. And they have a lot of questionnaires that you fill in that they’re able to ascertain kind of really how you, you’re feeling, because communication can still be difficult when you’re younger. And then they officially said that, that I did have depression and maybe had done so for a couple of years. So at that point there was some kind of relief there, but also I didn’t really understand a lot about it and I didn’t really understand how the treatment or support that would be put in place would help.
Although Sunil was bipolar, he also had an under active thyroid, a possible physical cause of depression. He was given lithium for the bipolar, but thought this interfered with his thyroid problem.
Although Sunil was bipolar, he also had an under active thyroid, a possible physical cause of depression. He was given lithium for the bipolar, but thought this interfered with his thyroid problem.
Age at interview: 56
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
And I personally think retrospectively that I was grossly mismanaged. And although the medics looking after me at that time may have realised that I suffer from bipolar illness or a condition which in those days used to be called “manic depression” which is the old name for bipolar. I was never actually explicitly told that you have got bipolar illness. In fact, I was actually treated with…no, even before being treated with lithium, they did some baseline blood tests which they would do on anybody with severe depression, and one of the things you want to make sure that there’s no physical underlying cause for it. And one of the things they check for is whether you’ve got an under active thyroid gland and the do a blood test called the TSH which is basically a thyroid stimulating hormone. If you’ve got a very under active thyroid gland which is a gland found in the neck, then your TSH level will be very high, because the pituitary gland in the brain will be raising the TSH level to try and stimulate the thyroid gland to produce the thyroid hormone. So I had a sky high TSH level, one of the highest they had ever come across, of over a 1,000 when the normal level is like single, single digits.
So I was put on thyroxine, replacement therapy. I was given the thyroxine hormone as a treatment. But despite that, they actually also tried me for a period on a drug called lithium. Which is used to stabilise the mood in people with bipolar disorder. And, I think one of the main, one of the very well-known side effects of lithium is interference with the thyroid gland. And, in retrospect I feel that keeping in mind they had already discovered that I had a severely under active thyroid gland, the one drug that they should not have given me is lithium. But I was given lithium.
Having a number of psychiatric labels could be confusing. Matt described his wife’s illness as “kind of depression and psychosis and anxiety and kind of a whole mess of things”. Suzanne wanted reassurance that she would get well again and was scared when they were testing her for epilepsy because she thought “oh there’s even more stuff wrong with me”.
Some found receiving a diagnosis was upsetting, particularly when they felt the diagnosis was serious or something that did not represent what they were experiencing. When David Y first heard that his partner had schizophrenia, he had held stereotyped views that people with schizophrenia were very violent. This didn’t fit with his wife’s behaviour, and the medical professionals explained it could actually mean her being very withdrawn.
Some were worried about how others would react to labels. When a medical professional announced at a child protection meeting that Cathy had schizophrenia, she said her in-laws were “absolutely horrified.” They said she shouldn’t be allowed to look after her son. Kathleen, who had trained as a GP, was eventually diagnosed with depression, but she herself felt “ashamed of being ill”.
Jenny found it hard being given a label of ‘Personality disorder’. She sees psychiatry as inconsistent because the treatments she received don’t relate to that diagnosis.
Jenny found it hard being given a label of ‘Personality disorder’. She sees psychiatry as inconsistent because the treatments she received don’t relate to that diagnosis.
Age at interview: 56
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
And in my experience actually trying to understand someone’s story and to not pathologise them is much more constructive than giving them a label and then treating the label. And I have had several different psychiatric diagnoses over, over the years. But was, amongst the other things that went wrong during 2006 and 2007 was being told that my psychiatric label was of Personality Disorder and that that should make me feel better. Because one of the problems with losing my job was that I was considered just to be a dysfunctional oddball, and so for psychiatry to label me as a dysfunctional oddball was very hard and still is very hard, for that still is my working diagnosis. And it, and it seems to me that the practice of psychiatry is riven with inconsistencies, because actually neither ECT nor antidepressants are good treatments for personality disorder and yet those have been the mainstays of an approach to my care.
People who had been diagnosed several decades ago were not always told directly about their diagnosis. Most felt that mental health problems were less understood then. When Helen had an unwanted baby that was put up for adoption in the 1970s, she suffered from postpartum psychosis. In response, her family married her off, and a doctor advised her to have another baby because they thought she wasn’t coping.
Albert wasn’t told he was schizophrenic and only found out when he was asked to sign a paper and saw the diagnosis there.
Albert wasn’t told he was schizophrenic and only found out when he was asked to sign a paper and saw the diagnosis there.
Age at interview: 73
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
They never even told me when I was a patient, what was wrong. They never told me I had bipolar, or schizophrenia, or when like. I went down to the Rehabilitation Centre in [Place], in 1962, [and] there was this form they gave me and ha, well [it] says, [they] threw this sheet of paper and said “you’d better sign that”. So I saw this bit on the piece of paper and it said ‘catatonic schizophrenic’. I said “what’s that”? They said “that’s you!” So, I looked it up in the dictionary, when I got home, and it said ‘ever increasing deep depressions’. So, I don’t know where they got that one from. But then again, their perceptions and mine.
Finding out more
Sometimes people we spoke to were very unwell when they were first diagnosed with a mental health condition. Because of this, it could be difficult to properly take in information about a diagnosis. People had often come across the terms ‘depression’ or ‘anxiety’ in general conversation before their diagnosis, but had inaccurate or little understanding of what the terms meant. Finding out more about a diagnosis was important to some people, as they wanted to know what they were likely to experience, what treatments were available, how to help themselves, and the extent to which they could hope to get better.
When Suzanne was told she had ‘psychotic depression’ she was surprised. She read up about it and found out the illness is episodic (happening at infrequent times) and now counts herself lucky.
When Suzanne was told she had ‘psychotic depression’ she was surprised. She read up about it and found out the illness is episodic (happening at infrequent times) and now counts herself lucky.
HIDE TEXT
PRINT TRANSCRIPT
And did you have any discussion at all that you can remember about your diagnosis or did you care?
There was no discussion about it. I don’t know, patient appointment I asked what my diagnosis was, and I was told it in two words and I was so surprised that I couldn’t think of any questions to ask and I wasn’t prompted to ask any either. Its psychotic depression, and I thought does this mean I’m some kind of psychotic person who is going to be completely nuts for the rest of their life. That was my first thought upon hearing those words. And yes, …
Did you get any explanation past those two words that you were given?
No, no, I didn’t. No… and from the reading I’ve done now, I understand where the diagnosis has come from. From the symptoms that I had of being very low, and the kind of paranoia that I was having at the time and yes. Like it does make sense to me now, when I look back on it.
Yes, but it’s very much an episodic illness, with long periods of being well in between periods of illness, so I kind of count myself lucky in some ways. Yes.
Carers and family and diagnosis
Some carers felt they had been “side lined” and not given enough relevant information to understand the diagnosis. When Carys’s daughter was diagnosed with a serious mental health condition twenty years ago, she got out books from the library to learn more. However, the books weren’t written for lay people and were hard to understand (for more see ‘
Caring for someone having ECT’).
Steve googled his wife’s condition and found that things listed for ‘the signs of depression’ were similar to his wife’s illness. He found internet forums for carers interesting.
Steve googled his wife’s condition and found that things listed for ‘the signs of depression’ were similar to his wife’s illness. He found internet forums for carers interesting.
Age at interview: 60
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I looked a few years ago now for, I think I Googled bipolar, and then to talk about, to try and find information sites for carers. I don’t think I used the word carers. I just thought bipolar family and friends sort of keywords like that, just to sort of get information. The signs of depression. What to look out for. All of that you see I had never been told. I know you shouldn’t pigeon hole people into things but there were certain things on this list to look out for which yes, I could see those were coming up in my wife’s illness, which I’d never really seen before in terms of these are the types of things to, you know, this person will suffer with, and also that went on to various sites, where forums and chat lines where people were talking about their experience as a carer for their partner who’d been experiencing this illness and some of them dealt with ECT, so that was interesting. They weren’t video clips or audio. They were just written in as I said sort of forums really, just people talking about it. So that was, that was just me sort of proactively looking on the web, and you know, the web in something I’ve only started using in the last ten years, so before then there was nothing. I suppose there were books and pamphlets but I was never given anything.
Last reviewed January 2018.
Copyright © 2024 University of Oxford. All rights reserved.
