Many of the people we spoke to wanted to find out more information about mental health, or their diagnosis, so that they could better understand what they were going through. People got information from a wide range of sources including: books, the internet, leaflets, films, doctors, mental health organisations, support groups, and other people with similar experiences. Especially at first, booklets and leaflets produced by the NHS or mental health charities were helpful sources of information. However, over time people wanted to know more and accessed other kinds of sources e.g. the internet and books. It had taken most of them time to find the sources that were right for them.
Many got their information from leaflets produced by organisations such as Mind, Rethink, or the Scottish Association for Mental Health. It was often through such leaflets that people learnt more about mental health and their own diagnosis.
Stuart describes the shock he felt when he was first diagnosed with schizophrenia.
Stuart describes the shock he felt when he was first diagnosed with schizophrenia.
Age at interview: 45
Sex: Male
Age at diagnosis: 31
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One of my immediate responses to my diagnosis was, “Oh good, when can I go back to work?” You know, I thought they were gonna sort me out and it meant I could go back to work, and get on with life. And I was just told that I had to accept it was likely I’d never work again in life, and I had to accept it was likely I’d never get over the schizophrenia and that was, that shocked me. You know, there was nothing positive given to me about the diagnosis. I expected, right, they’re going to do something, I’m going to have medication. Oh I didn’t actually realise medication at the time. I didn’t … before I was diagnosed I’d been on Prozac for some years. And other medication I couldn’t remember but, you know, I had no understanding about antipsychotic medication or the medication that’s given for schizophrenia, so it was sort of relief, you know, that I could. I remember looking down the list and I think this list was provided, the leaflet was provided by the charity Rethink. And I looked down the list of all the symptoms of schizophrenia and I could just tick every box. You know, and I recognised it.
People also gathered information about housing and benefits from other types of leaflets, such as those in job centres. However, over time people wanted more detailed information, including about people’s experiences and different ways of coping with mental distress.
People found information in many other places, such as the local library or women’s magazines. A few mentioned self-help books as a good way of reading about techniques and strategies such as meditation that could help them cope with experiences (see
‘Strategies for everyday coping’).
Tom's psychiatrist recommended the book Coping with Schizophrenia'.
Tom's psychiatrist recommended the book Coping with Schizophrenia'.
Age at interview: 39
Sex: Male
Age at diagnosis: 21
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Well, my first psychiatrist, who I came into contact with shortly after I was diagnosed, he recommended a book just, ‘Coping with Schizophrenia’.So through... On the internet and just through books and I’ve just that I’ve just been and found in book shops and that kind of thing.
Can you tell me about some of the material you’ve come across?
Yeah, there’s a book a book I think it’s called, Coping with Schizophrenia, which was out in the early nineties so I read that. Just books about psychiatry as well as psychology.With chapters on schizophrenia and that kind of thing. I forget what it’s called. It was a pelican book.And I read that and just articles online and Wikipedia and that kind of thing.And also something about the history of it and the more, you know, and the history of psychology and things like that, which probably not that helpful for coping with schizophrenia or living with it but just more an interesting to me.
I was going to say how did you feel reading this material?
On the whole, grateful that I didn’t live in the past. Grateful that I I’m grateful that I wasn’t ill the eighteenth or the nineteenth centuries. Or before then grateful, you know, because it was pretty horrendous.And it was until, you know, the nineteen seventies or the eighties even. So grateful that I went, that I that I was ill at the time I was.
When you read material about schizophrenia, do you identify with it?
Yeah, yeah. Also it, you know, there was a lot I read, a lot that they, that I read that I wasn’t told about.That they didn’t they didn’t really tell me all that much about it, you know. They diagnosed me and there wasn’t that, you know, there wasn’t they didn’t they didn’t let me know much about it or even, you know, even they even some of the negative symptoms, you know. Maybe they talked a little bit about lack of concentration and so on but the so called negative symptoms rather than the positive the positive symptoms.Being the voices and delusions but the negative symptoms being the apathy, lack of will-power, lack of energy, and even lack of... lack of the ability to talk very well.They didn’t tell me tell me much about those and I and I that was that was just up to me, just sort of left to me to read about, to find it. You know, and to get to get books from and find it for myself. So they weren’t that wasn’t very good. That wasn’t, you know, that that was that was that that was a bit of lack I found in the in the service.
Well, what did you think about some of the quality of the information that you found on the internet?
On the internet, I only I’ve [pause 5 seconds] fairly good. I mean Wikipedia and things like that, you know, and fairly good. You know, I like Wikipedia. I think it’s very good so but it was it tended to be factual and less about coping with schizophrenia.And more about, you know, what it is and what the symptoms are but less about how, if you’re suffering from the illness how to cope with it.How to best cope with it and how to live with it and stuff like that.
Graham learnt from others and through fictional and real accounts of personal experiences.
Graham learnt from others and through fictional and real accounts of personal experiences.
Age at interview: 47
Sex: Male
Age at diagnosis: 22
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I feel at my most easy when I meet someone who I realise has at some stage or still is going through some of the experiences I’ve been through. Or at least has some knowledge of what mental ill health is. It feels like there’s a connection. And you can share all sorts of ideas then and learn from each other. Even if that learning is not conventional learning it gives you all sorts of sensors of your own self-identity and self-worth. And that’s how I find things out. I don’t tend to go to leaflets. It’s strange because we’re the sort of people who would do leaflets and things but books… I quite like books, which give either fictional or real accounts of what people have been through. I find those very interesting.
But otherwise I don’t do a lot. I’m not caught on self-help and self-awareness and, no I don’t seek to be a person whose all about recovery. I just live my life and I live my life
Pete describes his long journey trying to make sense out of his confusing experiences.
Pete describes his long journey trying to make sense out of his confusing experiences.
Age at interview: 48
Sex: Male
Age at diagnosis: 30
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I was trying to make sense of all these things and, I had nine people working for me on the shop floor when I had me business, and I hadn’t seen one of them since me first admission so I thought ‘well perhaps they’re me disciples who will betrayed me had this, I’d had this out of body experience so I’d died and resurrected I’d been on the acute ward so I’ve been to Hell and back if it’s, I’ve got to be Jesus Christ it can’t be any other explanation and we always said you’re not a fully paid up member of the Psychotic Society unless you’d been Jesus so [laughs] I thought with this new found information ‘what shall I do?’ I thought ‘well I’ll go to Sheffield Cathedral, I’ll go and show myself’. So I made me way there in me scruffy state, but as I got to the big wooden doors I thought ‘oh crikey they crucified Christ’ ‘I must have a last supper’. So I went to McDonalds and got this Sausage and Egg McMuffin, contemplating me crucifixion, then [laughs] then, I went back to Cross and I went in and a man stopped me and he says, “What, what do you want?” I said, “Well I’ve come to see the main man, I’ve come to show myself.” He chatted to me for about ten minutes, he didn’t really listen to what I was saying and then he left me, now I’ve never been in the Cathedral since, there was a pulpit facing the more, main auditorium, but there’s a pulpit side on, and this vicar was doing this sermon in the side on pulpit to some old age pensioners. So I seized me chance I ran down the cathedral they never saw me coming and I jumped in the pulpit at the side of him, and he actually spun round and went, “Christ Almighty.”.I thought ‘well fantastic he’s recognised me’ ‘he saw through’ you know? [laughs]. And he had to stop the sermon and he took me in this back room and he said, “Now what are you playing at?” And I swore, “I thought you recognised me.” And we had this long drawn-out conversation which finished up with him saying, “Have you ever been in a mental hospital?” I said, “Well a few times what’s that got to do with anything like?” You know? This, I think this was February or something like that, he said, “I’m starting a group for people with Mental Health problems in September would you like to come?” And he took me details but I never heard from him again like so. But I was quite disillusioned I wasn’t the Messiah I thought I’d got it all worked out at that point [laughs]. But the groups in, again involved more with the network because when I set up this group with [name] I was still having problems with me own experience and, I remembered the network and I managed to track them down to Manchester, and I spoke to this lady on the telephone, and she says, “Go and buy a book called Accepting Voices by Marius Romme and Sandra Escher.” And I read this book, it took me a long time because of the concentration problems, but it, I was so inspired it was an amazing thing and I suddenly thought ‘the system’s wrong’ the system is so wrong on this, and I then invited the network to Sheffield, I said, “Will you come and do a workshop? And we’ll raise some money, we’ll raise our profile.” And I was talking to the main speaker at the end, now all they knew about me I was a voice hearer he didn’t know anything else and I said to him, “I like the way you work with voices but you’re talking about voices with identities, mine have no identity they’re demonic.” “And they have no agenda either.” And he just looked up and he looked me straight in the face and he said, “Peter address the demons of your past.” And the demons of my past was my abuser and as a grown man when saw I was still running away. So I realised eventually I got to address these demons and, I saw her one Saturday afternoon walking down the road and me first instinct was to run away again, but I didn’t, I kept walking, but I kept eye contact all the way, and as I got close to her she looked at the floor, she wouldn’t look me in the face and I suddenly thought ‘perhaps I could still get this woman in trouble” but just by getting her to look away had altered the power difference she didn’t have a hold over me.
Gary had read ‘An Unquiet Mind’ by Kay Redfield Jamison and strongly identified with it. Before the days of the internet, people had relied more upon other sources, including support groups, GPs and psychiatrists. Margaret felt that she had received the most useful information from a spiritualist church. Many people who had been diagnosed in the last few years had found a good amount of information on the internet. Arwen said at first information on the Internet had helped, but later it seemed a bit ‘basic’ and ‘condescending’. However, others found internet sites highly useful. Some people had tried using chat rooms or Facebook as a way of talking about their experiences with some degree of anonymity. However Arwen had been abused on an internet site when she disclosed that she had been diagnosed with schizophrenia.
Some people had also read about religious interpretations of experiences, particularly Buddhism. Others chose to educate themselves in other ways, through studying on a course or reading about mental health.
Education helped David to understand why he felt as he did, and how the world around him worked.
Education helped David to understand why he felt as he did, and how the world around him worked.
Age at interview: 31
Sex: Male
Age at diagnosis: 17
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Going into education has really helped. It’s getting the support within my college and university may not be the best way forward and stuff because sometimes it’s pointless and it’s good. It’s definitely learning and be able to see things from different perspectives. Training courses as well. And at the moment doing NLP and I love it. It’s brilliant. It’s given me a whole new perspective and things. It’s like doing the Peer Support Worker training, mentor training, that’s helped me a lot as well. It’s given me a different perspective on things. And doing my degree in Applied Psychology gave me a huge perspective on both myself and people around me and the people in the world and I enjoyed things like sociology in that as well. It’s like human sciences. So they’re about people and when you can start looking at how people work and how things are constructed like society and how views and beliefs are constructive you can take a slightly different approach on where you are in yourself and may be come to understand why people don’t understand or may be they’re afraid and the reasons why they sort of distance themselves, and also some reasons why you might end up feeling the way you do feel.
David became involved in research produced by service users and found more information by going to conferences about issues that affect service users.
Many learnt more about their diagnosis and medication from health professionals such as their GP, psychiatrist or mental health nurse. Others got helpful information (e.g. positive ways to cope) from service users in hospital wards or in support groups (for more see
‘Support groups, service user groups and charities’). Some people got their information from therapists outside the NHS who practised different forms of medicine or healing.
Naveed regularly consults a herbalist about his health. He receives advice about his physical and...
Naveed regularly consults a herbalist about his health. He receives advice about his physical and...
Age at interview: 42
Sex: Male
Age at diagnosis: 15
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I mean I see a herbalist now right. He’s like three into one, he’s a fully qualified doctor, he’s herbalist and he’s also an imam. And, I’ve asked him, you know, “Am I possessed?” And he goes, “You’re not.” And I said, “I’ve been to hell.” And he goes, “The eyes give it away. Those are the first things to tell if someone’s possessed or jadu [black magic] has been done… is the eyes you know, know.” And he goes, “You’re not possessed.” He goes, “You’re just ill.” He goes, “You’ve got a weak mind, you know.” And he goes, “You’re just ill.” You know, he goes, “You’re not possessed.” So … I mean I like the guy. I’ve got a lot of time for him. I respect him and I go and see him quite regularly. Because I get chest pains and all, and I start panicking with that. It’s like I’m having a heart attack or something like that. But they’re saying, it’s like acid dry and its like gastro… is it gastroenteritis they call it, whatever.
Yes. Sometime like that. So I see him quite a bit. Like, you know, and you know, I respect him when he says, you know, “You’re not mad.” What’s the name. You’re not possessed, it’s just you’ve got a illness.” You know, so…
So what treatment does he give you?
He does like a.., like he holds his scriptures out and then sort of blows on me like, and this tabiz you know. It’s from his hands like you know, so, he said, “You know, this should help you keep away all the evil spirits and this, that and the other, you know. Because you’re not possessed. You haven’t any rogue spirits.” He said, “No jadu no jinns, and this right is hoping we’ll keep them away from you, and you’re just ill like.” You know, so …
And do you know what script he put in the tabiz?
No. I did say to him, to just make sure the evil spirits stay away from me and jadus and jinns and those kind of things stay away from me, and he said okay. So he said, he goes, “It’s going to be really special, once, it’s going to take me about two weeks to do.” So it took him about two weeks to do it for me, you know.
A couple of people had consulted spiritual guides or mediums to learn more about the spiritual world (see
‘Spirituality and religion’ for further information).
Some people had begun to put together information about their experiences and thoughts for others to use. Dolly, for example, wrote a book about her experiences called “The World is Full of Laughter”. Ron has written several books and handbooks for those working with voices and working towards recovery.
Ron describes learning to live with his own voices, and how this became the start of a...
Ron describes learning to live with his own voices, and how this became the start of a...
Age at interview: 51
Sex: Male
Age at diagnosis: 23
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I started doing things with people like Terry McLaughlin, with and Sandra Escher, where what I started doing with the voices was to start breaking them down and, and even on my own I started looking at the different characteristics of voices, and people I think sometimes wonder why I manage to do that and I think it’s because, even though I wasn’t involved in the church for years and years and years, I still remember that one of the things in church that we did was that we looked at the characteristics of God and that each part of the Trinity, if you believe in the Trinity, had different characteristics and so I started using that stuff on my voices, that my voices had different characteristics that some were male, some were female, some were positive, some were negative, some were abusive, some were non-abusive, some were advisory, some were commanding and I started looking at those characteristics and I started breaking them down, and that formulated I guess the start of the ‘Working with Voices’ workbook, was really started then, and, you know, and it didn’t come out till much later but that’s when it really started. And I guess I started it on myself
For more information about approaches to recovery, see ‘Recovery’.
Last reviewed July 2017.
Last updated April 2014.
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