Psychosis
Sources of information
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.
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’).
Toms psychiatrist recommended the book Coping with Schizophrenia.
Toms psychiatrist recommended the book Coping with Schizophrenia.
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?
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.
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.
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.
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...
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Naveed regularly consults a herbalist about his health. He receives advice about his physical and...
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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...
For more information about approaches to recovery, see ‘Recovery’.
Last reviewed July 2017.
Last updated April 2014.
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