Messages to others about psychosis

People who had experienced severe mental distress wanted to pass on what they had learned to people who may be experiencing similar problems. Looking back over their experiences, many offered advice that they wished they had received themselves. Some people we talked to also worked to help improve services for others (see ‘Work and education’). Many people felt hopeful about the future and wanted to communicate this hope to others. Even those who felt less hopeful found better ways of coping with severe difficulties, and said that it was possible to manage their lifestyles and their mental health (see ‘Recovery‘).

Advice to others

Many looked back on their difficulties where they had felt scared, traumatised and hopeless. They wanted to tell people that there is hope, and that people could do things to help themselves feel better. People we spoke to wanted to inspire others to keep going through difficult times and to continue with their hopes and ambitions for the future.
Whilst some felt that accepting a diagnosis was the best thing to do, others recommended people not to take their diagnosis too seriously, or to be defined by it. Arwen said whatever your diagnosis keep fighting.

Dolly thinks that having a diagnosis of schizophrenia shouldn’t affect your dreams.

Age at interview 39

Gender Female

Age at diagnosis 22

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I would say to them, I know it’s really frightening at the moment for you, and you don’t know what’s happening and you know, and it’s affecting everything in your life, you know, the way your family are with you. You know, you’re you know what you want to do with your life. It affects everything. And it, I want, basically what I want to say is that don’t stop having your dreams basically, because if, you know, well what I basically want to say is, it’s going to be hard, your road is harder than it is, you know, for everyone else. But you know, you can still travel to wherever you want to go. it’s just, it’s going to be harder. And they’ll be times you feel like giving up, but you should never give up hope, because you know, I was told that I would end up in Broadmoor or dead, and if I believed that, I would, I would have ended up in Broadmoor or dead, but I chose to believe that I can make something of my life, and this, this, you know, this psychosis or schizophrenia or whatever you want to call it could have taken over my life, but underneath all that there’s.. I’m still Dolly, you know, and I’ve got my dreams, and you know, I’ve got things I want to do with my life. And you shouldn’t let it, you know, it stop your life. You shouldn’t let it stop your dreams. And basically it’s like being, you know, it’s like mountain climbing as well. We have higher mountains to climb than everyone else, but because we are, our mountains are once we reach the top, we are higher than everyone else. We see more, and learn more about being human than anyone else. Well basically what I’m saying is, who wants an easy life, because you don’t well I actually do want an easy life, but if you can’t have an easy life, see the goodness in that fact that you can learn patience, you can learn compassion out of it. You can learn that despite having barriers in your life, you can do anything you want. That’s what I would say.

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Over time, people found that they developed more stability in their lives. If people took medication, people advised getting the right sort of medication and taking it regularly, as the right medication could be ‘life changing’ as one person said. Some people managed better without medication, but had had to develop other means of coping with hearing voices over time.
People spoke about the whole range of things people could do to improve their lives such as doing research to find out more information on schizophrenia and other approaches to mental health. Others mentioned getting benefits organised, doing meaningful activities (e.g. voluntary work), ensuring you had caring friends (one person advised dumping bad friends) and avoiding stressful situations. A number of people advised people should always talk to someone trusted (e.g. a professional, a friend) as the longer the problem was ignored, the worse the consequences were. Rachel said it was important to learn how to love yourself, and David said it was crucial to ‘be strong.’

Janey says that schizophrenia isnt the easiest thing to live with, that its important to have a…

Age at interview 52

Gender Female

Age at diagnosis 29

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Schizophrenia is not the easiest thing in the world to live with, but it can be done. It helps to have a sense of humour, as in most thingsit helps to have other friends who have also got a Mental Health problembecause then you can bounce things off each other, but it also helps to have some friends who have nothing to do with Mental Health because then you can talk about other things.

One of my best friends, its photography and choir we always end up talking about, never ever, ever talk about what I’m doing in the Mental Health field.

So I think it’s important, like everything else, is not to, to narrow it down, to think oh only one group of people’s going to understand. for me I prefer to be, honest, I’ve got a diagnosis of Schizophrenia, know not like when I just meet someone, I’m Janey and I’ve got a diagnosis of Schizophrenia Nothing like that, but if it comes up in a conversation then I would not back away from it and I would not pretend I didn’t have it but I know other people like to do it different ways soI think that’s a personal choice.It might take a while to find the right medicationbut work at it some people may be able to manage without mediation, wonderful, wish I could.

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Green Lettuce tells people who are hearing voices to ignore them, get a ‘proper routine’ going,…

Age at interview 25

Gender Male

Age at diagnosis 20

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If you are getting voices in the head telling them stuff that they don’t want to know, ignore it, try your best to ignore it no matter how much it’s saying it. But try and keep your mind as occupied as possible. And try and get a proper routine, daytime routine. That you awake in the normal hours. The night times in my opinion can make it worse. Because you’re not interacting with other people and that definitely doesn’t help at all.

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Stuart found that accepting his medication and diagnosis was key to his recovery, but that he…

Age at interview 45

Gender Male

Age at diagnosis 31

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To people who have just received a diagnosis of schizophrenia, I would say, accept the diagnosis, research the symptoms, acceptance and understanding of schizophrenia, and myself have played a massive role in my recovery. You know, accepting that I’m on medication. I accept I need that medication, because it helps me sleep, it does help me keep balanced. So you know, I’ve never played about with medication, I accept. I need that medication, I think understanding, it’s always good to research the condition, all angles, you know, there’s plenty of other theories about schizophrenia out there, other than just the psychiatric view.

I think people need to do lots of research… the other thing that helped me greatly in life was I started to work with my symptoms. For many years I feared the voices, I fought the delusions and the more I, the more I feared my diagnosis, and the symptoms, than actually the stronger it became. By accepting the voices, and accepting other things, sort of weakened it. The more accepting, acceptance and understanding I have in my symptoms, the more it relieved the symptoms. So I think acceptance and understanding. Be proud of who they are, there’s nothing wrong with schizophrenia at all. I think people who are diagnosed with schizophrenia are very unique people. it’s not a weakness. There’s a very creative side to schizophrenia and I think if we look back at history, people, even Einstein has been related to schizophrenia Van Gough, Newton, Isaac Newton, famous writers and artists, philosophers, people who have changed the way we think and act, you know, have been related to symptoms of schizophrenia. So it’s a very unique, creative condition. At this current time, it’s a very, very misunderstood condition.

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Personal views on changes in mental health services

A few people spoke about how they could have been treated differently, and how they had to fight to get particular treatments such as counselling. Many people had seen changes in the services over time and reflected on what had been helpful for them. There is more about this in the ‘Experiences of outpatient and community services’.

Rachel read up about her diagnosis and fought for what she was entitled to in terms of benefits,…

Age at interview 41

Gender Female

Age at diagnosis 19

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I think what I did was when I got diagnosed was I made sure that I read up about it. And I made sure that since being ill I’ve always read all my notes, and that can be really interesting. The other thing is make sure you get what you’re entitled to in terms of support. And I’ve made sure that I’ve got DLA, Incapacity Benefit, Income Support, Direct Payments, anything I could access, I made sure I got what I was entitled to. And with talking therapies as well, I’ve pushed for in the past. And I’ve got it, and so I’ve fought the system if you like to make sure that I’ve, you know, that I have got everything going that I could possibly get to make myself as best as well, to the best of my ability. And I think that’s the most important thing I can say about that really.

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Ceridwen say that it is important to have a named nurse when in hospital so that you can talk to…

Age at interview 27

Gender Female

Age at diagnosis 20

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In hospital… there’s just, well I was, recently, the last time I was in I had a named nurse. I’d never had one of those before. And I think it’s so important to have a named nurse, who you can go to, and if she’s not on shift, you can talk to someone else, but if she’s on shift, she’s your nurse to listen to you. And I think that is brilliant. I don’t know if that’s in every hospital. If it’s not it should be.

Because when I was at the [first hospital name], if anyone did bother to listen to me it wasn’t the same person twice. And the only one who really listened to me was one, a nurse who, an African nurse, I think her name was [name], and I was very, very upset. It was just after I had been diagnosed and I didn’t understand. Nobody told what schizophrenia was. I didn’t know, until I, about three years ago, that what I was experiencing was schizophrenia. Not just me being weird, and I was very upset. And she bought me a chocolate bar actually and talked to me, and it was nice.

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One person, Ron, describes his work with the ‘Hearing Voices Network’ and the changes within mental health professions.

Ron describes the importance that the idea of trauma-induced psychosis has for psychiatry.

Age at interview 51

Gender Male

Age at diagnosis 23

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I suppose we’re seeing now, the work of the Hearing Voices Network being taken on by services and like everything services take on changed, changed to fit a medical construct, changed to fit, it’s still a disease, it’s still this, it’s still the next thing, and, [sighs] my biggest issue with my whole history now is, in an era of evidence-based practice surely we should start with an evidence base for the illness?

And if there’s no evidence [laughs] base for an illness, where, where are we going?

You know, well why do we focus on this evidence-based practice all the time? When I’ve not seen one piece of scientific evidence that proves it exists in so many of the major mental illnesseslike Schizophrenia, which is why I think the Japanese are being very bravein saying, Okay this actually doesn’t fit, this does, so let’s call it that

And I think the great thing for me about, Integration Disorder and the, this idea of trauma-induced psychosis that’s floating around now is it means the treatment mentalities will have to changeyou know, and I think that’s where the hope lies in Psychiatry is, see I don’t want to destroy Psychiatry, I sometimes get the, I used to have this reputation of being anti-Psychiatry and I’ve never been anti-Psychiatry, I’ve always been anti-bad Psychiatrybut I think that’s allowed and I’m never anti-medication I, I’m always anti-the bad use of medication but again I think that’s a, a, a good position to take, because I think one of the things about reflective practice is that reflective practice should always be critical and so when I look at myself and reflect on myself, and I reflect on this thing that was called my illness, I’ve got to do it in a critical way myself I’ve got to look at where my responsibility lay and I think that’s one of the hardest things, to accept your responsibility, that you can change it, that you can do it differently from now you know? You didn’t need to wait six months, and I hear this, people saying, Well it takes time Well why? you know, well once we know what the root of the problem is we can deal with it.

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Messages to others about psychosis

People who had experienced severe mental distress wanted to pass on what they had learned to people who may be experiencing similar problems. Looking back...