Psychosis

Symptom Onset / How it Feels

Dolly: Basically I was just recording some music off the radio, suddenly I started to hear kind of another voice apart from the person speaking on the radio, and it was quite deep and it was quite gravelly, and it was kind of almost sounded a bit demonic. And I, first of all it was just, it started just for a few, you know, a couple of seconds then it went on. I thought maybe there was a bit of kind of interference on the radio, but then it was kind of directed at me it was kind of “Dolly I can see you, I'm watching you.”  And I got so scared I unplugged the radio. But I could still hear this, this voice, and it just, to me that, I mean, now I know it was the beginning of my psychosis, but I actually thought there was a, you know, there was a devil in the room with me, and it was speaking to me.

Kirsty: I  presumed that I was quite popular at work but I wasn't really outgoing or extrovert, or, you know, confident and that in my social life. And eventually my work life began to suffer as well, and that, and I actually thought I was dying. I was getting a lot of strange symptoms, and I was backwards and forwards to the doctor and that getting different tests done.  And then he, I've gone in there one day and he said, “oh, you know this, you're absolutely fine. There's nothing wrong with you.” And I just exploded and that, so he said, “right”, you know, “I'm sending you to see a psychiatrist” sort of thing. And, that was me, yeah, in with the mental health service.

Graham: And this was when I first went into psychosis. Basically I began to stop sleeping, and accompanying that I couldn't stop thinking. And for the first time in years, the thought of self-harm became really prominent in my mind again. And I told my wife that that's what I was thinking and we went to see a GP who made an emergency referral to a psychologist who was going to see me quite quickly to see if we could do something about it. And then it's really hard to describe what happens. I wasn't, I was just thinking and thinking and thinking and not relaxing and then everything inverted and half formed thoughts  became very real. I began to think that my blood had been poisoned by evil spirits and that I was evil, and that there were spirits around me warping my thoughts and changing my thoughts and that was very frightening. And I didn't know what to do with it.

Diagnosis

Dolly: I stopped going to school. Social services got involved because, you know, it's a legal requirement that I have to go to school. And I just refused to go. So I did see a child psychiatrist when I was 14 but she was just awful. She just basically told me to pull up my socks and stop being such an attention seeker, which kind of made me just clam up after that. And I didn't want to talk to anybody about anything really. So, you know, she did ask me was I hearing things that nobody else could hear? And I said, no, because I didn't trust her, you know, I just thought, you know, you're looking down at me, you don't really like me, and you think I'm being silly, so why should I tell you anything?

Tim: It took me 13 years to accept it completely, but I guess it was always paranoid schizophrenia with a very poor prognosis, I can remember it yeah.

And had you heard the term paranoid schizophrenia?

No, it was a new one to me. I never thought I'd become a mental patient. In my teens, I suppose, I looked down on mental patients. Not anymore since I’m one of them.

Stuart: One of my immediate responses to my diagnosis was, oh good when can I go back to work? You know, I thought they were going to 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.

Andrew: I think that there always will be schizophrenia. I think that's, studies show that, about 1% of every population, in every culture throughout the whole of mankind will suffer from schizophrenia. And that won't go away by abolishing the term schizophrenia. I think it might be helpful to, to abolish the name schizophrenia and to replace it with something like perception disorder, which I think is a term they've used in Holland. And it would be helpful to abolish the term schizophrenia in the same way that manic depression has been abolished and, mental subnormality have been abolished.

Tom: I was very upset, at the start, when I first was diagnosed, just because I, you know, I thought, well, this is, this, I just thought this is the end of this, this is the end of my life, you know, this is my life's over now. So I was very upset and, but also quite relieved because I,  by that time I knew that something would be would be done about my, about what was going on. Something would, you know, so that they’d, somebody would get something done, they’d give me some tablets or something or send me to hospital for a while. And I’d hopefully, that hopefully I get a bit better. So it was a combination of upset and relieved.

David: When I was about 18, 17-18 there was a military psychologist who said I had a stress disorder. Later on with doctors one of them mentioned that I had personality disorder and over time there were some that said, “well, you shouldn't have been given the personality disorders, that basically means everyone's given up on you” and someone else went “well I’m going to say it’s borderline.”

And then since then I’ve had people say “you haven’t got one at all” and then laughed [laughs]. Depression and anxiety are two that have come out a few times and sort of stuck. I’ve never really talked a great deal about the psychosis and that because it's always afraid of consequences of what could happen. And from some of my mates and that and I've seen they've actually have been backed on to really strong medication and sectioned and everything and then been shouted at about all the music tastes are being blamed for their current state.

Jenni: Because I didn't get on with the first doctor they were trying to keep me away from the doctor. But it turned out it was just that doctor it wasn’t all of the doctors.

What was the matter with him then?  

He was just really really like abrupt. I don't know if he was racist. He was white, but he was really like, “oh, you've got schizophrenia, it's the onset of schizophrenia.”  And he basically acted like there was no hope for me, whereas other people are like, “oh, you'll get better” and giving me practical advice like, wash yourself, go for some exercise, eat vegetables and fruits, and do you know what I mean, all the like, practical skills that people have in life, but you go out, they go out of the window when you become unwell because you kind of lose your grip on everything. So no one was giving me practical advice they were just writing me off, basically that doctor.

Pete: When I eventually did get a diagnosis, the consultant gave me the diagnosis, I can remember his words as clear as anything they said “Mr. [name], you are a chronic schizophrenic, you will never, ever work again, go away and enjoy your life.”  And I remember thinking, well, how does that work?

Rachel

And what's your attitude now to diagnosis, your general psychiatric diagnosis?

Well, I think it's important to give a diagnosis because when you read the symptoms, because I got the Oxford Book of Psychiatry and like thought they haven't got me right, you know they haven't -, they diagnosed with schizophrenia and didn't take into consideration my mood. So they, you know I'm schizoaffective definitely in between the two, you know definitely. And I mean, you need to read up a little bit don't take somebody else's word for it, really. And you need to make sure that if you feel happy with what they're telling you.

Graham: I used to think a diagnosis was really, really useful. You could…, it was tangible, you could grasp it. You could either challenge or disagree with it or accept it. And it made sense of an experience that other people didn't have. And now I almost reject diagnosis because it feels like it defines you and it defines you according to other people's values. And it can label you as a victim, you can almost conform to the stereotype of being a patient and what's expected of you, you know. And for the first time in all my life, you know, it's now 27 years since I first came into the mental health services, and I never accepted I was a mental health patient, if you like, according to the stereotype. And now, you know, the people around me are wonderful, who come and help me. But now I have no choice but people,  if my nurse wants to come into my home, she's got the right to. I can't refuse it. And it's not that I'm different I just feel like a patient. I feel diminished, and part of feeling diminished means that I want to reject what they're saying about me.

Experiences of health services and settings

Ceridwen: In hospital…[…] the last time I was in I had a named nurse. I’d never had one of those before. And I think it’s 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.

David: I always thought, I always had like the illusion like doctors and that are always brilliant and they know everything and I've learnt now that's not the case. And they know about as much as we do most of the time if not less at times. I've seen a lot of doctors over the years and 90% of them weren’t ever particularly that helpful, there’s only a couple I've ever met which have been good to talk to. And I've actually felt like have listened or directed me in sort of the right direction, but I know a lot of that's got to do with mental health and that which is thankfully seeing change a fair bit over the last few years, over the last ten years or so. I know that more things are being recognized.

Graham: I went to the GP the next day and she again -, sometimes the help I've got from professionals is superb. She was really, really good. She put me in a room on my own after I'd explained myself and by then I was really quite inarticulate and my body was making all sorts of jerky movements and, and she phoned the hospital and said I had to go there straight away and, by then it was sunshiny and every bright reflection was a spirit in my mind. So on the journey to hospital I was hiding in the well of the car from spirits, and we got to the hospital and I was seen by a psychiatrist quite quickly, and in the room he was interviewing me and then the phone rang and it was a person in huge distress. She was obviously suicidal, and I immediately assumed that I was beaming evil thoughts down the phone and that I was causing her to be suicidal. So I ran from the room and hid in the courtyard, and a nurse came out and she was, she was really nice, she was very calm, and she just crouched near me and just encouraged me back in. And then I was admitted to hospital and, and that was quite hard. Just because you're going into a large institution and you're very distressed and you're very confused and basic things like where you're sleeping and how to eat and what all the other people are doing and where you're allowed to smoke and where you're not was just bewildering. So I just got very frightened. And I spent most of the first day, hiding under my bed.

Pete

Can you describe your initial experiences?

I can, the first one was very, very frightening. The GP had come and he said, “I think you should go in hospital.”  Now I was ignorant to mental health, and I mean very, very ignorant so I never thought of mental health services. I thought he was going to put me in a general ward. I thought nurses fussing around for a couple of weeks that's not too bad you know. So my dad said, well, I'll take him. And he took me to the local psychiatric unit and it was a real eye opening experience. It was absolutely filthy. There was people laid on the corridors, there was double mattresses on single beds. It was really really frightening as well. And I was put in this like observation room and this female doctor came to see me and asked me what had been happening. So I tried to explain, and her next comment really, really shook me because she actually said, “I'm going to start by giving you a rectal examination.” And I couldn't understand why I thought it was an elaborate plot they just want to abuse me again. And the fact it was a female saying it, and I'd been abused by a female. So I tried to run away I tried to run out the hospital, and at this point I hadn't been sectioned. And this nurse said, “you can leave, but if you leave we’ll section you”, which I've later found out it's illegal because it's coercion. So I decided to stay and my behaviour spiralled out of  control. And I was sectioned under the Mental Health Act.

Dolly: I remember the first time I was in hospital it was horrible ‘cause it was it was a mix…, a mixed ward. And, you know, a couple of the guys were really aggressive and wanting kind of, you know, sexual favours. You know  I did think at the time that these women are at their most vulnerable, you know, especially those…, the ones that are depressed and can't even do anything and having kind of guys, being quite aggressive about their sexual advances, you know, how is that supposed to be therapeutic to the person? And it was the very first time, the very like, the first hour of my being in the hospital, I didn't see anybody. Nobody said hello ‘cause I, you know, brought me into the ward and then there's a kind of nurses station. And none of them went, “hello Dolly” you know, “how are you?” They just, you know, it didn't even -, I can't say they even ignored me, they just didn't acknowledge me. And then kind of like, one  healthcare assistant said “oh just sit in the living room”, not the living room the TV room,  “somebody will see you soon.” I just sat there for like three hours before a doctor came to assess me. So I was really scared. I had, you know, nowhere to put my things and I -, you know, bearing in mind I hadn't been in hospital before, I didn't know what to expect. I just felt dumped there and, but you know, very kind of alone and still, you know, hearing and seeing things.

David

And so you got admitted  into the hospital, what was that like?

Well when I was first was admitted I came in voluntary and honestly I tried to walk off the ward and they give me a three day section, they’re going to have to test my section but I know when I arrived, I know I was a right place by you know, I was yeah, I’ll stay there.

And how did you find it in hospital?

It was all right yeah, yeah. I was, I felt safe, I was in the right place like. It was a bit frightening like and all the strange behaviour going on, you know, but yeah … but like I say I felt that was the right place like, you know.

Views of and responses to treatment

Janey: I hated depo injections. Really hated that. I think that the six months I was on haloperidol depot was the worst six months of my life by a long time.

What was happening?

Oh gosh terrible medication for me. If I was up walking around I wanted to be lying down, and if I was lying down I wanted to be up and walking around so I couldn't actually get my body comfortable ever. Oh gosh it was so awful and I just wasn't interested in anything. And at the time, because I suppose I seemed okay or at least not psychiatrically ill, I couldn't get the doctor to understand how awful it felt, and in the end, and I said, so I said “okay, I'm not taking it then.” And he said, “well, if you do that, I'm going to tell work that you're not cooperating with treatment.” So I stuck it for six months and then said, “I don't care what you tell them, and I don't care if I get sacked, I'm just not taking it anymore.” But it took doing that to actually get anyone to do anything about it.

Tom: For the first few years, I was, after my diagnosis, I, I went from medication to medication to changing, always changing round and I had some really bad ones, there were some. But this is -, and it was some while before I, I was on, what I can -, good medication, which is, which is what I'm on now, because I think it hadn't come out at the time that I was ill. It hadn't, you know they’d just, it had only come out a year or so after I was ill? So I was, which can and does happen, you know, they’d -, it's a much -, which which it was a much better one and that's the one I'm taking now, which is called sulpiride. Which, which is fine, you know, which is, which is, which I'm quite happy with, you know. But I did have to go,  have to try a few of the old, the old fashioned ones before then, which had a lot of quite horrendous side effects for me.

Jenni: Like, if you are talking about psychoanalysis you're talking about your childhood and, like, problems in the past, but CBT is more like I'm having a problem with this woman at work, how should I handle it? And they give you skills and tips to handle your current situation, rather than digging up into your past about why it's happened. Yeah so that's really good. I think the NHS uses that type of therapy.

How many sessions did  you have of that?  

I had a course of ten and that was really useful, yeah.

So what kind of things did you learn from that that you found useful?

It was again, it was about handling people because the problem with this illness is it seems that you're very susceptible to having problems with relationships, and you're very sensitive and vulnerable to people and people being assertive, people not being open, stuff like that. And yeah so it just taught me some skills of how to handle nasty people at work, bitchy people, pushy people, that kind of thing.

Pete

I know you talked a little bit about it before, but what's been your personal experience of medication?

Very, very negative. It never ever took the voices away. It destroyed my life physically. I still have very, very severe stomach problems now. I don't take any medication now, I believe the stomach problems are linked to long-term use of antipsychotics. Probably never, didn’t admit to that. But as I say, I was naive when I went into the system. I didn't know anything about psychiatry or mental health. I saw this psychiatrist as being the expert “take these, they will cure you.” They didn't. “You just need to take a bit more and they will cure you.” And it went on and on and on to the point I was on, as far as I can remember at times 2400mg of sulpiride, 45mg of Stelazine. I was on fluoxetine,  mianserin, lofepramine, chlorpromazine all at the same time.

Dolly: Well  I've kind of a lot of, I mean, I can't think of one part of my body that hasn't really been affected by, you know, side effects, for example, blurred vision. You know, I love reading and writing, if I can't do that, why you know? Just having, you know, I remember there was one medication that you see used to make me drool. That's why that's why I think it's really interesting people think, they associate certain physical characteristics, like the shuffling and the drooling as signs of madness, and it isn't it’s signs of medication. And, you know, and I just remember just drooling all the time and yeah. He said “oh it’s just a little thing” you know the doctor was saying, you know, “just ignore it” I said “how can I ignore it every time I speak to people they look at my drivel”, you know. I mean, I, there was one medication that I took that, you know, was doing things to my liver my doctor was telling me, so they took me off of it.

Well basically, I mean, it was just, it was I mean, it was awful. Just, you just felt like you had no contact with your emotions, you had no contact with your thinking. And one medication I was on, I just kept literally just nodding off to sleep. Even if I were on a bus and I did nod off to sleep on a bus, and somebody stole my bag. So I said to the doctor, “I can't be on this medication this is what it's doing to me.”  So he said “well, you know, you look calmer than you were with, before you were on it” [laughs].

Jenni: Changed drugs after I went to visit my birth family, I changed drug and the new drug was better for me. Like -

What was the new drug?

- Citalopram or something like that. Now I'm on three medications. I'm on a antipsychotic, an antidepressant, and a mood stabilizer. And together they work, they make me feel better, and I never…, I thought oh God, people think like, oh God, what a burden like having to take three medicines a day that means you're not better, but it means that I am better. Do you know what I mean yeah?

Kirsty: And, I know in particular the injections you tend to lose your dignity, to an ext…,  I mean, you do, to an extent in a psychiatric ward anyway, although it's not going to be as bad as prison, but, yeah, the injections sometimes you know, you do tend to feel that you are not in control at all, but, yeah.  I mean now I have no problems -, no problems about taking my medication at all. But at some points in the past I've been very suspicious of it, and that and you know, sort of. So I've not taken as much as I should or, you know, completely ignored something.

Graham: Intellectually, you know, intellectually, I can almost accept that I have a, you know, a serious mental illness called schizophrenia which is on occasion life threatening. And the only way to keep me stable and functioning is to take an antipsychotic medication. You know, that's the bit that happens in words, in my mind and says, yes, I agree with that. And if it was like that I would just take my pills and all would be fine. But my heart, my inner being, doesn't acknowledge that. It doesn't say I have schizophrenia it says I'm a person. I don't feel ill nothing about me feels ill, I have experiences which are pretty horrific, but they’re a part of who I am. And, you know, I'm not the only person who believes in evil and devils and yet…, and I hate taking medication. And it's, it feels like an affront. And that's, that's why I ended up in hospital last time because I stopped taking medication.

So when I went to that, when the tribunal happened, in a way I didn't mind that they sectioned me again, because I know if I don't take my medication it's likely that I'll end up in a place where I might die, but I can't bring myself to do it voluntarily. It's, it's like taking poison willingly. So in this way, it's been okay because it's taken out of my hands. It’s ok they make the decision. I don't have to pay any responsibility to it. And someone tells me I have to do it so I can say I'm doing it against my will, but do it. And sort of in the back of my mind, a part of me says, well that's probably quite good because it means I'm alive. But I hope it doesn't carry on indefinitely. I would like to get to a point, I'd like to get to a point where I don't have to take medication, but I think the professionals around me have got no intention of letting me do that. So I don't think about it very much.

Ron: You’re socialized into being a patient. You know, the system creates more than just the diagnosis. It creates this patient, that's a patient whether they're in hospital or out of hospital. Like most people, when they go to outpatients don't consider themselves patients, you know, they're going to get, normally get discharged, you know, it’s a follow up after an operation, they're going to get discharged. They’re not thinking to themselves, you don't think I am a heart patient, you know, whereas in psychiatry people do  think of themselves as I am ill. And it's almost like they hold that illness, you know, and they need that illness because that's reflects for them then who they think they are. You know, and for me it's about move beyond that, thinking I- this is not who I am, this is who I am. I am all these different parts, you know, the four faces of man or woman or whatever, however you want to describe it.

What does recovery mean to people?

Graham: I think recovery is a very unfortunate word, I wish they’d chosen a different word, because it causes such offense to people who don't believe that they will ever, if you like, get better again. And there's this misinterpretation about what a recovery means. I think what is inspiring is saying that we all have our own journey to make, and our own interpretation to make about what illness is. I think that's really, really good. That's liberating and allows us, especially with unconventional thoughts, to feel secure in our thoughts and have them seen as valid, and to look at our strengths and what we can bring to the world instead of looking always at the failure and the impairment, is really good. Where I think it goes wrong is that it sometimes substitutes itself for being the voice for all users, which I think is wrong. I don't think it is. And sometimes I think it becomes almost, almost a religion if you don't believe in recovery, then you're just misguided. You can't have a valid disagreement with recovery. Everyone in mental health has to believe in recovery, but in many ways it's a very diffuse subject. It's not. When you start talking about the recovery model of the design of a building, you're being really stupid because it just means what improves mental health. And just saying recovery model is just rubbish.

And there are too many people who have a value base around recovery that says the only way to recovery is certain models like getting into employment or believing in this, or being free of medication, or whatever. Which is a judgmental patronizing way of saying people should speak. There are, people have hardened themselves, what I think is wonderful about people with mental health problems speaking out, is that we have a vast range of opinions, and all of them are valid. From those people who believe medication and ECT is a lifesaving vital treatment, to those people who believe sectioning is the greatest infringement of human rights. And there's a vitality and a breadth of wonderfulness in everyone expressing those things, which is great. And sometimes people are caught in recovery think that there is  one way of thinking and if you don't think that way then you're misguided, you haven't educated yourself enough, and if you just listen to the disciples of recovery you would have a guided sensible view. And that, I find, is really offensive. What I think is wonderful is giving that belief into people having sense, a sense of their own journey, and a sense of their own strength and a sense their own worth. That's, that's where it should settle, rather than thinking it's in concerned with everything else. And I think, you know, when, when services start talking about recovery focus, that's fine but often it's just a bit of gloss. And everyone says recovery, they say recovery without even thinking what it means sometimes. And I find that quite offensive because it's just taken over. It's become, I hate the word political correctness because it’s such a stupid thing, but it's become a dogma. And that's really, really annoying because it's a wonderful, wonderful, liberating concept which is in danger of distorting voices and not allowing voices to be heard just in case they don't agree with the concept.

Gary: There's no such thing, there's no such thing. People, doctors, GP's, nurses, whatever all try and say like you can recover from this. My psychiatrist, and this is why I respect him so much, is he said, “you're not gonna recover, your gonna have it for the rest of your life. But what I can do is help you manage it better.” So recovery for some people just doesn't happen. It doesn't.

Rachel: So I just kept working but periodically I'd go into hospital and I'd have about six months off work. So it was very stressful. Keep becoming unwell get better, keep becoming unwell, get better. So it was really, really hard work and I now feel a lot more relaxed. And people say that I'm a lot more relaxed. But one of the reasons is, is that, not that I was non-compliant but sometimes you start to get high and you'd feel better, and maybe you weren't as organized with your medication and things like that. Where now they bring it to my house and they bring it to my house every three weeks in blister packs. And the other thing is, is that I'm monitored because she comes to my house, my CPN, every three weeks that means that, you know, whereas before, with other times in [name of places] it was very busy, you had to go to them. If you became slightly unwell you would end up missing appointments because you felt unwell. So you didn't go. If I feel unwell at home, there's a knock on the door, and I just open the door and there she is and just, “How are you.” And I say, “I’m not very well.”  you know, and it’s a completely different set up. And that’s only from  being in [name of place] where services are very good. So it really is a postcode lottery as to where  you live as to what standard of care you get. Which is quite amazingly different to be honest. And when I was unwell up here they got the crisis team and they used to come out to me, including weekends, and they came out to me every day for at least a couple of weeks until I felt better to do without them.  

Rachel

We started to talk a little bit about recovery. What does that mean to you?

Oh, it's so precious it is such a precious thing. Recovery to me means that I don't have overwhelming symptoms, that I am able to function. Recovery to me means that I'm in the community and not in hospital. You know when I am in hospital I am desperately unwell, and anything that is better than that is recovery as far as I'm concerned. I don't have what some people would regard as a full life. I have a happy life, you know I haven't got two beans to rub together, but you know that's the way it goes, that’s it. I can’t work but it doesn't mean that I don't have a fulfilled or useful life. And that's taken me a long time to accept and come to terms with.