Being diagnosed with psychosis can be both emotionally and practically challenging. Listening to others who have experienced similar situations is often re-assuring and can be helpful for you, your loved ones or when preparing questions for your doctor or a specialist.
The patient aged 36, is a writer and author and was diagnosed with psychosis when she was 21. She first experienced psychosis when she was 14. She finds cognitive behavioural therapy, Buddhism and meditation very useful.
About cognitive behavioural therapy (CBT)
Cognitive behavioural therapy (CBT) is form of therapy where a psychologist works with you to change negative thought patterns and behaviour that’s causing you problems. Cognitive behavioural therapy (CBT) is one of the most common forms of therapy.
This interview has been sourced from healthtalkonline.org, award-winning research into patient experiences in conjunction with the Health Experience Research Group at Oxford University, UK.
healthdirect doesn't endorse any personal opinions expressed in the video, and we recommend you discuss any questions you have regarding unfamiliar terms or descriptions, as well as how this experience compares to the Australian health care system, with a health professional.
Dolly says doctors do not understand side effects, but is pleased her current doctor supports her in managing dosage herself.
And you mentioned that you tried before this medication that you have now, 22 others…
What was it that wasn't right? How come you got through so many do you think?
Well either they didn't work at all or they were extremely sedating, you know, I think, I can't remember which medication it was, but I would sleep like twenty hours a day. Well the doctor said to me, “Well at least your symptoms have gone.” “Yes,” I said, “But I'm not alive really. I'm just sleeping twenty hours a day.” And he said, “At least your symptoms are gone.” I said, “You don't get it, don't get it that every person should have a life, you know.” Or it, it gave me kind of really bad physical side effects. So that's why I have gone through so many. And some of that have worked but only for like a year or two, and they have stopped working, so, that's how I've gone through so many. Also I have been, like, you know, been in the system quite a long time as well.
And this one that you're taking now, do you know the name?
It's quetiapine. It's an atypical antipsychotic. It also has the name Seroquel. I mean that has been the most helpful. I am also on an antidepressant called citalopram and I take other medication but that is for physical ailments. That has been the kind of right balance and that has kind of helped me I would say, this last year or so.
So that controls the symptoms that you normally experience or?
It really helps with paranoia. I'm not as paranoid as I was. The voices are there, but they feel like they're in the other room, rather than right next to me. I mean it just feels like the distance between me and voices has been widened. So that's how the anti psychotic drugs have helped, in that way. The antidepressant, well I don't know if it, it works. I do suffer from Seasonal Affective Disorder, so during the summer I'm OK, but you know, in the winter I do get very low and I don't feel like the antidepressants are working then. So I think, you know, on the whole, it's a good balance.
And do you get, I mean do you get any side effects or anything from those?
I sometimes get a dry mouth… that's it. I mean they are quite good for side effects as well, you know.
And you've got the dose right?
Well I've been kind of told by my doctor if I feel like I need a bit more, I can give myself a bit more. Not many doctors will say that to their patients [Laughing]. So I have, when I feel like I have gone slightly a bit more paranoid, I will increase it myself. Well just only, you know, not that much, just one more tablet. So for the most part, yes, I am on, you know, the right dose, but I do increase it slightly when needed.
Dolly describes her reasons for wanting to stop taking her medication and the importance of having a "supportive structure" around her.
I mean, there are kind of a couple of times I have wanted to stop taking medication, because even though it helped with the kind of negative symptoms, you know, I was just going to bed at a silly time, like 8 pm and waking up like 8 or 9 and it just felt I didn't have the energy to do stuff I wanted. And also kind of, the kind of political aspects, you know, of how the pharmaceutical companies have some much power within the mental health system. And that I didn't want to be part of it and also knowing that a lot of the pharmaceutical companies test on animals which I'm not comfortable with. So for those reasons I have tried to stop taking it before, but it usually just ends up me becoming very ill very quickly.
Hopefully in the future I would like to be off my medication but I realise what my mistake was before. It wasn't having a kind of strong supportive structure that was there if I did become unwell, and how I would kind of deal with stressful, stressful situations. But that's, I think something for the future, not right now. Because I'm kind of starting university as a mature student in September. You know, I don't want to get ill, so I'm going to stay with it, at least through my kind of university time, and maybe after that, kind of try and find a way of coming off it.
So just to make sure that I understand because earlier you were talking about medication not being like a cure as such.
And so when you are talking about may be in the future being able to come off your medication is that because you see yourself recovering or is that because you see yourself finding a way to manage without medication?
Yes, just to manage without medication, you know. I have come to the point I don't think I am every going to be rid of these symptoms, because I've just had them so long. So it's finding like other ways to manage the symptoms, that's, you know, what I'm kind of investigating and kind of slowly building up a supportive structure around me really. So, you know, when I do hopefully come off them, I've got something that will, you know, will keep me standing really.
Dolly says your life is precious and you have the right to live a fulfilling life - don't say you can't do it - say you can do it.
The message I would give is I know when you are at your worst it's a horrible thing and you don't know what to do… It's very to give a message to somebody because if they're in that horrible place, it's really hard to get them out. But, you know, your life is equally as precious as anybody else's, you know. You have the right to be listened to, and you have the right to, you know, to live your life in a fulfilling way. And that, you know, you can do it. Don't say to yourself I can't do it. Say to yourself I can do it. I mean if you say I can't do it, you're letting a sentence that isn't worth six or seven seconds rule, dictate your whole life. You know, rather say you can do it. You know, I am the proof and so many other people are the proof that you can change your life to be something that is precious and beautiful to you, you know. And you can't say I don't know what it's like to be in that horrible place, because, you know, I have my war wounds to prove it, but, you know, you can have an amazing life and you deserve it really.
She'd like health professionals training to involve people with mental health problems and suggests professionals relate to service users like a member of their own family.
And what about messages for health and other professionals?
…I think you need to hear, when you're studying your subject, you need to have equal time, listening to service users as well as just, you know, your teachers and your books. You, like your, your experience and your work, be… truthful really, you know, you're relating to other human beings, you know, don't use your kind of use your, your professional role to step up a few steps away from your, your, your client. You know, look them on the level, they're your equal, you know, even if, you are taught otherwise, they are your equal… You know, speak to them as a human being, you know, as if you are speaking to someone you love, like you are speaking to your daughter or your son or your, your Mother. You know, it's to, you know, relate to them… you know, let, you know, let them understand that they are not alone.
Her White, male psychiatrist is supportive, but she says it's important that the rest of her mental health team is made up of people from different backgrounds.
And do you see a psychiatrist or…?
I see one every two months… Yes, he's quite good actually. He is I didn't like him at first because I thought he looked like a banker [Laughs]. But he proved to be really kind of good, you know, supportive. I mean he's really helpful, with, you know, me preparing to go to university. He's making sure I get all the support I need from the university. So, you know, he has been good. Yes.
Are they white, your Mental Health Team?
My psychiatrist is white. My nurse, she's a Black woman… It's the Mental Health Team is reflective of the kind of ethnic, the ethnicity of the area I am in, which is really good actually. So there is a mix of white, Black and Asian professionals, you know.
Do you think it matters?
It does matter. Hugely it matters, you know.
In what way?
…It's just you just feel more at home really, if I mean, for example, when I was growing up, we lived on a kind of really hugely racist street. So… and that made me at times too scared to go to school, and, you know, and I'd be surrounded by teachers asking me why was I scared. They were all white, they had no, any kind of understanding of where we were coming from saying, you know, we were too scared to go to school, because there were certain people in the street who would swear at us, or spit at us. They just, they hadn't been through the experience. They would try to argue… You know, their argument that it's not so bad. You know, people aren't that bad and stuff like that, yes. It's just… I think every Black person in this country has experienced some racism unfortunately…
It's a very huge, sort of tricky subject actually. But to me it just feels nice that there is a nice of, not only ethnic backgrounds, but ages and kind of sexualities and it, all, you know, all that really is helpful, you know. Because I mean, how could I relate my life to what, for example, a white middle class, professional male, when my, my, my experience has been the total opposite, you know. That he's in a very empowered position, not really understanding what it is to be disempowered. You know. So it, it just closes the gap between service user and professionals if there is, you know, you know, other kind of other ethnicities and kind of other ways of life, you know, in. So it just closes a gap and the gap needs closing you know?
Dolly finds CBT helps her avoid psychosis, but isn't so helpful when she's unwell.
I mean do use kind of stuff like CBT which is Cognitive Behavioural Therapy to kind of stop it getting any bigger. Sometimes it helps. Actually most of the time it helps but there are some certain occasions where I'm always having a kind of rough time anyway, and I'm not sleeping, or I've just been physically ill, so CBT is hard to kind of use. Then it does happen, it happens less frequently but it still happens.
So when it does work, how does that help?
Well for example… the last time I used CBT effectively is that sometimes I think that people are clones, that they're not really the people they say they are. And my kind of CBT therapist said, “Why do you think that is?” I say, “Because the other people are acting strangely.” And so we kind of broke it down and what she found, what we found is that… I was already slightly becoming unwell, so people's response to me, their kind of attitude would shift, because they will say, you know, “There's something amiss with Dolly.” So their, their attitude would change, but I was misinterpreting that change. I was thinking that that was proof that they were clones, because they were acting different. But she said, “No. It could be that because you're acting slightly different way, they are acting slightly different.” So I mean that kind of really stopped that. That kind of psychotic episode from being bigger than it was. So… it was just breaking the things down, and just seeing, you know, psychosis isn't, isn't random it does follow a certain path and your thinking and your behaviour helps feed that, you know, directs that path, so to speak.
What is that path then, can you explain?
Well we've all got a set way of thinking and, you know, for example this, this clone thing. I would always assume that the other person's kind of difference in attitude was there was like only one reason for that. So that was the usual path that I went down. So the CBT provided me kind of another path that, that was kind of more truthful and more showing what was, you know, really, happening. So, I think that's what, you know, CBT has kind of shown me your thinking can change the psychotic experience so that's what I mean really.
Dolly says medication is not a cure.
I have been on 22 different medications. The one I'm on now does kind of keep me, you know, on the even keel and does help. But then, you know medication isn't the be all, you know, and end all of it, because if it could cure me, I would take my medication and then just have a normal life like everybody else, but it doesn't work like that. I still have my kind of residual symptoms and my, I am a totally changed person from who I was before, you know.
Because of the medication?
No, I mean the medication is not the cure, is what I'm basically saying, because if it was a cure, I would be back to what I was before I was when I became ill.
Dolly says it's difficult to distinguish paranoia from reality because sometimes "paranoias are really happening to you".
Like I said my Dad had schizophrenia and was very paranoid. But to me his paranoia was sometimes justified because the response of these, these neighbours. So if he thought somebody was going to throw a petrol bomb through his door, it wasn't really that far fetched to me, because we, you know, we were already getting spat at and stuff like that. So I mean it's… I didn't have to travel very far from being, being where I was to being paranoid. It was a very short journey. And partly, you know, partly justified. I mean, you know, all paranoias, sometimes paranoias actually are really happening to you. For example, two years ago, the same neighbour actually, reported me to the DSS saying that I was working. So I had DSS investigators watch me. So I was, I was telling my nurse that. “There are people watching me in a car outside.” She said, “That is just your paranoia.” But it was actually I was proven to be right and I had to be interviewed under caution, which was actually really scary. But I was totally cleared after the investigation of what this woman was accusing me of.
So sometimes paranoia's, it actually can be, you know, happening to you. So that is why a lot of kind of white people, you know, when you say, oh if you're a, say a black man, and you go into an all white workplace, there is, there is something underlying happening, maybe only he senses. So you can't really dismiss it as paranoia, it might have some truth. I mean it is tricky, you know, what is, you know, what is paranoid and what is really happening, you know. It gives me a headache trying to work things out really, yes [Laughs].
Dolly felt vulnerable on a mixed ward when the male patients made sexually explicit comments.
Well my times in hospital have been very kind of, like I said, traumatic, you know. I remember the, one of the first times I was on a mixed ward, and there were kind of guys that would just pester you, you know, they wanted, you know, you to go out with the them, or they even asked me really abusive stuff, like, “Can you give me blow job?” and stuff like that, and the nurses did nothing to kind of stop it. Even if you told them this was happening, they'd say, you know, they would just shrug their shoulders. So… I mean, it's just, I think there is a kind of, my Mental Health Team is really good, but once you go into hospital it's kind of different ball game, and I don't think the staff are that motivated or they're badly paid as well, so they don't really care about the people, you know, the people, they have to look after.
And you have to understand these people are the most vulnerable people, at their most vulnerable. And But, I mean I did say to one nurse. “I used to work in a supermarket and if I had spoken to a customer the way you've spoken to me, I would have lost my job. But you won't lose your job, you know, you won't lose your job even though you're, you're dealing with really vulnerable people.”
Dolly was admitted as a voluntary patient but was threatened with a section when she tried to leave.
I have been sectioned once. And three other times I have been voluntary. But it's a weird kind of voluntary. Because they say, “You're in voluntary, but if you try to leave you're sectioned.” So and I have tested that theory, and said, “I am leaving now.” “Oh well we are just going to section you then.” So it's a weird, weird kind of thing, they say voluntary but you know, really no.
And what was it like when you were sectioned, what happened?
Well I think the first time I was hospitalised, I don't really remember too much about it. I just remember going to see my community nurse, and then I just remember being driven to the hospital. It just seems quite vague. Whether I have just blocked it out or whether I just don't remember I don't know, but it was scary I mean, because that was the first time I was in hospital, you know. And I wanted to go home, you know.
Source: healthtalkonline.org (Mental health: ethnic minority experiences, Aged 30 - 39, Dolly - Interview 14), Reachout.com (All about psychological treatments)
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Last reviewed: September 2013