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Sara - Interview 32

Age at interview: 31
Age at diagnosis: 17
Brief Outline: Sara, 34, describes herself as Indian and has a diagnosis of depression. Sara's food bingeing was interpreted as psychotic behaviour and she was diagnosed with schizophrenia. In her late twenties, however, a specialist diagnosed an eating disorder.
Background: Mental health worker, single. Ethnic background/nationality: Asian.

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Sara, 34, describes herself as Indian, and has been diagnosed with depression and an eating disorder. She says that her mental health problems began in her childhood when she was experiencing difficulties at home. Although she was a very bright child, she was withdrawn and depressed at school because of the problems in her family. Sara says that her mother was dominating, critical, and paranoid, and used to tell her she was fat and a nasty person and put her on diets. Sara's mother made her lie to the GP about the reasons for her depression. Sara took a paracetamol overdose in her mid teens and as a result was asked to leave her school. She was made a ward of court and although she was forced to see a psychiatrist, a social worker, a court welfare officer, and a psychotherapist, she says she didn't want to talk to them because they were not nice people and her mother had told her she would be put away if she did. Sara felt out of control and began starving, bingeing and self-harming. 

Sara says she didn't fit in at college because she wasn't thin, beautiful, middle class or white. Sara took another overdose whilst at college. Although she excelled in her A-levels, she couldn't face going to university for several years. Sara achieved a first class degree but felt like she didn't deserve it. During this time, she says she was too afraid to tell the doctor how she felt in case she was forced to have treatment, but eventually she did and was diagnosed with depression. 

At one point, Sara reached a dangerously low weight and was very depressed. She began bingeing and stole food. Sara says she was sectioned because her behaviour was interpreted as psychotic' she was diagnosed with paranoid schizophrenia and given antipsychotic medication. Sara believes that if she had been a white middle class woman she would have been diagnosed with an eating disorder, but no one would listen to her; instead she was told she didn't have insight. Sara says the majority of staff on the hospital ward were cruel, although she says she did not encounter any overt racism. Sara says she also found it difficult to relate to a psychologist she saw as an outpatient because she was a thin, beautiful, white, middle class woman. She says that middle class white people look at people's experience from their own perspective and do not understand Asian culture. It was not until Sara was sectioned again that she was referred to a specialist who confirmed that she had an eating disorder and that her symptoms had been wrongly interpreted. Sara says that professionals should listen to their patients.  

Sara has found taking vitamins and amino acids, running and attending a self-help group beneficial. However, she says that doing psychological work, following a healthy diet and exercising is hard work. She has decided not to take antidepressants because she's worried about side-effects and becoming addicted to them.

Sara says that her mental health problems have limited her choices in life and wonders whether she will ever be entirely free of her depression and eating disorder. Sara has now been working part-time in the mental health field for about a year. Sara's advice to people in the mental health system is to get an advocate and to keep fighting.

 

Sara was "thrown out" of school after taking an overdose. (Played by an actor).

Sara was "thrown out" of school after taking an overdose. (Played by an actor).

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The school started saying I was depressed and I needed to see an Educational Psychologist. And I didn't want to go. I didn't want to see anybody. I think now looking back, I feel quite angry that they thought that I was the problem, when in actual fact it was my family that was problematic, but it was like they were pointing the finger at me, 'You are abnormal and you need to see somebody, a psychiatrist or a psychologist.'

 We went to see my GP and my Mum told me what to say to him, and she was there making sure that I said what she had told me to say, and so I just sort of said that I had classroom problems at school, which is true, I mean I did, I wasn't popular at school. I didn't have friends. I was appalling at games, which makes people very unpopular and yes, so I didn't have any friends and I wasn't, I wasn't popular with the teachers either, but I just said that I had school problems and it was just, it was an ongoing battle for like about four years, between the school and home. You know, they would look for any evidence they could that I was, because what happened, somebody wrote to them and said I was depressed and that I needed to see a psychiatrist. And they picked up on that, and I think because they were a private school they didn't want any kind of problems there. So they just kept saying to my parents, you know, 'If she doesn't see a psychiatrist she can't continue her education here. And they would look for any evidence they could, like you know, I wrote a poem, and like they would bring a poem, a poem, in on subjects, and they would bring it up, like two terms later and say, 'Oh, she wrote this poem so she must be depressed.' And it was things, that you know, it as just like they were looking for evidence that they could find, just to hassle me, and of course it made everything worse at school. It made everything worse at home, because they were going back to tell my parents. And my Mother was getting angry and saying, 'Why are you behaving like this, and letting them think there is something wrong?'

And yes, the whole thing kind of culminated in me taking a massive paracetamol overdose in my mid teens. And I subsequently got thrown out of school, because they said, 'That meant that I was going to be a problem to teachers and pupils and they didn't want me there.' [sniff] And that was when, I suppose, I did, finally get all the input from people who I hadn't wanted to see. I was made a ward of court. I was forced to see a psychiatrist, a social worker, a court welfare officer, a psychotherapist, and I never, you know, I never told them what was going on, because my Mum had this lie sort of ready fabricated and she told me if I didn't tell them why I had taken an overdose, they would, they would put me away.

 

Sara believes that white middle class people can't always understand Asian culture. (Played by an...

Sara believes that white middle class people can't always understand Asian culture. (Played by an...

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But yes, I just, I don't always think that middle class people can understand like, oh and, you know, white middle class people can understand. I mean for instance, like they would not understand Asian culture. And things like, you know, like in Asian culture it's kind of like you don't talk to people outside the family. You know, you don't let them know things, it stays in the family, and… I don't know, I think they, they are looking at things from what is normal from a white middle class person's perspective. And what might be normal for them will not necessarily be normal for me. You know, I mean for instance in this culture it's very much kind of individualistic, sort of go-getting thing, whereas in other cultures it might be more sort of collective community that's more important. I mean for instance like just giving an example, I don't really have very much ambition and in this culture that matters, because we are kind of brought up to achieve and succeed and have a career and be successful, whereas if I was growing-up in, I don't know, an African village or something, it would be fine for me to just, I don't know, you know, gut fish or something for a living and I'd still be part of the community and valued. I don't know, I just…

 

Sara says her mental health team were patronising and didn't listen; she didn't feel like a "free...

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I came out of hospital after nine months and I was sent back to where I was living and I was told I could only live there if I carried on taking the antipsychotic depo injection. And I found out later that that isn't legal either because there weren't any community treatment orders then. But I didn't know that at the time and I was very kind of scared of being forced into some kind of mental health hostel that, you know, I agreed and I took it. I don't know, they didn't really do anything, they would have meetings every now and then and they would just speak to me like, like I was a child. And, you know, just really, really patronising, like speaking to me like I was stupid. And I mean that is one thing, I think throughout my years of having mental health problems, that, you know, no matter how badly I thought of myself and how crazy and how fat and how ugly and whatever, you know, I'm not stupid, you know, I may not be as intelligent as them because they're doctors, but I'm not stupid and I don't like being treated like I am'

And even when I was out in the community it was like I was very much aware that I wasn't a free citizen and I couldn't just do what I wanted. That they were going to be, you know, kind of watching over me and, and asking me intrusive questions and I didn't really communicate with them and I think that made them think that I was more sick. And it was actually just that well, you know, I can't talk to them about anything that's going on, because they don't understand and they don't listen. You know, I would try with my CPN I would try over and over again to try and get her to understand that I had an eating disorder and I would ask her, 'But why am I schizophrenic? And I don't have these symptoms. And why are you saying this?' And it would just be, that, you know, 'Stealing food is irrational and psychotic,' and also things like, like cutting myself.

 

Sara's eating disorder is in remission, and although she feels a lot better and can function, she...

Sara's eating disorder is in remission, and although she feels a lot better and can function, she...

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And now I think, I mean obviously I am doing a lot better than I was in that I am working and, you know, well my eating disorder is kind of in remission and it is not like I never have thoughts about, you know, food and weight and stuff but I am a lot better than I was. And I'm able to cope better then I was. And I may get better, you know, even better in the future, I don't know, but I still, I mean I still have all the kind of low self-esteem depressing thoughts, like I don't think people like me'

I think I am probably depressed most of the time, still. And, but it's kind of like, it's not really, really severe, so it is kind of like I can function. So, I would say that now I am kind of like a functioning depressive. And I don't, I don't know, I don't really ever expect that I will ever be like kind of people who have never been depressed or people who recover and, you know, it has been my choice not to take medication for depression [sniffs]'

And, I think I, yes, I don't really enjoy things. Even things that I think I ought to enjoy I just don't, I mean I do have a laugh sometimes, you know, with like people, like colleagues and stuff and I am in a relationship. But I'm, I'm just, I'm not happy and I don't know why and I don't know what to do to put it right. And sometimes it just feels like it's too much hard work, just to keep myself treading water, you know, just to be functioning. And I think the difference is now is that I kind of behave better then I used to, And I think maybe that's, you know, in some ways it is because I am kind of better mentally, but in some ways I think it's also that I feel I have to behave in a certain way and, and appear to be normal, otherwise I'll, I'll end up in hospital again, or, you know, and I don't, I never, never want to go through that experience again. It was the most horrible thing. And I would rather be like, you know, in a low wage job and living a life of, kind of a dull life rather than back in the mental health system. At least I'm like a free citizen as it were, now. And I can pass for normal. Yeah, I think I pass for normal. Probably if people get to know me too well they realise I am a bit odd, or they might realise that I'm bit insecure about things. But I can probably pass for normal now, but I think that's probably as good as it gets.

 

Sara was offered CBT in hospital to convince her to agree with a diagnosis she disagreed with;...

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But it's not so much that even, it's just, you know, the fact that I didn't have it, and they kept saying I did, and that they wouldn't listen to me, you know, even when I could put together a perfectly coherent clear rational argument as to why I didn't have it, and they still, they'd made up their minds that was what fitted and that is what they were going to do. And I mean like they said things like, they would offer me cognitive behaviour therapy to persuade me that I was ill with schizophrenia and that I needed to take medication. 

Like that was the only way that they would offer me, they wouldn't offer me, like therapy for, it would just be so that I could learn that I really do have this illness that I keep saying I don't have. You know.

Was it put like that?

It was yes, it was like, 'Oh we could refer you for cognitive behaviour therapy and would give you insight and so to persuade you that you need to take your medication and give you an understanding.' And it's kind of like brain washing really'

I think trying to do it, trying to get rid of your depression by psychological work is quite hard, you have to work quite hard just to keep yourself, kind of just treading water. And all the cognitive behaviour stuff and the affirmations and, you know, doing some exercise to raise your endorphins and making sure you eat healthily and it's just like it's a job in itself, you know, and there are people out there who are just, like they don't have to do any of that, they're just normal, they can just enjoy life, and just like, they know how to talk to people and stuff, they don't have to like learn how to do it, and I just don't understand, and I think, oh is that possible?

 

Sara was distressed when the antipsychotic she was forced to take gave her facial hair,...

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Sara was distressed when the antipsychotic she was forced to take gave her facial hair,...

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And one of the side effects of the medication was that I started growing facial hair and they had no kind of understanding that that would be distressing for me, or that, you know, the huge weight gain was distressing for me, or that the fact that I couldn't manage to care for myself and that I couldn't go out do the things that I used to do. And it was kind of like, well you're sick now, this is your life from now on.

You know, and one time the nurse did say to me, because I said to her, 'Am I going to have to do what the psychiatrist says for the rest of my life?' And she went, 'Well, preferably yes.'

I had beard growth from the medication. I was just wearing people's cast offs because none of my clothes would fit me because I was so big. And one of the lesser known side effects of that antipsychotic medication is urinary incontinence and it is listed in the, in the book, the prescribing reference book, but it, I was never told that would happen and so I would, I would sometimes have accidents, which if you, because I couldn't wash, so I would just take my clothes off and throw them away and then put something else on.

 Yeah and I used to get beer cans thrown at me as I walked down the street and stuff and get shouted at, 'You need a razor,' and things like that which was. I think I had to get to the point where I didn't care, you know, otherwise I would never have left the house.

 

Sara says taking antidepressant would imply that her depression was caused by a chemical...

Sara says taking antidepressant would imply that her depression was caused by a chemical...

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And yes, something I did want to say was that, I like, have looked on the website and I have seen some people saying that they felt relieved to take medication because it felt like someone was saying it's not your fault, and you have got a chemical imbalance and for me, I actually think, if someone said that to me it would negate all my experiences that led to me becoming so depressed, if they just said, 'Oh well you well you've just got a chemical imbalance in your brain and'' 

I mean I can see the point why people might think that, you know, if they're told they have got a chemical imbalance that makes them feel it's not their fault and it is a real illness. But for me for somebody to tell me that and say, 'Oh just take an antidepressant.' I feel quite angry about that, because I think that, in a way I think I'm justified in being depressed I suppose. I think well, and I know that there's a lot of people who do have terrible lives and they don't get depressed and maybe I am not, I don't know, maybe there is some brain chemical imbalance but I just think. And I'm not really very good at explaining my experiences in a way that could make people understand why I would be so depressed. I think it's like only if you have lived through it, that you might understand. But I sort of think well, no wonder I'm depressed.

 

Sara finds middle class white professionals difficult to relate to. (Played by an actor).

Sara finds middle class white professionals difficult to relate to. (Played by an actor).

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I think I find it difficult anyway talking to mental health professionals because they do, even if they're not white, they are middle class, and I don't know I think probably as I felt a lot of my life, you know, like I went to private school when I wasn't like middle class and stuff and I have, I have got this thing about, I suppose I've got an inferiority thing, about, you know, people who are like clever and posh and stuff. I mean there wasn't anything wrong with her, you know, she was a nice enough person, it was just when I was assessed I had said that I had these eating problems, and I'd also said that one of the other thing I had was that I was convinced for years and years that I was really, really ugly. I mean nowadays I don't get it so much. I mean I know I'm not beautiful or anything, but you know, I am kind of average okay, fine, great [sniffs]. But I was really, really distressed at that point, about my facial appearance, I thought that I was really, really hideously ugly, and a lot uglier than other people, you know, and I'd said that. And there's plenty of other people they could have given me as a therapist, but who did they give me? This like kind of, I don't know, she was just, she was very kind of beautiful and thin and, and, I just sat there feeling really, really inferior. And I think as well because she is a psychologist, and I was a graduate and I kept thinking, 'But I should be doing what you are doing, and why am I sitting here in this chair?'

 

Sara suggests that professionals listen, not make assumptions, and realise that people with...

Sara suggests that professionals listen, not make assumptions, and realise that people with...

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They need to actually listen to the patient because I think what they tend to do is listen to everybody else involved and the patient is not taken seriously because they're ill and that is sick. So for instance they will listen to the family, they will listen to, you know, anyone like in my case, the manager, or the other residents where I lived, but they didn't listen to me, and I think the person themselves, you know, they, their experience as well, they're the ones who know how they're feeling, you know, and it's not about, whether other people think you are behaving well or not because it's your life, so. And I think it's really, I think it's really important for them to just listen to the patient, which I don't think they always do, you know, and listen to how the patient is feeling. So if a patient is saying this medication is not helping me, it's not making me feel good, then, you know, it needs, but also I think as well that, to understand that they, not everybody's problems are biochemical and that they don't know. 

I mean unless they actually sit down with somebody and go through their entire life experience then they can't just look at someone and think they've got these symptoms, this medication will, will do something to, you know, suppress the symptoms and make them more socially acceptable to other people. You know, I think that's something with me, that they didn't know anything about my life, they just took everybody else's word, 'Oh she behaves like this', like, you know, for instance, my Dad said that I hadn't wanted contact with him, and they therefore said, 'Oh that's abnormal and that's a sign of schizophrenia.' You know, do you want to know why my dad, why I didn't want contact with my family. It's just they don't ask these questions, they just assume. They make a lot of assumptions.

 Yes. I think it's important for people to have a choice over what, you know, what, what kind of treatment they get. I don't know I suppose to see people as individuals and not just diagnoses. And to understand as well, that people with mental health problems, they have like, you know, the same dreams and desires as everyone else. They're not like, oh because you have got an illness you're just happy to sit in a corner watching telly and, shuffling about, you know. I don't know really, that's it.

 

Although she's a graduate she's working in minimum wage jobs.

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I don't think I am capable of anything. I don't really have ambition or motivation. I work part time and I find that quite difficult. And, you know, I'm a graduate with a first class degree and the jobs that I do are minimum wage.

You know, not what you would expect someone to be doing and, you know that, I, I like them both, and you know, they're worthwhile jobs to be doing, but I kind of think that, you know, like, maybe if I hadn't been depressed that I could have done a lot more with myself. And then I kind of feel sad that I have to settle for less, because I have this thing that is with me and that I can't, I can't seem to shake it off'

I think one of the things that I have is a severe lack of confidence. I just don't have any confidence. I feel that I'm incompetent, I'm incapable, that I'm useless, that I can't do anything' And it's' I don't know whether it is true or not, but I feel that it is true and therefore I wouldn't even think of now applying for, I mean when I was on the dole I applied for all kind of jobs, because you just, you have to apply for a certain number per week, you know, it's what's available and you apply for it. But now I wouldn't even think of applying for it, a job that paid, I don't know, maybe what graduates are earning, because I would just think, well I'm not capable of doing that, I can't do it.

 

Sara recalls being diagnosed with paranoid schizophrenia instead of an eating disorder and says...

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And I got to hospital and this is the bit that I really, you know, I can't get my head round that. I was, they wouldn't have me in the house, because I was obviously, I was stealing everybody's food and I was out of control but they kept me in hospital, but they said that what I was doing, i.e. stealing other people's food and eating when I wasn't hungry was actually psychotic behaviour and they gave me a diagnosis of paranoid schizophrenia and started treating me with antipsychotic drugs. And, you know, I know a lot about antipsychotic drugs because I, [of my degree] and I read about the effects various drugs and you know, antidepressants, antipsychotics, so I knew that were really, really horrible drugs and that I didn't want to go on them. And I refused to take them at first, but you know, ultimately they put me on injections so I couldn't refuse and I was on section. 

 And nobody would listen to me. I couldn't get anybody to listen to me. You know, they didn't, they stopped, they didn't believe I had an eating disorder. They thought, initially they thought I had, but then after they got information from the people where I live about my previous acting out, they decided that I didn't have an eating disorder and I was actually psychotic. And I do still think that if I was a white middle class woman and I'd gone in there then I would probably have been treated for an eating disorder and not a mental illness. I suppose an eating disorder is a mental illness, but it is a sort of different one. And yes, I was in there for nine months on a section two and three and I was absolutely terrified…

I mean there was a, the psychiatrist who finally said that, “Actually I don't think that you are schizophrenic,” I think, you know, just him as an individual and obviously at the eating disorder place they were trained in eating disorders so they said, “Okay, your behaviour, you know, stealing food and everything to an untrained professional may have looked like you were psychotic, but a trained eating disorder professional who knows about the effect of starvation on the brain etc, etc would have seen that behaviour and understood it in the context of your eating disorder.” 

 

For Sara, self-harm was a way of punishing herself but now she feels her self-esteem is better...

For Sara, self-harm was a way of punishing herself but now she feels her self-esteem is better...

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In fact I felt like killing myself. And the only outlet I had for that, well I think the starving, it was pretty clear that my Mum was going to put a stop to that, she wasn't going to let me carry on starving and there were all kinds of threats, but the cutting was something that I could in secret. And it was a way of, I suppose, punishing myself. Sometimes, it was' a way of'  if she was screaming at me, and telling me what a terrible person I was and stuff then I felt, well if I am that bad then I deserve this. So, I would, I would cut, because I felt that I deserved it. She was telling me all these horrible things and she would never hit me. And I would think well surely if I am that bad I deserve to be hit and stuff. And so I would do it to myself. And also I think sometimes when I was angry with her, and obviously I couldn't do anything to her, so I cut myself'

I still feel like there is something wrong with me. Very much there is something wrong with me and I'm not like other people and I don't understand normal people at all. I don't understand why they enjoy things. I don't understand why people are motivated to work. Why people have ambition' I don't get it. I don't know. It's kind of like I am resigned to not really doing very much with my life, but then I think I get depressed because I feel frustrated. I think well why can't I do something? Why am I rubbish at everything? Why do I not have any talent? Why don't people like me? Why can't I have a group of friends? Why can't I just have a nice life?

I mean for instance for me, how I used to get my aggression out was by doing things like cutting and banging my head, you know, it's a lot more socially acceptable to go to the gym and run for half an hour [laughs]. And it does help you kind of get out some of your tension and frustration I think in that sense, you know, it is something physical you can do without actually beating anyone up or hurting yourself. So I think it does help in that way, yes.

Did you, I mean did you get any advice about dealing with cutting?

No, I think that' no I didn't get any help on how to stop doing it, I mean I think it just kind of came when I was, well I stopped being so angry, like after I was discharged and I was, you know, being treated for, what I actually had a problem with, and, and I didn't get specific advice for stopping the cutting, I think it was just generally just not hating myself as much, because I used to. I mean I am not saying that, you know, I think I'm great or anything now, but it's, it's kind of like I don't, well sometimes I do but I don't really have that extreme self hate and extreme anger with other people to make me want to do that. So I don't think it was specifically towards how to stop the cutting. I know some people do need that, you know, but for me, it was more like my self-esteem was raised enough for me not to. And occasionally I would get the thoughts, but I think because it has been quite a long time since I have cut, I don't act on it.

 

Sara thinks schizophrenia is more stigmatising than anorexia, which is perceived to be "a White...

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Sara thinks schizophrenia is more stigmatising than anorexia, which is perceived to be "a White...

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I think that anorexia is perceived as a white middle class disease and I do know about research that says that if you are from ethnic minority you are more likely to be diagnosed with an illness such as schizophrenia and you are more likely to be given medication. I think the class thing is important as well though I don't think it's just about being white. You know, I think the typical picture of the anorexic is someone who you know, is a kind of beautiful white person, very clever, and you know, I think maybe also middle class parents and maybe, maybe find it easier to negotiate the system, you know… And, I don't know I think I just didn't, I didn't look like the anorexic. I didn't, don't fit that, no, let me think. I wasn't, well I wasn't the typical anorexic like in terms of the profile of somebody who's got an eating disorder. I know nowadays eating disorders are more widespread and they can affect all kinds of people. But I think that, you know, before there's a certain type of person that they think that is the anorexic and, and certainly with the stealing food and everything, you know, that, if it was a white middle class person doing that they might think, I'm not really explaining myself very well am I? My brain has gone… I think if you look a certain way you are more likely to be taken seriously and you're more likely to be listened to. I don't know. I don't really know what else to say.

And do you think, I mean comparing schizophrenia and an eating disorder, I mean they're obviously quite different, very different. Do you think that schizophrenia is a more stigmatising label than an eating disorder?

I think it frightens people. I think there's a lot of, I mean like articles and newspapers about paranoid schizophrenics going on the rampage and killing people. And I think a lot of people were quite, you know, scared, like people where I live and stuff. I mean I think on the one hand like if somebody has got something like schizophrenia then you'll get two camps, you'll get the camp that says, oh well it is not their fault, because it's biochemical and all they need to do is take medication. And then you get the other lot who think that they are really like evil people.

And I'm not explaining myself at all, my head has gone… I don't think it is biochemical and all you need to do is take medication, or that you're a bad person, so it's one or the other. And I think eating disorders it's kind of like people can maybe relate to eating disorders because a lot of people even if they don't have them they do have concerns about their weight and food and stuff, whereas something like schizophrenia, especially when the media kind of really plays it up, that schizophrenics are like these dangerous people who go round killing people which is not even true, you know, a small minority do, but I know people that have mental health problems are more like to be attacked by other people, than actually go around attacking anyone, but people don't know that and they hear a diagnosis like schizophrenia and maybe some of the symptoms of schizophrenia such as hearing voices and being delusional and stuff and they can't really relate to that, whereas they might be able to relate to somebody, you know, feeling fat and overeating or under-eating or somebody feeling a bit down. They might not be able to relate to somebody thinking that there is a government conspiracy after them or whatever, you know. I think schizophrenia is quite a stigmatising label to have.

 

Sara found it difficult to wash and dress, especially when she quickly gained weight through...

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Sara found it difficult to wash and dress, especially when she quickly gained weight through...

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One of my experiences as well is that I became unable to take care of myself physically. And I'm not sure, I still don't really know why. I think, that when you do starve yourself, your brain is kind of, it doesn't work as, as well, and certainly before I started bingeing I was having trouble doing things like having a shower and, you know, I couldn't read the TV guide because I had no concentration. I was finding very basic things like doing my laundry, very, very difficult, you know, I would need help because I couldn't work out how to do things. And then when I started bingeing and gaining weight very rapidly and went on the medication I think I was just so, I put on weight so quickly, I couldn't work out how to dress myself any more because my clothes didn't fit me. I couldn't work out how to put an outfit together. I couldn't work out how to have a shower. I wasn't, it was like I was actually wearing a fat suit, you know, that somebody had just suddenly gone and put a fat suit on me, and I was sort of lumbering about, I didn't know how to. And I didn't take care of myself. I didn't wash for quite a long time I didn't wash at all. And of course, that just made them think even more that I had schizophrenia, because apparently that's one of the negative side, negative symptoms of schizophrenia is like lack of self-care'

One of my experiences as well is that I became unable to take care of myself physically. And I'm not sure, I still don't really know why. I think, that when you do starve yourself, your brain is kind of, it doesn't work as, as well, and certainly before I started bingeing I was having trouble doing things like having a shower and, you know, I couldn't read the TV guide because I had no concentration. I was finding very basic things like doing my laundry, very, very difficult, you know, I would need help because I couldn't work out how to do things. And then when I started bingeing and gaining weight very rapidly and went on the medication I think I was just so, I put on weight so quickly, I couldn't work out how to dress myself any more because my clothes didn't fit me. I couldn't work out how to put an outfit together. I couldn't work out how to have a shower. I wasn't, it was like I was actually wearing a fat suit, you know, that somebody had just suddenly gone and put a fat suit on me, and I was sort of lumbering about, I didn't know how to. And I didn't take care of myself. I didn't wash for quite a long time I didn't wash at all. And of course, that just made them think even more that I had schizophrenia, because apparently that's one of the negative side, negative symptoms of schizophrenia is like lack of self-care'

It was getting to the point where I was going to be thrown out of where I was living. I mean they had originally wanted to throw me out and then they hadn't because I had agreed to take the medication and then people were complaining because I smelled and, you know, my appearance, and I was just, I don't know I looked like a vagrant basically. And I didn't care any more either. I just stopped caring. I was so utterly depressed and I couldn't see a way out, apart from, and I thought there were three options open to me, either I go in a mental home like they want, or I kill myself, or I run away and try and live on the streets. You know, and I thought the best of those options was probably that I kill myself, because if I try and live on the streets, I'm not going to survive. And I don't want to go into one of these residential care homes. So I was planning to kill myself.

 

Sara started dieting to lose weight, but became obsessed with food and reached a dangerously low...

Sara started dieting to lose weight, but became obsessed with food and reached a dangerously low...

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And' yes, I'd started dieting when I left University but I left University quite overweight and I started dieting. And I got down to a normal weight and I realised that I still wasn't happy so I thought the solution was to lose some more weight. And it went on like that. I would lose some more and then I would think well I'm still not happy, maybe I need to lose a bit more. Until I got down to a weight which was very, very low and I was very seriously ill. But I don't think anybody realised because I was on like income support and I wasn't, by that point I wasn't seeing any psychologists or anybody. And so I was kind of on long term sickness and not getting any treatment, so nobody really realised. I mean people already knew that I was very thin, but, you know, I didn't really talk to them.

And I was just getting more and more depressed, and just completely obsessed with my weight, with food. And my entire days were filled with, you know, I would go out shopping for food and just, I would buy all the stuff that I wasn't allowed to eat and just keep it, so I had hoards and hoards of food. And everything I did every day was to keep me away from food. And I would go out walking. I would go to the park a lot, because that was somewhere that I considered safe because it didn't have food and my head was filled all day with numbers, whether it was weight or the calories or whatever it was. I got myself into a lot of debt as well. Credit cards, I would just go out shopping and like I would be a kind of, I think the starvation made me a bit manic and I would just go on like spending sprees and stuff. And then I think when I got to a really, really low weight, I think it was quite clear that I was dying. I would like pass out, you know, and I would just, and like my urine was coming out red and stuff.

 

Sara describes the "horrible" attitude of staff when she was in hospital. (Played by an actor).

Sara describes the "horrible" attitude of staff when she was in hospital. (Played by an actor).

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And they would say that I was hearing voices, they, you know, they made things up to fit the diagnosis. I had one doctor who said to me, 'Oh this isn't a bingeing hospital.' And I had another nurse who would follow me around and go, 'You're still eating.' And then the doctor who said, 'This isn't a bingeing hospital,' had then said that he hadn't said that. And, you know, who are people going to believe? A psychiatrist or a mental patient? So it was like they, they were treating me, you know, there was one nurse would like just push me out the way and say, 'Shut up. Shut up.' Because I kept saying, 'Please let me go home. Why am I here? I want to go home.' 

And they were, you know, they were quite horrible. But, you know, I would try and tell my Dad and he wouldn't believe me. And people wouldn't believe me because they were the professionals and he would say, 'Well they're psychiatrists, they're doctors, they've got twenty years' experience. If they say you need this medication then you need it.'

 And I didn't really, you know, I didn't have any one to turn to. One of my neighbours would come and visit me and she would say, 'If you don't cooperative with them then I am not going to come and visit you any more.' So it was like other people around me, sort of thought that they were doctors and that they were trying to help me, and they were doing their best. And they actually weren't helping me at all. They were making me worse and I kept saying, 'This is not helping me. It is making me worse.' But, you know, nobody would listen. 

And I mean when I came out after nine months in there, of just, you know, I was really scared of the other patients as well who were quite severely psychotic, a lot of them. And [3 sec pause] the whole, I think the whole ward situation I just found it very confusing. I didn't really understand what was going on. And, and I think their idea of whether you were getting better was whether was whether you cooperated with staff and you kept quiet and you agreed that you were ill and you needed medication and I never did. I was always kind of saying, 'Well, I am not schizophrenic. I don't understand why you're giving me this treatment.' And then they would say, 'That's lack of insight and that is denial. You've got no insight and that means you are even sicker then they are already saying you are if you don't agree that they are right.'

 

Sara says the staff were from different ethnic and cultural backgrounds and had a different...

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I mean, like for instance a lot of the staff on the psychiatric ward were from ethnic minorities and they were bloody horrible, so, you know, what can you say, people are people. [laughs] I mean they were, I think, as well that because some of them were like from different cultural background, they weren't British, they come over here, and their, their attitude towards people with mental health problems is not the same, like, I know some like British people are like that as well, but they are very kind of brutal, some of them.

You know, and I've actually, working in mental health as well, I've heard people talk about staff on the wards that they've been on who have come over from another culture and are working over here and they don't really understand British culture and that they've kind of been very, you know, sort of punitive and, and quite physically, you know, and not very compassionate. You know, just, just saying really horrible things to people, but, yeah, you know, so I don't think, I suppose in a way that's a great experience because it led me to believe that nobody is better then anybody else in terms of where they are. I don't think really, you know, I mean I saw Asian doctors when they were in hospital and they weren't any, you know, more understanding towards me then anybody else.

But do you think they were better able to understand your situation? 

Well no, because I think the thing with me is that like my parents are Indian but from the West Indies and then we weren't brought up in a like, you know, a traditional Asian household. Like, you know, I mean my Mum didn't wear saris or anything like that, we were brought up as Christians. So I think in a way, they kind of, they can't pigeon hole me, that's it, they were not able to pigeon hole me, so they didn't, you know, I wasn't a typical Asian and I wasn't like the white middle class person and. So I don't that, you know, them being Asian was, because a lot of the Asian doctors they were like the Asians from India, that kind of, and we're not like that, my family is not like that. But they we're not white British either so, I don't think that that was really anything to do with it. I think maybe, you know, it was just the individual. I mean there was a, the psychiatrist who finally said that, “Actually I don't think that you are schizophrenic,” I think, you know, just him as an individual and obviously at the eating disorder place they were trained in eating disorders so they said, “Okay, your behaviour, you know, stealing food and everything to an untrained professional may have looked like you were psychotic, but a trained eating disorder professional who knows about the effect of starvation on the brain etc etc would have seen that behaviour and understood it in the context of your eating disorder.” 

You know, but maybe it's, it's just that those people are not, they're trained to deal with, with illnesses like schizophrenia, bipolar disorder and if somebody doesn't fit their, maybe, you know, they're not trained in eating disorders so if somebody isn't very obviously fitting to that, you know, maybe they just don't. But I don't think it was particularly to do with anybody's background. I actually think that some of the ethnic minority staff were more cruel then some of the white ones, you know, so I can't say that.

 

Sara felt being in hospital was like being in prison and felt like a punishment.

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Sara felt being in hospital was like being in prison and felt like a punishment.

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You know it was just, I felt that being in hospital was kind of like being in prison really. It was like a punishment and that once you are in the system it is kind of like, they do treat you like you are a criminal, you know'

But I don't think that, I don't think the psychiatric wards are there to really kind of help people fulfil themselves and get, you know, fulfil their potential and move on in their lives, I think they're just kind of there, they're like containment cells and, you know, they're kind of there to really protect other people, like if you're a nuisance to other people. I don't really think they help anybody. I mean I did make friends with two people from the ward I was in. But like the majority were just like, you couldn't even have a conversation with them because they were so severely psychotic. But there were two people that I was friends with and, you know, one of them is kind of like your typical revolving door patient and as far as I can see, you know, it hasn't helped him at all. The other one, she is like, she has tried every single medication there is, and, you know, it hasn't helped her either. And' I think it's what, that it is very, very difficult to get out of there once. I think I was actually very, very lucky to get out of the psychiatric system, because a lot of the people don't manage that. They stay in the system. And I saw another health care professional. Who is not a psychiatric professional and this is after I had been discharged from there. And she said to me, I had written her letters about what had happened, and what was going on while I was in hospital, and what they were saying, and what they were doing, and she said to me that she had thought I would never, she would never see me again. She thought I would never get out of the system. And I think some people they do just get lost in it, you know, I mean I don't really understand why they did what they did.

 

Sara has found different supplements and herbal remedies helpful for relaxation, sleeping and...

Sara has found different supplements and herbal remedies helpful for relaxation, sleeping and...

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I've tried various supplements, vitamins and amino acids and I've tried homeopathy as well. I haven't sort of had a huge amount of success with that.  And then I've done various self-help books, you know, and some of them have been more helpful then others.  With supplements, I think they have helped me to an extent.  You know, there's one I take at night time that does help me sleep and it's supposed to raise your serotonin levels.  I don't think they have like made me really, really happy or anything. But I do I think they have helped to an extent, that I'm not as bad as I was. I don't get, you know, I used to be, in my really, really depressed days I would just be like, you know, really, really tearful over really minor things, like now I get that when I am pre-menstrual. But, you know, the rest of the time I don't sort of feel like I want to cry all the time and stuff. It's only really just before my periods. I think they helped to that extent that, you know, I'm not as sensitive to things as I used to be.  And, you know, I'm not as low…

But I don't, I mean I read a book about, you know, how you can take supplements to help your mood and stuff and I haven't experienced the kind of, sort of magical cure that it promised, and I still have difficulties.  

Do you know the names, can you remember the names of the supplements that you take?

I take 5HTP and DLPA and tyrosine and I take omega 3 as well. Well that's kind of general health as well and I take St John's Wort. I've only been taking the St John's Wort since I hurt my back though because I got very, very depressed then.  Yes and just like multivitamin and stuff. But as far as I'm aware from what I read the DLPA is meant to like help you deal with life's ups and downs, the tyrosine is meant to be an energizer and the 5HTP is meant to help your serotonin levels. So, yes.

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