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Mental health: ethnic minority experiences

Jay - Interview 27

Age at interview: 42
Age at diagnosis: 34
Brief Outline: Jay, 42, describes herself as Black-British. She was diagnosed with schizoaffective disorder aged 34 and now works in mental health. Jay's voices say mainly negative things, but two voices encourage her and give her tenacity and drive.
Background: Voluntary development coordinator, single with 2 adult children. Ethnic background/nationality: Black-British (born UK).

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Jay, 42, describes herself as Black-British. She was diagnosed with schizoaffective disorder aged 34 and believes her mental health problems stem from trauma she experienced as a child, including racist bullying. Jay says she developed other personalities to deal with these events, including an angry, violent persona to protect herself. Jay says she always felt like she didn't fit in and began mixing with “dodgy characters” and witnessed murders. To blank things out, Jay drank alcohol and smoked weed. She thinks that smoking weed contributed to her psychosis and paranoia. 

When Jay became unwell, says stopped functioning, stayed in the house for 2 months without seeing anybody, and stopped caring for herself. Her sister called a GP and the early intervention team were sent to Jay's home. Jay went voluntarily to the referral unit, because she was told if she refused, she would be sectioned. After 5 weeks, Jay went home and started attending a day centre until she got a voluntary placement in a charity shop. This led Jay to get a part-time job in a shop which she found difficult at first, which led to another job in area she was interested in. Jay says she became unwell a second time because of the difficult relationship she had with her colleague, and without a community psychiatric nurse (CPN) to support her, she had no one to talk to. Jay's daughter, then aged 13, noticed she was unwell and informed the GP who referred Jay for counselling. 

Jay has many different voices in her head all the time, mainly saying negative things. Jay has lost some the voices in the past 5 years, but has to work hard to manage the others because they can tell her to do dangerous things. Jay believes she will probably always have some voices. Jay also has visual hallucinations; she sees animals and insects. To keep well, Jay writes poetry, tries to keep a balance in her life and pampers herself. Jay thought she was unique until she met other voice-hearers who have similar coping strategies, for example, talking to and reasoning with their voices to ensure they don't become disruptive, and learning to keep what they say to herself and not react in public. She also discovered that many historical figures were voice-hearers.

Jay has tried different kinds of medication and experienced many side-effects including lactation, drowsiness, weight gain, dribbling, staring and muscle twitches. Jay has been taking Quetiapine for 8 years and the only side-effect is sedation, which makes it difficult for Jay to get up in the morning and causes difficulties getting to work on time. Jay's daughter used to be her carer from the age of 11. She would bathe and comfort her, do laundry and shopping. Jay says she's the best thing she ever did with her life.

Jay says services were indifferent to her being a Black woman and had nothing that she could identify with that made her feel welcome. Jay says her counsellor - a white Irish woman with a person-centred approach to counselling - was excellent because she allowed Jay to explore her feelings and make decisions without judging her. Jay's message to professionals is “see a person, not a diagnosis”.

Jay supports people with mental health problems to do voluntary work. She says this role helps to keep her well. When Jay became unwell in her current job, people treated her differently when she returned to work. Jay's employers now know about her mental health and they have an arrangement where Jay arrives late to work, she works late to make up the time.

Jay is happy being herself. She says she has tenacity and drive, and at least two of her voices encourage her. Jay says that regardless of what you're experiencing, there will be someone else who has been through the same experience, and whatever it is, it can be overcome.

 

Jay says there was nothing for Black people at the day centre she attended.

Jay says there was nothing for Black people at the day centre she attended.

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And there was this woman there and she was loud and she often called me, 'Darkie' and things like that. She was a lot older, you know, the old school type mentality. And because I never spoke a lot, there wasn't the defence from the staff that I would expect, until a nurse heard it and [sniffs] she addressed the person's behaviour. But up until then it was just a given, 'Well, Jay don't speak anyway, so it doesn't matter if you call her whatever you want to call her.' Or maybe that person was doing it to see if they could get me to talk. I don't know. But that was, that was particularly horrible. 

 I think the, the experience of being part of the day service care in [the area] was discriminatory against women, against black people. There was nothing. I, I, I just, I went to the day centre and I just thought, 'Why am I here? There's nothing that interests me. There's nobody here who I can identify with. There's no activities that I'm vaguely interested in. There's nothing. So why am I here?' But, you know, I kept getting calls and, 'You've got to come, and you've got to come, and you've got to come.' And so I just kept going because I was told to go. And, you know, I was, I was in that mindset where I'd just do what people told me to do. Because I thought, 'Well, perhaps they know better.'

 

Jay says whatever you're experiencing there is someone else with the same experience and however...

Jay says whatever you're experiencing there is someone else with the same experience and however...

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I suppose really' [sighs] I wanted to just say that it doesn't matter what you're experiencing, there's going to be someone else who's having that same experience. It may not be in the exact same time zone or entire way, but there's someone. Because I thought I was quite unique, in a horrible way, but unique all the same. And over the last five years I have discovered that I am absolutely just a number of people who've had similar experiences, come through life, you know, dealing with things the way I have, ended up in the mental health system, you know, done the rounds, you know, dragged themselves up and started work and still living and breathing it. I'm not, I'm not that unique. There is always somebody out there who's going through the same or similar as you. And that it doesn't matter how hard it seems, it actually can be overcome. You just have to want it, want it more than it's, more, more than anything. Because it's actually easy to stay in the mental health system, because nobody expects anything of you. You can just sit there and vegetate. Because it, it's a lot easier. It's boring, but it's easier than fighting and clawing your way back up and standing up and saying, you know, 'I might have mental health, but I deserve respect like everybody else. And I am a member of society who has the right to go where I please and, and do as I please like everybody else.' It's harder to do that, but it's way more rewarding.

 

Jay says to professionals: "Stop seeing diagnosis, see people".

Jay says to professionals: "Stop seeing diagnosis, see people".

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It's like what we say on the project, and it, it really is the ethos of, of how we work, 'Stop seeing diagnosis. See people.' It's the bottom line. If you base your interaction with another human being on what somebody has said they are, you're going to fail, you're going to fail that person. Because you need that person to show you who they are. Then if you want to read what somebody said about that person when that person spent ten minutes in front of them six months ago, has got to say, then read it, read on. But don't allow it to cloud your ability to see another human being. Okay, some people can be quite severely disabled by their condition and they can have quite extreme illness or, or, or manifestation of their illness, and I accept that. But still you need to see a person. Because I have people who get labelled as being disruptive etc and so forth based on the fact that they're loud and they're colourful and they're quite overpowering. But that's their personality. It's not their illness. But then these traits are likely to be seen as people's illness, not their personality. Not everybody's the same. Just because somebody wants to wear seven different colours in their hair, that doesn't make them antisocial or over expression of their self or whatever they want to say about that person. That just makes that person an individual, like to be an individual. If she had 10 million she'd be eccentric. No one would say that she was mad. They'd say she was eccentric. So it's as simple as that. Just see people before you see diagnosis. Diagnosis was never designed for you to make a judgement on a person. It was designed to make a judgement on medication, not on people and, you know, what services they should or shouldn't access. 

You know, I've seen people come in my door who have got depression and who are on GP care and they're far more disabled than someone who's registered to have paranoid schizophrenia. Do you see what I mean? It's, the, it's so fluid, it's absolutely fluid. And the depths are unknown. It doesn't matter which direction you go, the depths are unknown. So you can't just decide because that says schizophrenia and that says manic depressive or bipolar or whatever it says. I mean schizoaffective disorder. Well, what the bloody hell's that? I mean' I accept it has been given to me. 

I don't often get a present, so I decided to take it many moons ago. But what does it mean? What does it really mean? It can mean near enough anything. It's like a, a non-description as it were. Basically what it means is, 'I don't know. I don't know. I don't know.' But that's fine if it helps people to understand me to a certain degree. But that isn't me. That diagnosis isn't me. And the amount of people now I've met who's got that diagnosis, I don't know how we fit in the same box. I don't know. Just based on what? You know, our experience of mental health has been different, medications are different, you know, walks of life, backgrounds, different, general temperament. It's all different. But we've all got the same diagnosis. I was thinking of having a schizoaffective disorder party, and you have to bring your diagnosis for entry, make it special one day [Laughing].

But, yes, it's, it, that, that is my constant message to mental health professionals, 'Don't see diagnosis. See people.' Once you see people, you're going to actually get a better interaction with that person. Because as much as you sit there as the professional, that service user can see what you think of them. Because your body language gives it all away, all away. The tone in your voice gives it all away. If you're scared, it gives it away. If you're full of yourself and, it gives it away. You just give yourself away. Because there's one thing you learn to do as a mental health service user is rea
 

Jay describes various side effects and felt "dirty" because one type of medication made her...

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But I've had quite a few different medications that are supposed to keep my mood at a certain level. But it doesn't always work like that. I think the effects of medication has been my biggest stumbling block, because it's so public. You can't hide it when you're lactating, because you just don't know when it's going to happen. And you could just sort of brush past something and then you're all wet and you feel dirty in a sense. You just feel completely dirty, even though it's not a dirty thing. But you do feel dirty. And then, you know, when you, I had one that made me dribble. And, oh, my God, it was just awful. Everywhere I go I was, constantly had a tissue there [holds hand against her mouth] in my hand, always at my mouth. It was awful. And then there was the one that, I can't even remember half the names of these things, the ones that just actually made me do this [stares] all the time. I'd be like, oh, caught in the headlights the whole time. And then of course there's the one that makes you sleep all day, and the involuntary movements. I went through all of it until I just said to my GP, 'Look, there has got to be something.' Gone back to the consultant and he put me on quetiapine.

Now I've been on that now for seven, eight years and it's, it's fine. The, the worst part of being on it is that it sedates you heavily and it takes many hours to, to wake up from being sedated. So if you was to, to be at work say till 6 o'clock and you come home at 7 and you kind of potter around like you do, doing dinner or whatever, having something to eat, an that, you'd have to make sure that you took your medication by 9, 10 o'clock, because if you don't, you are not going to be able to wake up until 9, 10 o'clock the next day. And if you're going to work, 9, 10 o'clock is not the time you have to get up. You have to get up at 7, 8 o'clock. So it can cause a lot of late mornings at work. But that's just another story.

 

Jay believes her schizoaffective disorder developed as a way of coping with her upbringing and...

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The realisation that my parents didn't particularly like each other, at about 13, was quite traumatic for me. Because they had a great big row and lots of awful nasty things were being said between the two of them. And it was this big awful scene that I'd never experienced in my life and I didn't know how to compute it. [Noise in background] It just, it just didn't compute, it didn't make any s-, I didn't understand it, it didn't make any sense. There was screaming, there was throwing things, there was harsh words. You know, my sister was crying. And I'm just kind of sitting there thinking, 'This is awful,' and not quite knowing what to do, apart from, 'If I get to hug my dad, then it will be better and he'll calm down.' Yes, that was a very traumatic time. 

I think, prior to that I think, just before that or just after, I can't remember which way it went, my mother informed me that the only reason that my name is as it is, is because my dad had two girlfriends called what is really my full name which is on my birth certificate, Joyce. So she decided to give him a Joyce. And lo and behold she had a girl and she named me Joyce. And my dad fell in love with me and pushed her away even more. And so we had an extremely strained relationship. To the point that if my mother wanted my dad to do something, she'd ask me to ask him because he would say, 'Yes' to me and not to her. And it has never changed right to this very day, that relationship. But me and my dad are very, very close. 

That in itself was traumatic, that she, basically he told me this story where it wasn't that she wanted me, she wanted to get her own back. She wanted to have something to hold on to my dad as opposed to having a child to love and nurture. So I was kind of on a left foot most of the time with her.

 I was, when I was, I think I was, must have been about, I must have been about 5, when I had walked into a shop like we always do and I took a bag of crisps off the shelf. And my sister didn't see me take the bag of crisps off the shelf. I just walked out. I was 5. This is what always happened. They gave me a packet of crisps off the shelf and we left the shop. The whole bit about paying, I didn't know that bit. But anyway the shopkeeper, you know, stopped me, you know, 'What are you doing? I'm going to tell your mother.' Back in those days he knew who my mother was, not like today. And he did. He, he, he came round and he, he told my mum that I, I had stolen a bag of crisps. And so my mother beat me to an inch of my life with a belt and welted my skin with a belt. And then she put me in a hot salt bath and I was screaming my head off. And my dad came in and realised what she'd done and punched her, and she lost her two front teeth. Which she then, she's always had to wear dentures because of it. And, you know, this woman reminded me of this at least once a month, all my growing-up life. And that whole relationship was a trauma as, in itself, because I had to develop many defences against her. Like I think now I have a problem with eating, because of the way my mum behaves around my eating. I didn't want to eat something that she put for dinner and I sat there for hours and it never went. And the next morning it appeared and I never ate it. And the next evening it appeared and I never ate it. And then she forced me to eat it, force fed me. And I was sick and she made me eat it. And so my relationship with food is very strange up to this day'

 I was pretty well I think, looking back, growing up. I had some interesting experiences that I perhaps hadn't given as much, I don't know what the word is, I hadn't, I hadn't given it as much notice or consideration as I should have done and that they were traumatic experiences that my mind dealt with
 

Jay had a counsellor who she thought was "rubbish" and another who was "excellent"; she also did...

Jay had a counsellor who she thought was "rubbish" and another who was "excellent"; she also did...

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So I had a counsellor, who was absolutely rubbish, who then told me about a BME counsellor, who was equally rubbish, who then led me on to another counsellor, who was excellent. And she was a white Irish woman and she allowed me to explore my feelings. I think that's probably the best way to put it. She never actually ever said that much, I have to say. But when I started to feel some kind of understanding and recovery, I talked to her about what type of counsellor she was. And she said, she must have told me right at the beginning but I can't remember, she said she was a person-centred counsellor. And I thought, 'Wow. This is really, really good.' Because for the first time in all the so-called care that I've had somebody is allowing me to make my own choices, come to my own conclusions. And they're not telling me that it's wrong or it's right, they're just allowing me to explore. And, and in some ways, you know, it's so subtly, but forcing me to think things through. Never giving me the answer to the next step. Allowing me to think about what could be my next step and what's the pros and cons of my next step and really thrash it out. And maybe, you know, there'd be one question for a session and, and that's all we'd ever get to by the end of the session, just coming to grips with what the question was, sort of thing. 

And I had counselling for nearly a year, every week, one hour, and it was fantastic. And she was a volunteer. So then I decided, 'I'm going to be a counsellor. I'm going to be a counsellor.' And I went off and found an Introductory and a Certificate too and I started this person-centred counselling. And it was probably the worst thing that I ever did, because being a person-centred counsellor requires you to look at yourself. And looking at myself was not always a good idea, because I often didn't like what was revealed to me when I started really looking. So it was a struggle to finish this course. And I had lots of challenging conversations with members of that group, that training group. And the tutors were fine, but it was really hard work. So by the time I got to the end of the certificate I decided I didn't want to be a counsellor, because if this is what the certificate feels like, God knows how hard the diploma is going to be. I don't think my mind can take it. And all my friends would just have a field day. And I think they did have a field day with the whole concept of me delving into my head. I didn't often do that.

 

Jay says services should cater for people from different backgrounds as part of their normal...

Jay says services should cater for people from different backgrounds as part of their normal...

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When someone comes in and they see something or feel something that is familiar to them, it helps them to feel comfortable and relaxed. And then your interaction with that person is better. They come away with something more. And this is what services don't do. They don't, it can be as, simple as a smell. I've had people come in here and, when they're doing the training and the, and, and the caterer comes. And the caterer comes in and, and he brings rice and peas. And a man walked in, and he said, 'Boy, smell like home.' Do you know what I mean? Something as simple as that. We've had like things being cooked in the kitchen. And, and, and people, like this Indian lady, she came in and she goes, 'I can smell it.' And I said, 'What?' And she goes, 'A tikka.' And I go, 'Oh, is it a nice smell?' She goes, 'Yes, it reminds me of my childhood.' Do you know what I mean? It's these little things that can make somebody feel like, 'I actually belong here. They have some kind of insight into my world.' And they appreciate it, moreover they appreciate it. And I think that's what's missing. 

 It's hard, it's not, don't get me wrong, it's not an easy thing to do. Because we spend an actual, quite a lot of money on trying to achieve that in the project. It's costly, but it's worth it. Because then that person, who may be Asian, Chinese, African, Jamaican, some kind, other West Indian country, wherever they come from, will go away with this really warm feeling about your service or your project, tell somebody else, that comes in, and it goes like that. Word-of-mouth is the best advertising you can do. I stopped advertising for my project a year ago. There's no point. People just walk in off the street. 'So-and-so told me.' I don't need to do it. People refer from the mental health service, OTs and doctors, GPs now, everybody. So you, you've got to let your reputation speak for yourself. And that's by creating a service that you started, started thinking about everybody. You can't think of every single human being, but you try and, and think of a service that says, 'Okay, we're going to create some catering for a, a particular group. We're going to have a rota of catering where every time that we cater we make sure that we've got tea, coffee, hot chocolate, herbal tea.' Right? Because a lot of older black people don't drink tea and coffee. They eat, drink hot chocolate. And then some of them have ditched all of them. And they, they like their little camomile tea. The man tell me, 'You got camomile tea?' I said, 'Yes, we have some camomile tea,' you know. And, and it just makes them feel welcome, you know. 

If you're going to do some sandwiches, make sure you do some chicken and whatever and whatever, but give them a little hard dough bread with some cheese. Do you know what I mean? Put some samosas on the side. Put some, you know, satay chicken. Mix it and blend it as a norm. It's not a special occasion. You know, don't tell me you're integrating people and you've got an integrated service because you have a Caribbean night. You're still segregating people to one night. That means, 'On that night I'm welcome, but any other night I'm not welcome.'

 

Describes how her daughter's role as her carer began when she was 11 and has changed over the years.

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Describes how her daughter's role as her carer began when she was 11 and has changed over the years.

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And you've mentioned a couple of times about your daughter and the support she gives you. And, and actually you said that, you described her as your carer?

Yes

When you talk about her as your carer, what, what does that mean?

When, do I call her my carer now? I suppose in a sort, in a sense. But when she was younger, she came back to be with me after I came back out of hospital when she was 11. And at 11 she would get me in the bath and get me clean and make sure I didn't cut myself with anything. Or, she'd make dinner, she'd do the laundry, she'd do shopping, everything. She would care for me. And when I had the screaming banshees at night she'd hug me and tell me, 'It's going to be all right, mum, it's going to be all right. There's nothing there, there's nothing there, there's no one there. It's just me and you.' And give me hugs and kisses and tell me she loves me. That was all her at 11. And now she's 18, actually not much has changed. [Laughs] Not that much has changed. She's pretty much still the same, but she doesn't have to do like the hands-on care. It's more about if I've come in and I'm feeling quite stressed because of the day or, or something, she will sit with me. She will, she will recognise before anybody else if I'm wobbling. And she will stop whatever she's doing to make sure that I get over it and that I'm not having to face whatever I, I'm distressed about. She will try and put herself in-between me and whatever it is until I've had time to work it out. And, actually her favourite saying, 'Mum, work it out. You always work it out. Give yourself time to work it out.' And, you know, she always says that to me now. And that's how she still cares for me. 

She's, it's the best thing I ever did in my life. In all of my life, it is the best thing that I ever did. Even though when she was born I was absolutely petrified and I didn't have a clue how I was going to bring her up to be a normal decent human being. Because I already knew that I weren't normal. So I didn't know how I was going to do it. And despite me she's a well-adjusted young person, you know, she's at college, she's level-headed. I've never had to deal with any of these crazy teenage behaviours. It doesn't even compute.

 

Jay says she hears her voices constantly and they say mostly negative things, apart from two...

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Every morning I'd get up and everybody says, 'Good morning' and most of the voices in my head and the ones that sit outside my head have absolutely nothing good to say. Barring two of them, but they don't get much of a look-in. The rest of them, I just have pure negative things to say, 'Oh, you look terrible. Look at you. You're fat, you're overweight. You've got spots. Oh, you've got nothing to wear. Just lie there for a little while. Put the television on.' And then, 'Oh, just relax. You're just relaxing for a little while. Just another ten minutes lying down.' And then it would be, 'Oh, you've got to get in the bathroom. Oh, can you be bothered to wash? It takes too long to have a shower. And, you know, perhaps you could just get dressed without having a shower.' And it's just this whole thing that goes on every single morning. You'd think I'd get used to it, but I don't. I mean some days it's quite upsetting, and some days it isn't'

So I, I go on with my day with, I actually thought that I was the only person who heard voices all the time. Because all the films and everything that I had read about it talked about hearing voices at particular times, not hearing voices all the time, as in there's a constant presence there all the time. So I kind of went round for a long time believing it was only me and I was that unfortunate person that it happened to all the time, because I was unlucky like that. Until extremely recently, last, no, the beginning of this year really, I decided that I was going to join a hearing voices facilitators' group, where they were going to teach you how to facilitate groups for people who hear voices. And I didn't need to know how to be a facilitator, because it's part of my job, what I do now. But I was very interested to meet other voice-hearers, because I've never met a voice-hearer who was operating quite well, that their voices weren't disrupting their life. It's just a part of their life like it was a part of mine'

And, you know, kind of my voices aren't all bad. You know, the majority of them are a bloody nuisance and chat complete twaff most of the time, but I can filter them out. And, but there's a part of me, there's two voices that encourage me, that drive me, that refuse to let me see myself less than anybody else.

 

Jay often sees "creepy-crawly things" and animals, and it can be difficult to distinguish between...

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And, and the visual hallucinations are killers. I'm really good at them now. Because I can actually say, 'The likelihood of a tiger being in my front room is extremely slim. So if I see one, it isn't there.' But a cat now can be slightly different. Because I tend to see animals and spiders and snakes and, and creepy-crawly things. Now everybody has that to a certain degree. They might, at the side of their eye they might see something crawling or they think they see something crawling. But I will see it crawling, I will look, I'll blink, I'll turn away, and it'll still be crawling. 

 But there was one particular day, it was so funny. Bless her heart, me and my daughter's sitting down, she's lying on one sofa, I'm lying on the other, watching telly. And I'm kind of watching her and I see this spider coming down over her head, this big horrible spider. And I looked and I went, 'Oh, for goodness sake, there's no bloody spider. Ignore it.' Looked again, 'Oh, go away.' And she goes to me, my daughter goes to me, 'What?' And I said to her, 'Oh, I'm seeing things again.' She goes, 'What?' I said, 'I can, there's a spider coming down on top of you.' She, 'Aargh,' she jumped up, and she ran and she's, jumped on the table. And it was real. I couldn't stop laughing, I, because I was just convinced it wasn't real, so I just ignored it. And this great big horrible hairy thing, do you know she kept it in a box for weeks? She said, 'Look, it could have crawled on me, it could have crawled on me.' [Laughs] She just kept it. It was this, but I just was convinced it wasn't there, it just wasn't there. So I go through this thing quite often, seeing things that are, are not there and coming, just coming to the times where I actually don't flinch now if I think I see something crawling because I expect it not to be there. So sometimes when it's real and it really is there, it's the second glance that I realise, 'Oh, there's something really there,' kind of thing. But sometimes it's funny, they laugh at it, sometimes it is really, really funny. And other times it's completely distressing, because you just can't sleep. And, you know, I like to sit on the floor and cross my legs and watch TV. And sometimes I'm so paranoid what might be crawling on the carpet I have to get up.

 

Jay says she wouldn't want to be anybody else and feels that not all her difficulties can be put...

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But, yes, it's been interesting.  I have absolutely no desire to be anybody else than who I am, because who I am is quite good. The greater part of it is quite good, because I've learnt to manage it. There's wobbly bits, but who ain't got wobbly bits, you know, in their life and in, in their confidence and in, you know, their aspirations? Everybody has it. And I think that is the biggest learning curve that I've ever gone through in terms of my experience of mental health is that not everything is about my mental health. Because life is full of woes and problems and issues and challenges. And it's not all about my mental health. Sometimes it's just about life. And, yes, I think that's the message. Sometimes it is just about life. And mental health is part of your life, but it's not everything, it's not everything. There is a lot more of you than just your, your condition and what makes life difficult because of your mental health. What about your talents? What about your personal aspirations? What about, you know, how you make other people feel around you? You know, what about the greater world? Well, it's all well and good saying, 'Woe is me. You know, mental health and ra, ra, ra.' But what about some of the atrocities that are happening in the world? What are you doing to effect change? Because you can't only blow your trumpet for your own cause, you've got to, you've got to get out there and be counted, you know. I suppose it probably sounds a bit, I don't know what the word is, but a bit whatever. 

But, you know, it's, it's about a bigger issue than mental health. Yes, we're discriminated against, we're stigmatised against, but there are other things in the world that are terrible too. And are we going to stand up and be counted generally as a human being, as opposed to just standing up and being counted as someone who has mental health? I'd rather someone say,'Oh, yes, and Jay was crusading against an injustice about whatever. And she has a mental health condition,' as a secondary, rather than the first. 'Jay manages a project because, you know, she has a mental health condition.' Just, 'Jay manages a project and she helps people' rather than that, because that's still kind of stigmatising me in a, in a way.

 

When she was in hospital, she didn't tell anyone that she heard voices, only that her "head was...

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I started to talk after about a week. Still didn't understand why I was there. But I did know that I heard voices, but I wouldn't tell them that. I'd just say my head was noisy. And so that I always kind of knew somehow, somewhere, that if you told someone that you heard voices, they'd lock you up. So I was not going to say that'

And my daughter, being the carer, was the only person who cared enough to notice something wasn't right, to then tell my doctor that, 'She's not right. Something's wrong.' And for him to then not refer me back, you know, to, to go into hospital, but to actually look for some counselling for me that I could have s-, a forum to talk. Even though I still didn't tell anybody I heard voices. I just said my head was noisy and I got so confused and I can't filter out conversations. I still find it difficult now.

 

After she became unwell in her new job, she made special arrangements with her manager. She also...

After she became unwell in her new job, she made special arrangements with her manager. She also...

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But in terms of working, as a person who has a mental health condition, I've been in my job three years now. The first year was quite easy. It was new, it was, it was fresh, it was building. I was so busy I hardly ever saw staff that I worked with because I was constantly out in the field talking to people etc, building the project. Coming up to the end of the year, then there were, there were problems, there were problems. I think I found it harder that somebody would personally attack me the way I am as a person than the work that I do. Nobody had any complaints about the work that I did, it was character assassination. And considering I took so long to build this perfect me that I was completely happy and contented with as a person, to have someone sit there and, and rip that to pieces, or attempt to rip that to pieces, was extremely disturbing for me. And it did cause me to really rethink, 'Well, you're not past it. You can become unwell again.' 

I'd actually thought that I'm past it. I'd, I thought, 'Right, I've sorted that one. I've conquered that. It's sorted.' I take my little pills every day just like everybody else. If you had cancer or diabetes or whatever, you'd pop a pill. I pop my pill and I'm good. And then all this things started happening and I realised that my health was not so secure and in the bag, and I could become unwell if I allowed external factors to really get into my head. Because once they got into my head, all my voices just went bonkers. They had a field day. 'See, it's not only me saying it. Look, everybody else is saying it,' sort of thing. So that was interesting. Becoming quite ill and having a lot of time off work was interesting in terms of how people viewed me. On returning to work, unlike most illnesses that you might get, part of my recovery was to do what I normally do. So I normally go to work, so, 'Go to work.' As opposed to you're still not 100 per cent, so you stay home. But in order for me to recover I had to start doing what I normally do. Which involved coming to work, which involved coming to work in quite a doped-up state and not being as coherent as I normally am, and having people just ignore you, like you wasn't even there. That people could actually come to your desk and pick up a piece of paper and actually do it as if you wasn't there, was quite amazing to me. 

That my place of work lacked a certain level of understanding. I mean we overcame it, but it was there. This desire for me not to be around because people didn't know how to take me. So it would be better if I stayed at home until I was better. So once again, 'let's just tuck the mad person away because they're making me uncomfortable' type scenario. And I must admit, it didn't help me to speedily recover, having to, to deal with that.

But I spoke to my manager about it in length, and we had to work it out. Because I thought to myself, at that point strangely enough it gave me the fight to recover, because it was an injustice. And one of my voices that are extremely strong cannot stand injustice. And she will kick my butt out of bed to try and effect change because she can't stand it. And something forced me back into work and, and challenging negative behaviour and stigma and forcing people to fear, face up to their fears and admit their fears, so that it can be talked about. And we got over it. It didn't happen overnight, but we did get over it. But it, it really did show me that, in 2006 as it was at the time, that these things are still going on. And you'd think that with all these equal opportunity this and DDA and everything else, that people wouldn't dare behave in such a way. But they do, they do. And it, it was like, 'My God. Wow. I can't believe it. And number two, it's actually happening to me.' It wasn't happening to somebody else, some
 

It helps Jay if she makes time for herself and for her voices; she also found it helpful talking...

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 I think I have, I have my things that I do that only I can enjoy. Like I have my nails done every month, it's my time to feel nice. And I sit there like that, and my friend knows not to speak to me. I just like to enjoy my experience of someone pampering me. And I have my feet done. 

And while, while that is expensive to do, but I do work, so that's why I do it. But I think everybody should find their something. I mean lately I've been giving up my pedicures, because I'm teaching myself to do my own pedicures again, and I'm going for massages, neck, shoulders and back massages to kind of take some of the knots out and stuff like that. And I started doing that because I quite like it, and going for infrared sauna and that sort of thing because it's kind of, nobody can enjoy it like me. And that half an hour, hour and a half is just for me. And in, in order for me to keep myself on, on that equilibrium, I do that religiously. Else what the hell am I working for? Just to pay bills? No, there's got to be something. I am a clothes-aholic, but I've calmed down. That used to be number one, but that can be very disruptive. So it's not a good one, it's not a good one. 

 I s-, I find that if I make time for my voices, a time where I call it a mute conference with myself, if I make time every month, or every week if I'm experiencing a lot of disturbance from them, to hear what they're saying. Sometimes they have valid comments, sometimes they don't. But to hear what they're saying and to talk myself round to the belief that I am right and what they're saying will actually harm me and it won't cure whatever issue they say it's going to cure. Because they're kind of like the Devil, do you know what I mean? And I can understand when people say, 'The Devil's telling me to, the Devil's telling me to.' Because it is, it is that kind of, in order to make you feel better you tell me something that, to do that is going to make me feel pain or cause death even, you know. So it's, it's giving, giving time out for that along with your own pampering type thing that, it might not even be something like that, it might be you like to paint. Give yourself the right to have three hours to do your painting even. Simple as that. 

And the other thing is that when I recognise that something or someone is causing the balance to shake, I address it at its very earliest point, to alert that person to the fact that, 'You are doing this. It's making me feel like this, and I need you to stop. If you cannot stop this kind of behaviour, then you're not the right sort of person to be in my life and you have to go.' And I tell people this. And some people think, 'Who the hell does she think she is?' No, I'm me and I'm protecting me. This is what I need to do to protect me'

So I went to this group and I thought to myself, 'Good Lord, I'm quite' I'm quite sane really' [laughs]. Most of the time I think I'm a complete nutcase, but these people seemed to be dealing with a lot more than what I'm dealing with, or they were not where I am in terms of making peace with their voices. There were still levels of denial and not understanding where these voices came from or how they were created due to past trauma. And it was quite good because the facilitator, they talked a lot about coming to term, and helping the groups come to terms with it, and understanding what hearing voices are and, you know, the history of hearing voices. And I'm in some extremely good company, which is nice to know. 

Some of the greats in the world were voice-hearers. Even though I knew that these people professed to hear a voice, the voice of God, the voice of whoever, I never made the connection with my experience. And that's wh
 

Jay has arranged a reasonable adjustment with her workplace to allow her to come in late in the...

Jay has arranged a reasonable adjustment with her workplace to allow her to come in late in the...

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Sometimes I have to come to work very late because I just can't get it together in the morning. And it'll be 11 o'clock when I'll get in to work, when I should have been here at 10. Or sometimes it will be 12.30. But I make sure the other end of the day I make up those hours. And that's the reasonable adjustment that I've negotiated with my employers. Because it, it's no good you trying to tell me, 'You know you should be in at 10.' It's not going to happen. At certain times when my head is just not behaving, it's not going to happen. It's just not going to happen.

So, you know, I think that's the other thing that keeps you like that. Because if you don't address the fact that maybe you're going to have trouble getting in on time, the more you get slow in the morning the more you panic. Because you know it's getting closer to the time and you're going to have to give them yet another explanation why you are not in yet. And because you don't want to tell them the real reason, you have to find a reason to tell them. And it can get way too complicated. So it's just easier to tell them, 'Well, look, this is it, blah, blah, blah.' So even now it's got to the point where I've negotiated one step further. If I've had a bad night and I am up later than half past two in the morning, I will phone the office to say, 'I'm going to be late.' Because I know that those pills will not have worn off by 10 o'clock. So I'm going to be late. And I won't even be awake to make the phone call to tell you I'm going to be away, going to be late. So, you know, we've negotiated that. And that takes so much stress off my head. Because I can get up, and had a bad night and get up and it will be 11.30, 12 o'clock and I can go to the bathroom, get washed and dressed and go to work. And no one's looking at me sideways. I just phone to say, 'I'm in now' and guarantee I'll be at work 'til 7, 8, 9 o'clock sometimes. And I'll just log out and everyone will see that I've made up my time. So, you know, where, where it was an issue, you've got to try and make things not be an issue in order for you to cope. And the only way for you to make it not be an issue is to tell the truth. 'This is what it is. This is, this is the best that I can do at these particular times.' And if that company or person or whoever it is can't work with that, you've got to move on. Because no job's worth it, no person's worth it, for you to get yourself in such a state it affects your health. So, yes, that's how I do it.

 

Jay couldn't identify with her surroundings and thought they were not culturally sensitive.

Jay couldn't identify with her surroundings and thought they were not culturally sensitive.

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Let's start with the women's service. The, it was a very nice house, very well laid out and furnished etc. There was nothing in there that I could identify with as a black person that made me feel welcome. It didn't make me feel like it was a familiar place, a necessarily welcoming place for me as a black person. 

The staff were, I won't say they're indifferent, they just did what they did. But none of it emulated anything that I was familiar with. The food we ate was English food, unless we cooked and then it would be something different. It was predominantly tasteless, the cooking. The salt and pepper type cooking that nobody likes, but that's what existed. Just a general feeling that, you know, when I was talking and, and started talking to people in my latter weeks, you know, I would, sit there and crack jokes and, and be quite animated and quite loud and, 'Can you keep it down please,' 'Why?' 'Because you're a bit loud,' 'But why do you want me not to be loud? Am I disturbing somebody?' 'No, but it's a bit loud.' 'I don't understand. What's the problem?' But that sort of thing. It's just not taking into account that, you know, as a black person from the Caribbean you meet other people from the Caribbean, you're cracking jokes based on maybe something that you identify that you have in common. Because a lot of the time in there you're trying to make connections with people. Whereas before you was in there, maybe you weren't able to make connections, and we did. And me and these two other girls, we spent a lot of time talking about common ground. And it was funny sometimes. And sometimes it got a bit loud. 'But it's daytime and we're in the garden. What's the issue, sort of thing? So, yes, it, that, that was strange. And also just generally there was nothing, no one to support you. They just, there was just lip service to the word support. There was no real support. There was no real tangible thing that you could take away that helps you to get on with your life or rebuild your life. And it wasn't culturally sensitive. To, to say that, you know, 'From a cultural point of view you may experience this. This is a good coping mechanism for this and this and this.' And there was none of that, there was none of that. 'Just get out there and sort yourself out,' you know. There was none of that kind of help. And I do find that is still around now, you know.

 

Jay took the opportunity to be an informal patient when it was offered but was very upset when...

Jay took the opportunity to be an informal patient when it was offered but was very upset when...

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They said to me that there, there was a place that I could go, a women's referral unit, and if I did, if I wasn't going to go there voluntarily then they, they were going to section me. So of course I took, took the opportunity to put myself in, in, in somewhere voluntarily [laughing]. It seemed like a good idea. Not that I really knew an awful lot about mental health and the system that, before this happened. I just thought, 'It's better to go voluntarily than for someone to by law imprison you.' Because to me it sounded like, 'Well, if you don't go, we're going to lock you up,' sort of thing.

So, yes, I went there. It was bizarre because they didn't take me there. They sent a cab to get me and off I went in the cab, or was it an ambulance? I can't even remember what it was now. I think it was an ambulance car thing. Anyway it wasn't, I remember going there and thinking to myself that I might be, never be able to call myself normal again. And so therefore I just thought, 'Well, all right then, I'll just go along with it and see what happens, because I'm not mad. So it'll be all right.' And I got there [laughs] and this woman sort of took me up to a room and, after talking about whatever, I didn't even hear any of it, I was kind of sitting there and they was going, 'Ooh, and we'll take you up to your room' and took me suitcase. And this woman opened my suitcase and she was checking everything. Checking, you know, the toiletry bag, the side compartment, shaking out the clothes. And I'm looking at her and I'm thinking to myself, 'Why on earth are you doing that? You're making me feel like I'm a prisoner.' I said to her, 'What do you think I'm going to have in my suitcase?' 

'Well, we've got to make sure you haven't got any drugs or alcohol or things that you can harm yourself with or any pills that you shouldn't have' and blah, blah, blah. And I just sat there and cried because I couldn't believe that I was there. And I didn't remember why, I'd decided it was a good idea just to come there. And I just never spoke, for days I never spoke. And I saw all these people with lots of issues and I just looked at them and think, 'You lot are mad, but there ain't nothing wrong with me. You lot are the mad ones, because you're behaving mad. At least I'm just sitting quietly. You're carrying on.' And I didn't feel part of what was going on. I didn't, I didn't feel alienated neither, because there was another two black women there too. So, and there wasn't many people there. I think there was about eight of us. So, and it was all women. So I had my therapies and classes and whatever else went on in there.

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