Annie - Interview 17

Age at interview: 34

Age at diagnosis: 18

Brief Outline:

Annie had a 'normal' life before becoming unwell in her teens. She was admitted to hospital at 18 and diagnosed with cerebral lupus at 24. She finds the stigma and experience similar to others with severe mental illness. She is now doing graduate studies.

Background:

Annie is a student, single and has no children. Ethnic background' White British.

More about me...

Annie described life as being ‘pretty normal’ before contact with mental health services. She describes her background as ‘quite privileged’. There was no family history of mental health problems and she ‘hadn’t been exposed to anything horrible’. She describes things as ‘slipping’ a little bit, for example not going to parties as she didn’t feel particularly sociable. She then describes things as ‘gradually escalating’ and her parents thinking that she was doing drugs. She felt that her parents were ‘quite liberal’ so they ‘let it ride’. Eventually the school called social services as Annie was starting to act so oddly at school and was not really on ‘planet earth’.

 

Annie struggles to remember this period and she describes herself as ‘in and out’. She said she tried to hide her behaviour. She recounts moments of insight in which she thought ‘Shit, what’s going on?’. She now finds it very hard to explain the experience to other people but it was a ‘sort of vagueness’, and it was very scary. She had alarming thoughts such as ‘the house is on fire’, rather than hearing or seeing anything. A lot of the time they were centred around the police coming to get her, and she worried when she heard sirens. She says that she was ‘five miles ahead of herself’ as her thoughts were racing. In the children’s home her sleep and eating were ‘all over the place’ and her ability to keep herself clean was declining. She was referred to a psychologist and that escalated to psychiatry. She was subsequently admitted to psychiatric hospital and was sectioned for six months. When she was first sectioned she didn’t know about the legal process. In some ways she was relieved and in others she was deeply embarrassed. She was admitted into adult services as she was 18, and felt quite young by comparison. She found it a bit boring. Some of the nurses she found were nicer than others, and she said the food was ‘crap’. She remembers being on quite a lot of medication, and for the first few days feeling ‘pretty shit’. Initially she was treated for psychosis and depression, as well as sleeping tablets.

 

Annie had to repeat her ‘A’ levels and was a ‘couple of years behind’. She feels sad when she looks back that she missed lots of 18^th birthday parties, had a difficult time in the upper sixth, and was sectioned on her 21^st birthday. She was sectioned again when she went to university for the first time. She found halls of residence very difficult and very noisy. In the end she was very paranoid, and a tutor alerted services as she wasn’t drinking or eating. Eventually her door was knocked down and she was taken to A&E. She got her degree and says that nobody much noticed that she couldn’t cope, as the course had minimal contact hours. She was having lots of time off sick and then at 24 she was diagnosed with lupus. From that point on her experiences were interpreted as cerebral lupus and not psychotic depression. She now finds it easier talking about lupus than about her experience with mental health services. She doesn’t really tell colleagues and ‘wider friends’ now, and getting across to people the fact that she is still confused about aspects of her experience but that she isn’t ‘completely mad’ is difficult to get across. A psychiatric diagnosis was a relief to her in some ways as showing that ‘you’re not just being an idiot’.

 

She describes the impact mental health has on everything, and the importance of getting the ‘balancing act’ right. Although she is currently ‘loads better’ she says that she ‘wouldn’t bet a pound it wouldn’t happen again’. She says that she can’t take in too much information and gets ‘overloaded really quickly’ even if the stimulation is nice, such as going on holiday. Annie says that in theory she knows how to balance her life now, but doesn’t always get it right in practice. She has had help from mental health services, who have advised her to live ‘within [her] limitations’. She tends to have just one negative voice saying really awful things are going to happen. She doesn’t recognise the voice and describes it as ‘all-prevailing’ at some points. She describes her family as supportive, but sometimes they struggle to understand what it’s like. They didn’t ‘give up on her’ and they encouraged her to complete university. Now her mum rings every day. They have ‘held on to who [she is] even when she’s been unwell’, and ‘not saying ‘you’ve messed up’ ‘. Annie thinks that the medication ‘slows you down’ but, as she has been on it for so long, she can’t remember what it’s like to be off psychiatric medication. Now she is on a low dose to Trifluoperizine rather than higher doses during episodes. She finds ‘too much choice’ very stressful. Even when she isn’t in a ‘total episode’ she still has ‘vulnerabilities’. When she is unwell she starts thinking stupid thoughts and gets ‘ten steps ahead of herself’. She has been in the same location for ten years and has consistent experience of services. The social side, such as meeting up with friends or keeping appointments, can be quite difficult. Her relationship with her boyfriend becomes ‘less equal’ when she is unwell, but it is flexible, so changes when she is well. Recovery for her would mean ‘genuine acceptance’ but would like a ‘total recovery’ where ‘everything is brilliant’. 

Annie saw her hands ageing significantly every half an hour and started to pull her sleeves down so she couldn't see them.

And like the other week, I thought that my hands were aging, like every half an hour on the half an hour. Because… like physically see them getting older. And then, you know, but I knew, I knew like cognitively you don’t age every half hour on the half hour, but yet I could actually see that I was aging and so I was like doing my working with like …I pulled my sleeves down so I couldn’t actually see what was going on and still that is something I still struggle with. That’s definitely, I would say, you know, in the here and now, that is something that is definitely around for me, the idea that you know, my hands are looking ancient. When they’re not really.

 

I should imagine that’s very difficult to sort of over-rule yourself?

 

It is. It is really hard, yes, that idea of being over, yes it is hard to over rule yourself, because it is so kind of there. You can’t over … well you can and you can’t over rule yourself. You can’t really. Or I think you can may be in terms of your behaviour, but you can’t in terms of your thoughts. I think that’s probably as good as it gets with me, is not to act it out. Is not in terms of mental health services that’s what they sort of say to me, because it’s like, you know, may be you won’t ever get rid of all those kind of thoughts, but it’s not acting them out, and it’s not kind of escalating it into the real world. It’s like, you know, if you think your house is on fire, you know, but like what per cent of you knows it’s not on fire. Don’t phone the fire brigade. Yes. Because actually the person, mental health services are quite, a little bit concerned, the fact that I pulled down my sleeves, because then that was like a really small thing that I’d actually modified my behaviour.

Annie has found that even 'good' stress, such as going on holiday, can be too much.

So it’s, you know, it’s not, and it impacts on everything. Because everything you’ve got to think of, you’ve got to think can I do that? You know, and don’t stress yourself out too much but then don’t stretch yourself out too little, and you know, it’s getting that balancing act so that you don’t kind of stress and raise up a major, major precursor to it. To be much as you cannot deal with stress because it just, so that everything that you become really guarded and you think I can’t do that because, because that might happen. You know, even like, you know, even good stress, even like going on a holiday somewhere new, you know, I mean it’s not stressful. But then I think oh God, because I can’t take, like I can’t take too much information. That sounds stupid. I get like overloaded really quickly and kind of sometimes when I get overloaded that’s when I get thoughts that aren’t quite true. So it’s kind of thinking how much sort of stimulation I can take and even like a holiday, when you get like lots and lots of new information and lots of new surroundings and stuff. That’s like a good thing, but in some ways it’s a bit of a scary thing, because I’m not sure whether I could take it if I’m not feeling particularly well. If I’m feeling, you know, if I’m having like a good period, yes I can, but if I’m on like, not feeling totally great, then it’s a bit like hm…

 

And have you worked out any sort of strategies for dealing with that kind of balance?

 

I think so. I think yes, I probably have. I’ve probably kind of my friends now, with my friends, I’m quite sort of consistent with my group, and yes, I’m kind of, yes, it’s, it’s learning to accept what you can do isn’t it? But I’m not very, yes, theoretically [laughs] I’ve worked it out, practically I probably haven’t. I could probably …. [laughs].

 

A bit like dieting? [laughs].

 

That’s how I think. I can tell you what I need to do, but whether I actually do it or not, another matter. I’d say that that’s yes, it is another matter [laughs]. But yes, I mean I’ve had like loads of help as far as kind of working out what you can and can’t do for a month or have services and stuff. So they always sort of say like learning to live within your limitations and stuff. And they’re right and they always sort of say that acceptance is something that I really personally, I really struggle with. And they’re right [laughs]. 

Annie can find tasks like going to the supermarket overwhelming and can sometimes feel as though she is being tested.

If I’ve got like, what I perceive that I’ve got too much to do in a day or if town’s really busy. Or the supermarket, I’m shit at food shopping. I just can’t kind of cope with too much choice. And too much new stuff. I get kind of a bit stressed, but a bit more than a bit stressed, a bit kind of I can view things as a test really quickly, I kind of think. Like the other day I was in the mental health services actually, ironically. And like the radio wasn’t tuned in totally properly. The radio was like, it was like shitty old radio and it wasn’t tuned in so there was like white, like zzzz you know, what I mean buzzing noise at the background and part of me thought that was a test if I’m honest. Part of me thought, psychiatric services set this up, to see whether I’m going to flip. But stuff like that I can sometimes sort of think, this is when I’m not particularly unwell, but these are sort of every day. I can sometimes think the supermarket’s a bit of a test, like too much decisions, and whether I can kind of cope with it. Yes. And that’s kind of ongoing really, you know, even when I’m not... even when I’m kind of like in a total episode. I think for me, when I am not in a total episode, I still think I’ve got vulnerabilities to thinking that things aren’t, you know, to thinking that that’s a test and stuff when it isn’t a bloody test. It’s just the radio’s not tuned in properly. 

 

So is it more about sort of organisations being more malevolent or that kind of thing or …?

Is not as coherent as that, in a way? Who would be testing you?

 

I don’t know. I don’t know. I know it’s not that it’s more, no it’s more kind of, it’s more like, not voices, but I don’t whether it is voices. It probably is voices. It’s more kind of like you know, you’re not, that you just can’t cope, and that you’re not going to be able to cope and you’re not going to be able to… or that you’re not going to be able to cope with this and then that’s going to escalate and it’s seems, it’s whether you’re going to be pushed. I don’t know who’s going to push me and I don’t know, you know, I don’t have any sort of idea that you’re going to be pushed and someone’s x, y, z are going to push you it just feels that they’re, that’s like a test, you can’t cope with that, and then you’re going to cry. I’m like ten steps ahead of myself. All the time. Well not all the time, but when I’m like a little bit unwell. Which I had I went into mental health services last week, where I’m not particularly 100% well, then that’s when I kind of start thinking stupid thoughts like that. Really.

Annie found it easier when her diagnosis changed.

In some ways I found it easier, kind of when I’m talking about it to say it’s cerebral lupus than it’s psychotic depression, even though the symptoms and the, and as I said the symptoms, the outcome, the medication, kind of the services involved have been exactly the same. But then, within my own kind of, my own assumption you know, and my own prejudice, I probably find it easier to think that’s what it is, even though, as I say it’s exactly the same. I’m less embarrassed. I think I’m less embarrassed about kind of having psychotic episodes now, then I was when I was a teenager, but I think that’s perfectly normal to be embarrassed by everything.

 

I mean you’ve talked a little bit about the reactions of other people what has that been like. You’ve a talked about your family, but what about other people?

 

I don’t think I’m totally honest if I’m honest. I don’t think I’m totally honest. I mean mental health services have been quite, I don’t think, I’ve not had a bad experience of mental health services and I’ve not had a bad experience of my GP, at all, but, but kind of, you know, wider friends and colleagues and stuff I don’t really tell. I don’t really say that that’s what I’ve had or anything.

 

And why do you think that is?

 

I suppose a slight embarrassment still, and slight kind of can’t quite, it still does, it still even after a long, long time it still does feel confusing to me, and it’s still stuff that I’m not quite sure about and I’m not quite sure what totally went on, what totally didn’t go on and so it’s quite hard to get that kind of I’m still a bit confused across to somebody in a kind of, but I’m not mad really [laughs]. Do you know what I mean, getting that both, getting that I am still confused about it, but I’m not a complete nutter. Getting that kind of dual aspect of it, across to somebody in a coherent manner is quite difficult.

 

And if you had any more sort of direct experience of people not understanding or you know, any adverse reactions or that type of thing or…

 

No, not particularly. No. Not particul… I think people find it hard because, as I say partly because of medication, partly because of the other, the wider diagnosis. I get tired really quickly. I think they find it difficult. And because I can’t process things. I think yes, I think, possibly, the [tutors] do find it a bit hard. Or people do find it a bit hard, because I’m quite a bright girl, at some, academically bright, academically able, and yet I can’t quite process things, quick and other things, like practical stuff and I get overloaded really quickly. And I think sometimes that’s quite difficult for people to understand, that I can write this great long essay, but yet I can’t kind of get my shit together in the morning and be out the door by 8 o’clock, you know, and that’s partly because of the medication. And I think people find that quite hard to understand, is how, how I can be so able in some ways, and sort of cognitively able, but yet in other ways kind of being able to process the everyday things, I can’t, I find that really difficult. I get, I do get overloaded with noise really quickly, and I get overloaded with kind too many new stuff. Which is weird because as I said I can academically cope. But not, kind of not with that, you know, what I mean, it’s sort of whoosh, it feels a bit, yes.

 

Annie went to a 'posh' school and remembers doing well there but then she remembers things 'slipping'.

What was life like before you had any contact with mental health services?

 

Pretty normal really. Well very normal. I had a very normal childhood. Probably quite privileged in some ways and you know, nice, posh school [laughs]. You know, I had a sister, I was very close to Mum and Dad, brought up, you know, no divorce. Just normal. Academically succeeding. Yes. Very, very normal really. Very normal. Probably yes, yes, boringly normal [laughs].

 

I’m sure it wasn’t.

 

Yes, yes.

 

So what happened when you were in your teens?

 

Yes, well as I got to sort of the sixth form really things, and initially things were just sort of slipping a little bit. I kind of did four ‘A’ levels and then it was a drop down to three and then kind of was allowed to go home a bit earlier than others may be. Kind of just sort of, and not going to parties. I remember that being quite a bit thing. Not going to like, being invited to all these eighteenth birthday parties and not going. Because I just didn’t feel particularly well, sociable, myself really. So I kind of yes, I kind of just things were slipping really, if I’m honest and just sort of, but sort of not massive slips. Just lots of sort of, lots of little slips, if that makes any sense. You know, not kind of, not anything massive, but if you look back on it, lots of things were going, like my Saturday job, like the four ‘A’ levels down to three A levels. Like kind of work university I was thinking for, you know, aspirations were sort of slipping, you know, I was sort of heading for, you know, pretty good universities and therefore, you know, then starting to look at lesser universities and kind of not being sociable, that was the main thing as well, kind of giving up on going to parties and giving up sort of hanging out with my friends and stuff. So yes, and then it just gradually escalated really. 

 

Annie's parents believed in her, helped her financially and practically, and held onto a sense of her as a person even when she was very unwell

I just think kind of, I think they’ve not given up on me. I think that’s the main thing. Is that when I sort of, you know, I’d had 18 months off, they then didn’t say tough shit, you’ve missed your A levels. You know, then when I sort of actually had gap years at university and time out, they then didn’t say, “Tough shit. We’re not going to help you finish.” You know, they sort of helped me practically, they’ve helped me financially, they’ve helped me, kind of, I mean emotionally they’ve helped me. I mean I speak to Mum every day, mostly in the mornings, because I think partly because of my medication I’m not great in the mornings. So, you know, she does phone every day, and I guess if I was, well I know if I was like 100% well she wouldn’t, because she doesn’t phone my siblings every day and they’re similar age to me, whereas she does to me, and sees that I’m okay and stuff. So yes. I guess just not giving up on me.

 

And I guess still knowing that kind of when I was like away with fairies still kind of holding onto that kind of sense of me, the sense of [name], and that I am fundamentally a nice person and you know, that’s what my Mum and Dad have always sort of hung onto. They’ve always said, you know, even at my worst, and when I got absolutely talking shite that, you know, and they used to be very like that with staff, they used to be, she’s a lovely girl [laughs]. Yes. I don’t think they’ve kind of forgotten who I was even at my absolut… which must have been bloody difficult really what happened at 17, 18, especially for Dad. Yes. So, yes. They didn’t just, yes holding on to who I am really. And giving me the opportunities, yes, not kind of saying right, not like, saying you’ve messed up, tough.