Anna - Interview 05

Age at interview: 20

Age at diagnosis: 11

Brief Outline: Anna was diagnosed with generalised absence epilepsy at the age of 11. She is on lamotrigine now but has several seizures daily.

Background: Anna is a 20-year-old English literature student. She is single and lives in a shared student house. Ethnic background / nationality' White British.

More about me...

Anna is 20 and studies English literature at university. Around the age of 11, she started 'daydreaming' at school and was taken to the doctor - Anna was diagnosed with generalised absence epilepsy.

First she felt sad and disappointed about the diagnosis. She didn't want to be different from everybody else and, being so young, it was difficult to get her head around the diagnosis. But she then realised getting a diagnosis actually made her 'fit in' better because she could be treated.

At the age of 17, when being unwell with anaemia, Anna experienced an episode of 'status epilepticus' with several tonic clonic seizures and partial complex seizures within one day. Due to such severe brain trauma, the incident caused her to have retrospective memory loss. Most of that month, and the coinciding Christmas time, disappeared from her memory. The tonic clonic seizures have not recurred since.

Anna is now on lamotrigine but has several absence seizures daily. She takes folic acid as is generally advised for women on this medication. She describes her seizures as, "frames in a film,' with, 'some frames cut out and the rest stuck back together”. The seizures usually last just a split second and can even happen mid-sentence. Anna thinks feels the biggest problem with having absence seizures is the 'social awkwardness' and embarrassment they can cause. That's why she thinks it's important to tell people about the possibility of a seizure happening during conversation. Yet she doesn't want tell everybody she meets that she has epilepsy because she wants to be known as herself not just as 'Anna with epilepsy'.

She says epilepsy doesn't affect her life much at the moment, just that she can't drive or ride a bike but she doesn't consider these as big obstacles. For Anna, it has been important to find information about epilepsy and she says, “The more I understand it, the more I cope with it”.

Anna had a day in school when she kept having seizures. She has lost all memory of the whole...

I think from what I can remember I must have started seizuring in the morning, once I'd got out of bed, 'cos I remember putting my clothes on, and I don't remember much else. And my mum said I was really grumpy, I was really sort of non communicative. Then the only thing I can really remember, I can remember sort of a split second of my history lesson because I was at school and I had this incredible paranoia that people were going to shout at me, which is probably why I was quite grumpy with people. Then I started losing my, I couldn't hold things properly, I started sort of dropping things and I was trying to eat my lunch and I couldn't put food in my mouth and apparently it was like being, I looked like I was drunk and thinking about it I probably felt a bit kind of woozy, I don't really remember. I kind of half remember going to hospital, but only these kind of flashes of things that came back quite a while afterwards. I'm probably quite glad I can't remember most of it because I think would have been more frightened if I'd been more aware. 

Unfortunately because that must've been the new year that I went to hospital, I lost it sort of from my memory, I've lost most of that December. Even though I wasn't seizuring over Christmas, I had kind of retrospective amnesia, which was more strange than the seizure itself, it was this sort of losing Christmas and things which was quite weird. They're not quite sure why that is, I think it was just because it was a kind of massive brain trauma. But generally it's sort of marked by a lack of memories more, than sort of bad memories. It's a bit of a blank.

Anna is likely to have seizures if she has alcohol and hasn't slept or eaten well. She tries to...

Drinking alcohol can sort of increase the likelihood that I'm gonna have a seizure, so I try not to get really drunk. I don't like feeling completely out of control, and if I make sure, because you don't eat, and if you're stressed and if you're tired, and if you drink alcohol, they're all kind of factors that make you worse. I try if I'm drinking make sure that I've got all the other things sort of secure. Because if I'm really tired, and I haven't eaten and then have a drink, I'm really likely to have a seizure. So if I try and kind of organise it more, just make sure that I'm not making it really likely that I'll have a seizure, then it's not too bad.

Yeah, do you have a sort of safe limit when you drink, that you know that you are still okay in terms of having seizures?

Well if I'm feeling sort of tired or anything then I'll probably have, I mean I think two drinks would probably be it. Just because I don't think it's awful if I do drink, but it's just like kind of awareness that I don't want to push my luck and have loads to drink and I just put myself at more risk from a seizure, but I've never kind of had to say I'm not going to have a drink, another drink because I might have a seizure. I've just kind of not had another one or had a soft drink instead, it's not been sort of an issue socially.

And what about the day after if you've had a drink, does that make you have more seizures if you've got a hangover?

I think so, in the same kind of way, because you're probably tired, and you've got alcohol in your system that it just kind of part of that, one of those, that, sorry I've seizured again now [laughs]. And it's just kind of that same feeling of being tired and having alcohol in your system makes me more susceptible to them. But it just means that it's something that I've got to be slightly more aware of. But it generally doesn't stop me going out and having a drink, having a hangover in the morning upsettingly enough.
 

Freshers' week was stressful for Anna and she had more absence seizures than usual. She met lots...

I was quite stressed because it was sort of Freshers' week, it was prompting more seizures, but, that was kind of fine, I can deal with the seizures. It was more having to explain it when you are meeting sort of a hundred people in a day, two hundred people in day, so when to tell people, and it means that some people you meet you're probably not gonna see again, and so I didn't want to kind of tell them immediately. I think that's, I don't need everyone to know, but it was just kind of the people I was living with, it was quite important that I tell them. And then if I was sort of talking to people for a kind of a long time, so, you know the conversation just say, "If I seem to kind of 'go out' for a moment this is what it means", and just to try and, to make it as normal as possible. And generally they were kind of more, I had more of a reaction than I did telling it. I found that as long as I was open about it then it was fine and it wasn't a problem. But just to kind of getting the knack of knowing when to tell people, and as long as I've been open about I've never had a problem.

Anna has never had any problems getting work. She's explained to her employers what her seizures...

I know that it can't be used as grounds of disability or anything, and discrimination. Generally I've not had a problem sort of when I've worked over the summers and things. No, my employers have taken it on board as well if I've explained what, if it might affect my work. I've never tried to be a you know, kind of a heavy goods vehicle driver or anything, which I don't think legally I'm allowed to do, and I'm not allowed to join the army, and things like that, so it's more sort of being aware of the professions that I can't go into. Which I don't think I was gonna be a heavy goods vehicle driver anyway, but it's things, limits on what I can do and in the jobs that I can do, that I can't be discriminated against. But I mean I've never encountered one, but if I did, then, sort of it would, they would be in the wrong rather than I would be in the wrong.

Does employability concern you at all?

Generally its okay, I think it's because its quite a subtle thing that I never feel it's gonna be kind of something that would be very noticeable, because it's not very noticeable. As long as I can to say to an employer, these are the kind of seizures that I have, I cope in this way, all I need you to do is to be aware of it, then I've never had a problem, so kind of think that I'll have more problems in the future with it.

Unless you suddenly decide to be a heavy goods vehicle driver [laughs].

Yes [laughs], but there's a list of my neurologist ran through one day, I was like, 'It's okay, that's alright.'

Anna describes absence seizures as 'frames in a film' where some frames are 'cut out and the rest...

The only way I've ever been able to sort of trying to explain to other people, it's a bit like kind of frames in a film, that if you could cut some out, and stuck the bits back together again, that's how I perceive it. I don't register it like a gap or I don't sort of go into my own thoughts, it's just a jump in my reality. When it was, when I was worse and I wasn't sort of as well medicated as I am now, I could sort of be out for kind of three, four, five seconds, which was quite difficult, and then because the jump was more noticeable, I would feel more disorientated. As I've got older I'm sort of both having shorter seizures which makes it a bit easier 'cos I can generally work out what's going on, and also I cope better, I can guess what I might have been saying, or I can kind of pick up from conversations, and so my perception of it is, everything is kind of just a bit shifted. I think it's difficult for other people because their perception of me when I do it, is I've been told that I roll my eyes up, and I tend to look like I'm kind of daydreaming, 'cos I think I do that when I'm not seizuring anyway. I say 'um' and try and remember what I'm saying, and it just looks like I've kind of lost what I'm thinking about, and if I know people quite well and they know that hose are the kind of indicators that I'm having a seizure, so they generally tend to be better at noticing when I have a seizure than I do. Which is nice when you've known someone for long enough that they can, they don't wait to be told that you've had a seizure, they just kind of recap what's going on.

Anna tries to remember to tell people about absence seizures to avoid 'social awkwardness'.

I mean there is no physical change; I don't feel unwell at all. If it's with people I don't know well, it can be quite embarrassing. If I forget to tell people, I think I should, I try and remember to tell them before I have a seizure, so they know if it happens. A couple of times with tutors or friends I've had a seizure and then had to explain afterwards, and that can make them I think feel uncomfortable which then reflects back onto me. I feel guilty that I've not told them, and that it's broken into a conversation, and it's disrupting, what we're talking about. It's not a physical feeling, it's more a kind of social awkwardness, that it can be normally, because most people are very understanding of it, it's just kind of more because its disrupted the conversation. I very rarely have a negative reaction to it, and that can be difficult, that can be really difficult, but it's so rare, that is generally fine.

Anna's teachers didn't realise when she was having absence seizures and how absences made some...

My school weren't very useful, chiefly because I don't think the teachers often realised when I was having a seizure, which didn't really get better at all when I was at school they were just not very good. Which I think is difficult on them because it is difficult to recognise when I'm having a seizure if it's only for a split second, but it meant that they weren't very good at working out when I was seizuring and how that might make things difficult for me. So really until the 6th form when I kind of had extra times on exams, I kind of had to explain them quite, not firmly sounds like too aggressive, but really articulate in detail what I needed and how things were more difficult. And once they understood they were really helpful and wanted to do, there was never hostility, but it was just more because its not a tonic clonic seizure in the way that you can isolate it and understand, it was more subtle. So I think it makes it difficult for people to get their heads around it. Which makes it difficult if you're kind of a young sufferer. It was easier when I was older, from being eleven, twelve, thirteen, it was quite difficult.

Anna says it took her a while to realise that giving her problem a name had made things better...

I think it's difficult to kind of go back to it, because it was being eleven, I just remember being, I was kind of disappointed and frustrated that I desperately didn't want epilepsy because I think it was more, it was the word it's quite sort of it carried it's a heavy word. And then actually when I realised that it was just a word for what I was doing anyway, at least if I had diagnosis then you could be treated for it, and it gets better rather than getting worse. But I just didn't want to go to the neurologist and didn't want to be different I think was the thing, 'cos typically kind of being eleven and just not wanting to stand out or be different. And then it was fine, it made me fit in more because I could at least then be treated as kind of to engage more with other people and not be as affected by the seizures, which was better but for a short time it felt like things were a lot worse.

I think it's important to, that I was more frightened of the diagnosis when actually the diagnosis was very helpful and made things a lot better. I was worried that sort of giving it a name would make things worse, when giving it a name sort of meant that I could get treatment, medication, and it was a positive thing rather than a negative thing. Being sort of less reluctant about that and it didn't matter what it was called, what was important was sort of working out what was wrong and then how to make it better and sort of being able to live with it. That was much better than leaving it undiagnosed.

Anna tells most people about her epilepsy. She says getting 'the balance right' is important,...

I've never felt shy about telling other people. I think what I do get worried about is if I kind of make, I'm worried about making too much of a big deal about it in case people think that I'm fixated on it or anything. So I just try and say enough that people understand what I'm doing, the kind of seizures that I'm likely to have and what they should do about it, and then I don't need to talk about it again. But I try and to tell people before otherwise they feel awkward or some people can kind of felt left out if I've not told them. You know, so I just try and tell everyone without inflicting it on everyone and sort of making you know like a huge deal of it.

What do you mean by sometimes being worried that people think you're fixated by it?

I worry sometimes that because it's both a huge part of my life because it means that I can't drive, and it means that I have to be aware of telling people, but at the same time I don't want it to be, apart from the things where it has to be a problem, I don't want it to intrude any more. And I think people have known me for years and haven't noticed, or haven't needed to know and I quite like that. I'd like it to be as kind of as have minimal importance or significance and so I don't want to be the girl with epilepsy. Although I do want people to know how they can support me and just know more about the condition, and how that might change, how they, sort of how we interact and things. Which I think is, I don't know, maybe it's a perception that I'm more conscious of it than other people are. Kind of getting the balance right.