Epilepsy is a difficult label because there is so much stigma attached to it. There’s so much and when you tell people that you’ve epilepsy they act in a completely different way. They almost expect as though the minute you’ve said it that you’re all of sudden going to fall down and start shaking and foaming at the mouth and things that don’t really happen. And in terms of that it’s a difficult label to deal with. There is so much ignorance about it. I mean if you say that you’ve diabetes I mean people know that you can’t deal with sugars and if you say you have hay fever, you know you have asthma they know that you have breathing difficulties. If you say you have epilepsy they don’t know what that means. They don’t understand it. There’s no understanding behind what that means or what’s gonna happen to you and so it’s such a difficult label to deal with.

I think it’s just with lot of things, you know, if you haven’t really got the condition and you haven’t experienced it I think people just don’t quite understand and people can sometimes be a bit harsh in the way that they say things just because they don’t understand. I think not long ago epilepsy was something that people were almost scared of, but I think it’s a lot more, there’s a lot more information now and people know a lot more about it so I think it’s more accepted if you like and people find it to be okay and I think people with epilepsy can get along fine really and but, you know everyone needs to make sure that people around them do understand what it is so you can avoid awkward situations really.

It [epilepsy] definitely has changed my life in ways which, it’s sort of taken away things which I hadn’t appreciated before. I think other people my age who, who know that I’m ill, they sort of find that hard to sort of understand the subtle ways in which it’s sort of changed my life. And I suppose unless it’s something that you’re experiencing, it’s a bit like, Well what’s the big deal? Because I don’t have say tonic clonic seizures, my seizures are quite subtle, and since being on my medication I haven’t had a proper seizure. So I think unless you really think about it, it’s hard to see how it affects your life so much., and so that’s one of the reasons why I only told sort of close friends, is because I think, well firstly there is still quite a lot of stigma, and they sort of, I think a lot of people assume that if you have some sort of neurological problem that you must be a bit stupid or something, you know [laughs]. But also because I think it’s very hard for young people who don’t have epilepsy to really appreciate how the small things can actually be really difficult to deal with.

Do you come across lots of sort of ignorance or misconceptions people have about epilepsy when you tell them or when you talk to them about it?

Well yeah, and I think the major one is as I say that they don’t think that there’s are any other types of seizures other than what they sort of perceive a seizure to be. And also for myself it is if I do have a seizure is being called a drunk afterwards, you know most of the times I haven’t drunk anything before a seizure and I think people are kind of quick to jump to judgements about how you are or how they think you are, when really you are nothing, you know. You are just a normal person really with just something else going on.

What could they think about the sort of person you might be then?

I am not sure really, but you can kind of sort of see it in people and they, I think they treat you differently as well and I think that is the major thing, and really you just sort of want to be left alone to get on with things, you know, but it is this kind of sort of wrapping you up in cotton wool type thing that people tend to do.

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.

I prefer, I will tell ’em eventually, but I’m not too sure about telling them straightaway, ‘cos it’s like I said, I don’t wanna scare people. But at the same time, it’s why I put on my profile that I’ve got the epilepsy because I want people to know, I’d prefer people to know, so they’d know in advance and not get scared talking to me, I mean. People I’ve talked to have generally been quite good they’ve said you know, ‘Why would it bother them?’ but you know. It’s just that I want them to know that I’ve got it you know. Some, some cases I’ll tell them, some cases I’ll leave it for a little while and then tell them. I mean a lot of people seem to know about my other disability, my left side because of my hand, they can normally tell about my hand that I’m disabled [hemiplegia].