To begin with yeah, just cried lots and found it really difficult to explain why I was sad, because it is so difficult to understand from the outside. Just became quite introverted, and felt just devastated really. I felt like I was grieving, in a way, because it felt as though, well in a way I sort of catastrophising to begin with. I was like, Well I’m never gonna get a job. I’m never gonna get my driver’s licence and whos gonna employ someone whose disabled, who might have to miss days off work, and how am I ever gonna pass my exams, because my medications gonna make me, it’s gonna affect my memory, and what if I have to leave university, what if all my friends abandon me? I was thinking all these things and they’re not very nice things to think. To begin with it was just spending a lot of time on my own, crying lots, and sort of doing small things which, just to try and make myself feel better, really trying to sort of make the best of it just buying my favourite chocolate bar and watching a good film and hoping that would make me feel better. And sometimes it did, but then sometimes it was like, Well, why can’t I go out and drink my sorrows away? [laughs]. Yeah, so that’s probably most of what I was doing for a long time was sitting on my own and crying.

Okay, when I first had my first seizure I was on holiday in Tenerife. But I had had quite a bit to drink, so they kind of put it down to the too much alcohol at first. They said, “Ah if you have anymore come back.” And then I was out again and I hadn’t been drinking and I had another one. So they sent me to the hospital and that’s when they diagnosed me with it, at the beginning. And when they told me I just blanked them, I just didn’t really, I was just like didn’t listen to basically what they said, like I started crying, because they said I couldn’t drive anymore. I didn’t really care about the epilepsy I just wanted to drive my bike, and then I spoke to the nurse and she said about it all the medication and I just didn’t listen and when I actually came home and sat on my own, I kind of like realised that like I had something wrong.

When they told me I had epilepsy, I blanked that and I started crying because I couldn’t drive. I drive, I drove a moped, I love mopeds. I’ve been brought up with bikes all my life and I’ve had one since I was 16, and when they said that I’d just bought a brand new bike two weeks before I was diagnosed, and they said oh you know you’ll have to stop driving. If you don’t tell the DVLA, we will. So I had to stop that day, I couldn’t even get one last ride out of it and I was absolutely distraught, I didn’t care about the epilepsy, I just wanted to drive my bike. Because that was my way of like getting away from things ‘cos I can’t drive a car, I could just go anywhere on my bike and get away from everything, but now if I want to go out somewhere, I can’t really go that many places. I can’t get away, not as quickly as I could on my bike and just go.

But the GP did say it could be epilepsy, but he didn’t actually specialise in that until I went to see the consultant and I was told that it was epilepsy. It was a shock to me system but I was expecting it. It wasn’t as if I went in one day and he said you are epileptic. You know it was over a gradual period. Family had been able to support me as well. Family has helped me through it so far.

Do you remember more about those feelings at that time when you got diagnosed. You said it was a shock to the system?

Yes. When I was first found out. I didn’t know what to do. I thought if I go out with me friends, what happens if I’ve one. So I thought straight away what do I do. So I told friends. Friends were informed straight away. I sat down and had a talk with them, the same with school. They were informed straight away. And it were, like I say it was shock to my system, but over a period of time it did come out of my mind. Some days I would forget that I had got epilepsy and then some days, like now, time is getting on because of being able to drive and I sit there thinking sometimes in work just thinking what happens, just making sure that me tablets are taken on time.

I was diagnosed with photosensitive epilepsy and was put on a medication, I can’t think what it was called. But I was put on medication and then was told obviously that it would take about six months but for it to work. But I was given loads of leaflets type thing and given a long list of different organisations that could help, different nurses and things. To be honest I didn’t find it that helpful because at the time I was, you know I was very young, and I was just going into my teens [laugh], you know hitting puberty and really just wanted to be a normal teenager type thing. And they wanted me to make decisions I didn’t really want to make you know, which medication I was going to go on, which was not the sort of thing I really wanted to be thinking about. I found it very difficult, you know, thirteen to be trying to live a different life to my friends, a lot of friends didn’t react well to it. They supported me, but they were ‘it was like they went through a grieving process in a way because they weren’t quite sure what to do, and they didn’t really know anything about epilepsy, so I think it has changed in ten years, but you know, I lost a lot of friends through that. So that was very hard.

It did worry me when I first found out I had epilepsy. I just didn’t really know too much about it but now I’m better and I’m coping, I know more about it and stuff, well you learn to live with it, and people around me are more understanding, and they understand what to do if I have a fit, so it’s just confidence really, and getting your confidence back because it is quite a bit of a knock. But to be honest, in the beginning when I was first diagnosed, like I said, I didn’t really care. I didn’t really care that I’d been, that I’d been diagnosed with epilepsy like, I was just so ignorant, and it wasn’t until like I had a couple of quite severe fits that I realised that I’ve got to start taking my medication. My self-esteem I think took a drop then, do you know what I mean? When I realised, “Look Charli this is serious now, you’ve got to start taking your medication”, and that’s when my confidence dropped and I thought, “Oh like it’s gonna be difficult”. That’s when I started getting anxious and worried about things so it all sort of started from there. A couple of years ago really my anxiousness, at the beginning, I didn’t care.

Do you think you just wanted to deny the whole thing?

I think so yeah, yeah, probably, I didn’t wanna admit the truth. I was kind of embarrassed I suppose.

I suppose to coin the phrase; I coped with it by not coping with it. Its not the best way you might look at it psychologically, but from my point of view if I don’t think about a problem, if worrying about it and thinking about it all the time isn’t gonna solve that problem, which isn’t true for all problems, but for some it is, like this, then the best thing to do is not think about it. Is to say right, that’s gonna go over there, that’s to be dealt with and worried about when I have to deal and worry with it. So that’s what I did really. I just didn’t think about it, I did my GCSEs, I got on with my life, I did my A-levels, I had enjoyed myself a bit you know, that was just it really. I just got on with my school life, got on with my education, got on with my friends, just lived, live the life you’re supposed to live I suppose. But obviously not to the full extent and I was always conscious that I shouldn’t drink, I shouldn’t you know do drugs, I shouldn’t do anything like that, anything that might interfere with my medication. I suppose that was slightly limiting in that respect but you know, I suppose from an adult’s point of view that’s probably a good thing, but from a kid’s point of view, not such a good thing [laughs].

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.

When I’d got it and it was all this secondary generalised right central focus temporal I was like well what on earth is all that about? I did have to go and ask a few questions on what on earth some of the stuff meant but it was a relief that at last they had confirmed it. I wasn’t some sort of weirdo that was making it up. They had actually found something at last and where the scar was and why that was causing my memory loss. It was just the jigsaw puzzle kind of came together when it came through and it made a lot more sense for the neurologist. So I think that’s also helped with the consultations as well when you can go and they can say, ‘Yes, I know why now you’re having memory problems because it’s that part of the brain. And they can tell you a lot more information now they know, so it’s not so much up in the air, sitting down, ‘Right I’m still having this problem, what shall we talk about this time?’ Now it’s more, ‘Let’s get down it, and sort it out.

Well, it changed my life a lot once I got the diagnosis because you know I knew that there was something wrong. I’d get the medicine, it improved my confidence a lot more as well. Before I used to, all this going through all them doctors and them telling me all that stuff. I didn’t really do much or socialise with people that much in case they all saw me as, you know that kind of person. After I’d got the diagnosis I was more confident I just went out and spoke to people and did things.

Then obviously because it was private the doctor came around to my house to give us the results, and he had said that I had epilepsy. I remember actually not being too bothered really, because he said to me you haven’t got photosensitive epilepsy, and I remember at that time thinking, ‘Oh fabulous, I can still go out clubbing. I suppose at the age of 15 that was a pretty immature thing to say, or to think, but at that point that was what my life, that was what my life revolved around, you know. I was 15 and all I wanted to do was go out and have a good time with my friends. So at the age of 15 when they told me that I just thought ah that’s fine, as long as I can still go out to the clubs and stuff I don’t really mind. But they said that I didn’t have photosensitive epilepsy and that my epilepsy was triggered by stress, and over tiredness excessive amounts of alcohol, things like that.