Charlotte - Interview 10

Age at interview: 18

Age at diagnosis: 13

Brief Outline: Charlotte was diagnosed with epilepsy at the age of 13. She sees her consultant every three months and feels well supported by her. Her main problems are the frequency, till recently, with which seizures have occurred and the fact that her memory has been affected by the frequent incidence of her 'absence' seizures. Until three months ago Charlotte was having seizures twice a month and sometimes, even as frequently as once a week.

Background: Charlotte is a full-time student doing an Art Foundation course & is planning to go to university after its completion. She lives at home with her mother & younger brother but will move out when she goes to university. Ethnic background' White British.

More about me...

Charlotte was diagnosed with epilepsy at the age of 13. Over the years she has tried several drugs. She sees her consultant every three months and feels well supported by her. Her main problems are the frequency, until recently, with which seizures have occurred and the fact that her memory has been affected by the frequent incidence of her 'absence' seizures. Until three months ago she was having seizures twice a month and sometimes, even as frequently as once a week. 

Her memory problems have affected her educational choices. She gave up her A-level Spanish because she couldn't remember anything and was getting depressed to see how her fellow students were progressing and not her. She said that from being an A grade student she had become a C grade. Despite her difficulties she completed her A-levels in Art and she is currently doing an Art Foundation course and plans to go to university.

The frequent episodes of seizures have affected family life. Charlotte says that her mother is anxious about her and she in turn, feels limited by her mother's protective attitude wants a more independent life. Her freedom of movement is also restricted by the fact that she lives in a rural area with no public transport and has to rely on her mother for lifts everywhere. 

She has a supportive group of friends that understand her condition and they know what to do in case of her having a fit. One of her friends attended a course to find out more about epilepsy. In turn, another friend has developed ME and has sought her support and advice. In the past she has had bad experiences with some kids at school who did not believe her when she explained about here condition, and thought she was just trying to get attention. 

One problem that has resulted from her epilepsy is memory loss. She feels a bit scared as she is...

How did it make you feel to have this memory loss and to accommodate to a new situation? 

Scary [laughs]. It still is. I can't remember any of my holidays. My mum will say this holiday and I can't remember and like my friends get annoyed with me because I keep telling them the same situation about the day before and [laughs] I don't remember telling it to them [laughs] and I don't pick up things as quickly and at work I don't, I don't remember my customers and [laughs] I am not so good on the tills because I don't remember certain actions. It has also affected my attention span [laughs]. And my, what is the other one, my... we have got it now. My words [laughs]. No I can't remember the word.

When are you more likely to have a seizure? In the morning, when you wake up.

At night actually they seem to happen to me more. That is kind of if I haven't had enough sleep [laughs] or when I am more tired. So it is what we notice. But its, if I do sleep and then I am allowed to stay up for however long I want to [laughs] does that make sense [laughs] yes, it is just proportioning my sleep really [laughs].

Tell me how often do you have seizures?

I haven't had one for the past like two months, three months really. I am doing all right really at the moment. I am quite happy about that [laughs].

On average in a year how many were you having?

I was having about two a month.

Two a month?

Yes. I mean sometimes one a week. But I mean it depended from week to week and you know, it varied. And you can never tell really, you know [laughs]. It all [laughs] changes really and I mean absence seizures I have them permanently really. But I haven't had them in like two months [laughs]. So I am doing quite well. But yes they happen permanently and when I am on the till at work people get really frustrated with me. I would start tapping the till and yes, it really annoyed people at the till, yes.

What about tiredness. Do you think you get more tired than people your own age or not.

Yes sometimes. I mean it was a lot at the start of my drugs. Not as much now, but whether that is just because I am getting used to the drugs. I don't know [laughs].

So at the beginning you felt '?

I wanted to sleep half the time. And at the minute at college, I go to college and I come home and I collapse on the sofa. There isn't really much more I want to do. I don't have the effort to want to do anything else. So whether that is me being tired or I don't know. But it is a pretty full day that we do so'

Any other difficulties or limitations? Physical or emotional?

Physical. You can wake up with a really bad tongue some mornings. From biting it. Or ache for days [laugh]. But I am pretty active. Like I did hockey and I go to dancing and ballet and modern. So I am pretty active on that side.

Okay.

It doesn't really affect the physical'unless you have just had a fit. If you have just had one you can't really do much apart from lay on the sofa and recover or sleep it off and in that case it kind of hurts [laughs].

Feels less happy than before she was diagnosed with epilepsy at age 9. She feels sad about her...

How does it make you feel to have epilepsy now? 

I would much prefer to be normal and not have it. Just to be able to go out and to be able to drive. I mean I was free for a year and I so wanted to drive. But then I started having fits and I couldn't. But yes that was a bit of a...

Okay. 

Be normal would be nice.

And do you know under which conditions you can start again your driving lessons? I mean if you are free from fits for six months I think or a year?

Yes. It's a year.

It's a year, okay. But it doesn't make you feel sad or frustrated?

Yes. I mean it can. I mean the memory side makes me feel very frustrated. I mean you want to remember like holidays and things and my mum brings them up all the time and kind of why don't I remember it.

So you don't remember much beyond your ninth year. That is the case.

I don't remember anything from like last week [laughs]. I don't remember anything really.

But you remember. There are bits and pieces'

I have bits and pieces things that kind of stand out here and there, that kind of stuck with me, but only little bits and pieces.

And that is all?

That is all really.

I have kind of found out recently that - I have done a questionnaire with what ' some tests that I did at [name] that I am really am not as happy as I was say about nine, before I was diagnosed because I just don't have those memories any more. I am just not as happy. I don't remember what it is to be happy. Kind of, I find it difficult to be really really happy. I can of put on a false smile anyway sometimes when I feel like I should be happy. For obvious reasons that I don't know it is kind of my birthday or something.

Her first children's consultant talked to her mother and not to her. Her adult consultant is nice...

Presumably when you were first diagnosed you went to a children's clinic.

Yes.

Okay. Can you tell me how was that experience?

Good. I mean he was a really good consultant. He - I mean the first consultant I didn't get on with at all. I had to change because I didn't get on with him. He spoke to my mum only and because I am not, well I felt I am not really, I wasn't kind of a child at that age, I was a teenager, I wanted to be spoken to, not my mum and because it was me with the problem. So [laughs] I wanted to be moved. I hated him [giggles] Yes [giggles]. So yes, the second one he was nice. He spoke to me [giggles]. And he got me involved and yes, he spoke to me more and though, even though because I am unconscious when I have my fits I don't remember everything and of course I can't really get involved with the conversation so' but he spoke to me, even though it was my mum doing the talking for me. Does that make sense?

Yes.

So he was looking at me and he was talking.

I think that was great. I mean he is' because we have just finished the pass over session from the children's to the adult's kind of hospital. He just sent a final letter saying, hope you are all right, and' So I thought that was really nice, just to say you know, if you do want any help in the future, I am always here [laughs].

Oh that was nice. That was very nice. Tell me when you changed clinic you went from the children's to which type of clinic. A transition clinic or an adult clinic?

An adult clinic in neurosciences.

Can you tell me a little bit about how was that change from a children's to an adult's. What were the main differences?

Well from the children's you have of course got loads of like two year olds running around and you feel a bit awkward sitting in there because you are like 17, 18 [laughs]. Slightly awkward with all the bright colours [laughs] and you kind of want it dulled down slightly and then in the adult one you feel a bit depressed because you have got all the sad faces and it well. [hospital name] needs a bit of a boost really. I think it does need to be knocked down even though there are all petitions saying it doesn't really. It should do really because yes ' [laughs] It is a bit depressing really but I have got a really nice consultant and she is really good.
 

Her epilepsy affected her memory and it was hard to do her Spanish A level course. Some of her...

And I'm 18 [laughs] Yes 18. Yes. And I am doing an Art Foundation course at [town]. Because that is pretty much the only thing that I am able to do at the minute  as my other studies went down the drain [laughs], because my memory disappeared [laughs] with my epilepsy. 

When you say your memory disappeared can you tell me more about it? And how old were you and '

About - I had absence seizures and which developed into tonic clonic's. And the absence seizures kind of got worse I suppose. I kind of - my memory started disappearing [laughs]. And it in the end affected my school work. And I went from being an A grade student to being a C grade [laugh] which is quite '

'. you say that now you are doing a Foundation Art Course. What else has changed?

I suppose just kind of' I mean I was good at art anyway and I wanted to do art because my mum was good at art so, and my grandma was good at art. So I suppose I was probably going to go and do art anyway. But it closed all other doors for me and it was just ' because I loved Spanish and I did several Spanish exchanges, and that was quite ' because I did a Spanish A-level. I had to stop doing that because I couldn't remember anything. And everyone else was going further and further and getting. Remembering everything, remembering all their verbs and everything and I couldn't remember. So I had to stop doing it in the end. Because I just got so depressed [laughs]. But art now makes me happy. Because you don't need to remember anything really. And in a way I speak to my art tutors even if you forget a skill that can be [laugh] quite artistic to forget it and do it, learn to do it again, as every painting you start from the beginning and to just keep smiling I guess. Just, I mean, me and my mum are kind of quite close and quite well known for putting a brave face on. So ' it is quite good really.

I still did my A-levels because I had to do them for art to kind of get into [town]. Well I could have gone to [town] to do my art A levels there but I wanted to try and do my Spanish one because I didn't know how my memory would be. I mean I got a B I think in my Spanish [laughs] at GCSE but I just couldn't cope with it, the A-level, it was just gradually getting worse.

Can you tell me about how you dealt with that depression, okay?

Yes.

Yes. Dealing with it as most people do. Music [laugh] always good, dancing around in my room just to kind of be out of the depression and how I feel and kind of curling up in a ball and crying and I suppose until I couldn't cry any more and then just kind of getting over it I suppose.

Did you talk to someone.

Yes I kind of had' I spoke several times to my head of year and she was very brilliant really but she understood everything. I mean she really did, she was great and I think most people went in there to cry to her [laugh]. She was great [laugh]. But yes, she really understood and she was fine with me just letting it go and I could just concentrate on art if it made me slightly happier because I really wasn't very happy at all with everyone just getting better and me just kind of sitting there and not understanding anything. Because that is how I felt. I felt that I was just, it was just all going over my head. And I was just sitting there like it was all, well in a foreign language basically [laughs]. But it was like all really really way over my head. Even though I should have been able to understand it I couldn't so [laughs] just gave it up, but yes. Just listen to heavy music really.

No-one explained to her classmates about her epilepsy and absence seizures. As a result some...

I mean when I was first diagnosed mum thought I was just day dreaming really and I was just blanking out and coming back again. I wasn't really - they weren't proper absence seizures. Well mum didn't think they were. They weren't ' she just thought I wasn't paying attention [laughs]. And kind of ignored me as well for it. But at school I was actually talking in my absence seizures and singing. Which actually my classmates thought was quite funny. But actually at school they all thought I was looking for attention with my'with my epilepsy, so '

Before you were diagnosed?

And, when I was diagnosed with the tonic clonic. I have only ever had one tonic clonic at school so '

Who said that you were looking for attention, your classmates or '

Well they, they kind of gradually moved away from me. Strayed away and I suppose not understood in a way, kind of what I am going through [laughs].

Even after you were diagnosed?

Yes [laughs].

And were your sort of'?

They were my friends.

Your group of friends at school?

Yes. I mean, and one of them, was my best friend and I thought she understood me but ' I mean she even saw me having a fit once, but ' and she is at college with me now. So I think she still thinks I am looking for attention, but '

She is not your friend any more?

No [laughs].

Okay. So there was a lack of understanding of your condition?

And in fact at [name] Hospital there isn't an epilepsy nurse, there isn't enough people to help get across the information that needs to get across that it is isn't '[laughs].

So no nurse went to your school and explained to the teachers '

No.

So who went to your school, your mum?

No body.

But the school knew?

Yes, but actually, I suppose my mum, I can't remember. My mum must have gone. Yes.

Okay. How did it make you feel at that time when you were 13 and these friends going away and leaving you?

Kind of what have I have done wrong, kind of a time when you need people and ' 

They are not there for you?

No.

Did you make new friends?

Yes [laughs]. I have got very good friends, I have got three very good friends.

Okay and you told them about your epilepsy?

Yes. They all understand me.

She feels that her mum can be 'a bit mollycoddly' and that she worries too much about her going out.

He agrees with me that she can be a bit mollycoddly. That is why I kind of want to move away next year because at uni. But it is kind of we have come to an agreement that I am moving away not too far but far enough that if I do need help and so, like [city], that if I do need help, if I have a funny turn then, if I do need her, I ring her, and she is able to just get in the car and come and pick me up. So ' [laughs] So I want that freedom just to get out of, be able to.

Yes to do what you want to do?

Trying.

Okay. So that's one of your difficulties at the moment?

Yes.

Okay. Do you talk to her or do you argue it with her? Or '?

Yes. All of the above [laughs].

All of them. I know it is difficult'

I make new friends and she doesn't believe that ' because I talk to my friends and I believe that all of my friends should know what to do in the case that I do have a fit. I am quite ' she knows that I am sensible [laugh]. But it is like she doesn't trust me. So it feels like a down on that, [crying].

So do you go out with your friends or she makes it difficult for you to out?

It is like I want to go for the first time clubbing this Wednesday and she is making it difficult for me. So I can kind of make my way back by getting a bus to my friends house and then like staying there for part of the night and then getting the morning bus back to here. But no, she is going to get up, I think, at 2 o'clock in the morning just to drive all the way to [city] where I am going clubbing and pick me up [laughs]. Just to make sure I am safe or something [laughs]. Which I suppose it is all right in some respects, but it is just '[laughs].

Has this always been the case or was it less of an issue when you were younger?

Well I didn't really go out so.

Okay.

And she doesn't know these friends as much as she did my old friends because I am with a new group now so they didn't know me when I was having fits you know. And I was diagnosed and then I was ' So they are a completely new group of people. So '

But they do know about you epilepsy?

Yes.

She knows that parents do care but they need to be less protective and let the teenagers grow up.

I suppose I guess just keep a brave face and keep smiling because it releases endorphins and it does make you happy in the end [laugh] Keep laughing and find good friends to unload your burdens on [laughs]. Even though they might not like it, it is a good thing to do [laughs].

Don't be scared [giggle] I think in the end you are just unconscious really [giggle]. Still live. Don't box yourself away [giggle]. Yes [giggle] I think.

Are there things you would like to know about other young people's experiences of living with epilepsy or any other health condition?

I think I am all right [laughs]. It would be interesting to know how other people have worked with their parents and ' in driving and got round that and how their parents have reacted to' like if their parents have gone all mollycoddley with them.

What advice would you give to parents?

I know you care about your children but you still need to let them breathe and grow up and [giggle] in a way you are probably scaring them more than ' you should be. Just as long as they have got a good friend with them they will be all right, or three [laughs].