Carole - Interview 11

Age at interview: 20

Age at diagnosis: 18

Brief Outline: Carole has temporal lobe epilepsy and was diagnosed at 18, after four years of tests. She is on Keppra (levetiracetam) 4000 mg per day and the seizures are fairly controlled at the moment.

Background: Carole is 20 and currently a part-time student. She is in a relationship and lives at home with her family. Ethnic background / nationality' White British

More about me...

Carole is 20 and a part-time student. She had her first secondarily generalised seizure around the age of 14. It took years of uncertainty and tests for her to get the diagnosis of temporal lobe epilepsy. She also sub-clinical seizures which may have caused some behavioural problems. She is on Keppra (levetiracetam) which has helped a lot to control the seizures.

Carole had a tough time in school. Due to memory loss, bullying and lack of understanding of her condition she eventually left school and went back only for the exams. Carole's epilepsy is caused by a scar deep in her brain which also has a huge impact on her memory. She says her memory loss is so bad that she has lost a whole year of her life. She also can't remember for example what she learnt on her course in college and she finds it difficult to monitor potential changes in side effects of medication as she struggles to remember what she used to be like.

Employment is one of the hardest aspects of having epilepsy for Carole. She works incredibly hard and; "puts in about 200% and only gets about 75% out”. Since she left school she has had about 25 jobs and says she has lost them all because of epilepsy. Similarly, Carole says that Disability Living Allowance is a tricky one - she has applied for it three times. She is now planning to go to university and hopes to find a focus for a career.

Carole hopes to have children in the future but worries whether her epilepsy might be hereditary. She has a very supportive partner who happens to have epilepsy himself. Carole has also found Epilepsy Action's local meetings very useful and a good source of information.

Carole found school incredibly difficult because of her epilepsy. She left school early because...

I found school incredibly hard. It was the fact that people didn't understand what on earth was going on. I eventually had to leave school early due to it when I was about, well when I had about six months to go, in year 11. I was quite a popular person and well as people know, the popular people are incredibly fickle, and once I'd got epilepsy there was a lot of sort of peer pressure on me sort of drinking and stuff like that, and I couldn't due to certain, well due to the epilepsy. And there were some certain incidents where I did drink and I'd go into a seizure and my friends found it incredibly stressful, they didn't understand at all about it, and I did lose all my friends due to it apart from a couple.

I found school incredibly difficult so I did leave, and it was also the memory loss. Because I had a complete blank memory due to it, I forgot like about a year of my life, I just can't remember it, it never happened in my eyes. People would sort of bully you about it and stuff like that so, it was in my best interest to leave, and then I just came back for exams. I actually, I put in a lot of effort to try and get exams but I did fail and I would put it down to my epilepsy because everything just completely changed. As a young person you don't really know what it is, I was having a lot of tests, like the brain scans and consultations and people going, 'Well is it her or is it something going on?' and it led me to have a lot of behavioural problems 'cos, before an absence I'd tend to argue, for no reason, and I don't even know that I'm in the wrong even though I would be. I would have a lot of mood swings and behavioural problems and just my confidence went downhill completely 'cos obviously sort of when you're, when things are happening to you that you don't know what on earth, the hell is happening [laughs] then it's very difficult.

Employment has been one of the hardest things for Carole. She finds it hard to know if, when and...

It's the initial looking for work, do I tell them? Do I not? If I tell them then I haven't got anything to hide but if I tell them then I might not even get the job to start with. If I don't tell them yeah I might get the job but now I have to try and dodge everything around what's going on in my life, like if I've got an appointment, I may have a wedding to go to. Now is that appropriate for work to lie, and specially where it's not a comfort zone job, like at the moment I'm a student so I don't really mind what I'm doing, you need to get more career focus you don't want to be living a lifestyle of having to lie and stuff like that. 'Cos I've been out of school so I have tried finding a career and it was just impossible.

Especially living in this area, it's not exactly an opportunistic place for young people so, yet again there's that barrier of where you live and their acceptance, the younger people and stuff like that. Also the barriers being narrowed, 'What can I do?' Obviously if you've wanted to be a truck driver all your life well all of a sudden that goes flying out the window. I personally, my sights weren't very high as a child, I wanted to be a teacher, so it wasn't like a rocket science or anything like that, I just wanted to be a teacher. Now it was, 'Am I ever going to get through the education?', I didn't know whether it was appropriate to work with kids, would I be allowed to work with children, then it was well it was the fact of when I was actually working, it was constantly getting fired, due to me not telling them. All of a sudden I would have like an absence or something like that and it was, it was back to the drawing board constantly. I think one thing that does highly frustrate me because I'm looking for a job now just sort of a weekend job and it's just the fact that yet again no one understands, like people's different reactions to you applying for a job and obviously now with our culture of suing, and health and safety that's made it a lot more difficult for well anyone with a medical problem to get a job. It's yet again, is it okay for us to employ you, and it's an incredibly frustrating with stuff like that.

After a couple of nasty experiences of having seizures when drunk, Carole has decided to only...

Alcohol when I was younger at school, I had a bad experience with alcohol, I did get drunk and ended up on a hill somewhere having a seizure. So I have, I do drink like I have a casual drink but I don't think now being older I wouldn't yet again push my luck with friends or anything, by self inflicting it on myself, by alcohol because I know getting drunk will give me a seizure. I also had another experience where I did get drunk and I didn't have it then but I had it during my sleep which was even more dangerous, so it's just not, it's not worth it, I mean it might be a bit sort of, it's incredibly tempting when you're around maybe sort of like a bunch of friends who have got a bit [laughs] you know a bit drunk in the pub or something, not like completely paralytic, but you know happy drunk or something and you're like, 'Oh, I can never get there.' It's really annoying and you always have to be the one to pick up the pieces cos you're not drunk and stuff like that, but, it's yet again, matter of fact, you can't do it, so. I'm, I don't go there.

Carole has always wanted to have children. She is concerned about the possible effects of her...

I've always, I mean I don't know other women, I don't know whether it's either you know or you don't know really, but I've always known that I wanted children. Not at that point, but I do want them later on in life and it was definitely the concern of. You hear certain aspects of, well it's also common sense I mean, if [laughs], being crude if you think about it as an oven if you're sort of baking a cake in a shaking oven it's not gonna work very well. So it's, it was at the very forefront of mind so I was always wondering about aspects of autism or maybe deformities physically in a baby. Then it was a very big fact of would I actually have children, if there was chances that I would have that, and being female I felt that I had to deal with that at a very young age. Like you shouldn't have to think about stuff like that because I've always been interested in it. I did get told that I can't remember the exact statistic that, but I did get told that well being epileptic I was at higher risk of having an autistic child, but only I think it was only slightly, but that still brought concern to me. And there was also the fact of have I got what is it, forgotten the word, sorry, you get it through families, hereditary, that's it, so have I got hereditary epilepsy as well. I mean, the only other person in my family with epilepsy was my father's sister, and that wasn't due to anything hereditary, but she had learning difficulties, which she had it as well, and died at a young age so I never actually met her, but that was the only other person.

Carole was sacked because her employers felt that her workplace wasn't suitable for her.

So do you think you have actually been fired because of having epilepsy?

Yes I have, I have in a couple of cases, I won't mention names, but I have actually been sent to like occupational health and I've been given, I think it's classed as redundancy money to leave cos I find that they always turn it back around to, 'It was, it's not appropriate for you to work here.' And I remember I enjoyed this job so much I was almost pleading with this person, 'Please' and she was like, 'I'm really sorry,' 'cos it was a multi national company, it was like, 'I'm really sorry, it's not in my power, it's the fact that you didn't inform us and now it's not appropriate for you to work here,' and it's almost the fact and it's just a vicious circle then. It's like, 'Well you wouldn't have employed me if you would've known, if you're gonna sack me because you now know.'

For Carole, it was a week's video telemetry that finally made her diagnosis clear.

I got diagnosed in 2005 and due to where the scar is on my brain they couldn't find it. I kept on getting sort of rejected for diagnosis because, one; they didn't want to diagnose it because they didn't want for me to have the label of epilepsy all my life, and two; after so many scans, they could not find apparently anything wrong with me. 

But they couldn't understand why I was having all the signs of it. And it was actually due to losing a job and going to occupational health, and he said, 'I think you've got epilepsy'. Yet again I was getting consultations and stuff and still absolutely nothing, and the last throw of the dice was video telemetry at a hospital in London. It's a constant EEG scan and videoing for a whole week, and I had to go up there and stuff for a whole week. They actually found out where the scar was on my brain, which was in a very awkward place and apparently that's why I get memory loss 'cos its actually round about where the memory is stored in the brain.

Carole had an absence seizure on a train but the ticket collector thought she was messing around....

I actually didn't, I'm going to admit [laughs], I tried bunking the train basically. I remember this man saying, 'Can I have your ticket?' and I said 'No I haven't got one can I pay for it?' and before I could say 'could I pay for it?' and I'd said 'No I haven't got one,' I had an absence and I froze and he thought it was the whole teenager 'I'm not gonna move, I'm not paying for my ticket' and I completely froze. Then he was sort of shouting at me and I fell on the floor and then he thought it had got even worse, you know I was not going to move. They didn't move the train and they were like 'This girl is causing problems,' and they actually, four of them came and physically carried me off the train and this police officer got involved and it got blown out of proportion. I was absolutely furious cos I was like, 'How dare you? I was having an absence.' And yet again, my sister kind of stepped and afterwards and came and the next day came and spoke to them and actually dealt with it in a very different [laughs] different attitude to me. I was just so furious and it's yet again that battle of not everyone's gonna know, they just thought I was being a petulant teenager not paying and not moving and stuff like that but. It's yet again another, another thing that just happens.

Carole talks about her experiences of job seeking and how tricky it has been to apply for...

It's just a constant fight, and hen you've also got the benefit side to it. If you're not at work it's a game of two halves whether you get accepted for certain benefits and it's just so frustrating about which one do I go for you sort of go along to the job centre and say, 'Hey I'm unemployed', or you could go on job-seekers, or have you got any medical problem, you could go on incapacity benefit, then they turn round and go, 'Well, you look normal, you can walk around so you're fine.' And it's like, 'Well the problem isn't in my physical appearance, or my physical capability, it's in my brain'. And with that, blooming disability living allowance, now that's a completely different story, that's just you're picked at random for that I swear, it's absolutely ridiculous. It is very hard to be employment and benefits, it's constantly a battle. I mean looking to try and maintain the job to getting people yet again to understand what sort of thing. I mean if you're sitting in an interview and you turn round to someone and say, 'I have seizures, I also have absences where I hallucinate, will you please employ me?' They're gonna, they run a mile, which is understandable, 'cos anyone who doesn't understand what it is, that's quite terrifying to someone. Especially if they're classed as being responsible for you, they don't want to know due to this suing culture that we've got.

Can you tell me more about the benefits-side, you said that's difficult issue as well?

Yes, I mean not so much the job seekers', I mean 'cos everyone's entitled to once out of work, but it's more the disabled one. You always get that question on whatever form you may be filling in, whether it's for I don't know for some sort of ticket for a concert or something, 'Are you disabled?' I never know what to put down because it's sort of, 'Am I?', it seems to be that you're disabled when convenient really, when it comes sort of like in certain jobs you're classed as disabled like you're not able to drive, therefore you're disabled. But when it comes to disability allowance well you're able to walk and go around in a normal way, so you're not disabled, so it's sort of when convenient for them really. And I've personally applied for a disability living allowance twice. I'm currently applying for it now, and I applied for it when I was a lot younger as well, when I was about 16 or something. When I had actually found out about it to begin with, you have to ask about it cos there is no given information about it. I got turned down due to not being, not being diagnosed so. 

I mean it's just ridiculous that benefit, there is no proper, how can I put it, there seems to be no set goals that you have meet to get it. And if you do meet them but certainly not, I mean, the problem with being epileptic, you're not so black and white as, 'Do you have problems in the bath when you're having a wash?', 'Yes I would have problems if I was having a seizure.' But maybe tomorrow I might not, but maybe the next day I might. I mean it's not so easy to answer the questions and to tell people that sort of information cos you just don't know. And there's no area for us to slot into, we can't fit into anything.

Carole has had many different neurologists and says they all have different attitudes. She...

I've had a variety of different neurologists, and different hospitals and stuff, 'cos like say I went and visited my gran and one [seizure] happened there and then I had to go to a hospital down there and stuff. I've had a variation of different hospital cares. There been various attitudes, I mean every neurologist is completely different. There was a certain person whose answer to everything was, 'Well that's irrelevant' before you asked a question. And then there was two people who are very very thorough and do everything sort of to the other extreme really so it just, it varies. You definitely have to say when you're unhappy because otherwise you're just not gonna get anywhere with your care really. So I recently got my neurologist swapped because I just wasn't getting anywhere with the progress in my epilepsy really so, just say when you're unhappy and when you feel that you've sort of hit the jackpot stay there [laughs].

Carole found her GP very helpful. She preferred asking about sex and contraception herself rather...

I've found that because the time was so precious that you were given with the neurologist I didn't really bring it [contraception] up with neurologists. My general practitioner was, I had him all the way through the whole course of the epilepsy even before I had it, because I've lived in one area all my life. I found him to be incredibly helpful because he was a new practitioner and he hadn't had an epileptic patient before, so he was just as interested himself. He would get a lot of the information for me, and being quite young and bringing up certain facts of about sex and stuff it was a bit embarrassing but it was something that needed to be said so he had to find, you just had to find out about it.

It is sort of climbing over that barrier of 'Is this embarrassing?' but they are, they're very helpful, I mean they, they're very professional people that can get information and know information so, asking, if you're brave enough to ask the question you will get the answer [laughs].

You always had to ask, you weren't told by them?

I had to breach the subject definitely because obviously people are different at that age, they don't know what situation you're in. I mean, they don't know whether you're homosexual or not, or whether you've got a partner or whether you are just sexually active so, I feel that it's, I think they're right not to breach the subject specially, like with your parents being there or something like that when you're younger, you don't really want them to so, I find them not breaching the subject I think that's okay. I think they do ask you occasionally, but if they can kind of tell if you don't want to go there or not so, but it, it is definitely important to get the information.

It took Carole four years to get the diagnosis of temporal lobe epilepsy.

You said you were 14 when you had your first seizure. What happened in all those years of trying to get a diagnosis? Can you describe why it took so long?

Well, there was as I said I had to get to three seizures before they would even investigate it because people do have seizures due to different things like trauma or shock or something like that, just people without epilepsy. So apparently that didn't take long cause I can't really remember, it was, a lot of people, a lot of talking to begin with, consultations, what's happening and people trying to figure out what route to take I suppose, because as it's not physical they can't, or there's not a specific problem like maybe diabetes it is in your blood so its, they know where to go from there, but with something mentally they don't know. Because there was also phantom epilepsy as well, where people like, where people don't have it but they think that they do so there's a lot of investigation at first. Then a lot of brain, then there was brain scans, like MRIs and stuff like that, as I said they didn't show up anything because it was my scar is not on the surface of my brain so they couldn't see anything, so as they couldn't see anything from there and there wasn't anything specific in my life either like usually it's something that happened at birth. Now my mother was ill during my pregnancy but there was nothing specifically at birth that would have caused it like umbilical cord round my neck or anything like that. I hadn't had any blows to the head, so they still don't know what caused it, so there was also a lot of you know discussion within medical people like, 'Oh well we don't really know what's going on'. So there was a lot of, I think there was a lot of things done, a lot of discussion done behind my back really, not about, you know sort of' within the medical profession there was a sort of lot of if's, buts, whys going on.

Carole says the diagnosis proved she wasn't 'making it up' and explained why she had a poor memory.

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.'