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Catherine - Interview 02

Age at interview: 29
Age at diagnosis: 15
Brief Outline: For many years Catherine stayed on a treatment that was not successfully controlling her epilepsy. And as a teenager she didn't know much about the different medications available. In her early twenties her new consultant put her on new medication that has improved the overall management of her condition.
Background: After reading Theology at university Catherine went to work for an epilepsy charity and now works as a trainer for a Department of Health funded project. Single. Ethnic background/nationality' White British.

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Catherine was diagnosed with epilepsy at the age of 15. Her father has epilepsy so she grew up knowing about the condition but was shocked to be diagnosed with it. At the time she would have liked to have had more information about epilepsy and more opportunities to ask questions. She didn't know much about the condition until she moved to her current consultant who is an epilepsy specialist, she also learnt more after university when she started working for an epilepsy charity. 

After she was diagnosised the fact that she had to take medication every day made her feel different to other teenagers. Her medication made her put on weight but the medical staff did not warn her about this possible side effect. She said that back then she had low self-esteem, but didn't want to discuss the weight problem with her consultant. She stayed on the same tablets for a number of years but her current consultant changed her medications because it was not working (preventing her seizures). Until then, she did not know that there were different medications and you should ask for the one that controls the epilepsy best. Her new treatment means that she lost the excess weight and has only had one seizure in two years. 

Her family's attitude was for her to do all the activities that other young people her age where doing' school, sport, going to parties, etc. She thinks that although her parents were worried at times they did not prevent her from doing the things she wanted to do.

Her school work was only affected when she had a seizure because she would sleep for the rest of the day, but in between seizures her school work was not generally affected by her condition.

As a teenager she had concerns about issues such as drinking alcohol and sex but was too embarrassed to ask, and unfortunately these issues were not raised by her medical team. Since she was 17 however, at every appointment she has had her doctor raising the issue of family planning and contraception because some of the medications for epilepsy do carry a higher risk for the unborn baby. 

Having seizures in front of people, particularly those of her own age, made her feel very different and embarrassed especially during her adolescent years. In her experience people who know she has epilepsy are very good about it, including her boyfriends. Those who were unkind to her did so in relation to the side-effect of the medication (overweight) rather than about her seizures. Since going to university she has found it easier to talk to friends and family about how she feels.

 

Her father has epilepsy so she grew up with somebody with the same condition but her own...

Her father has epilepsy so she grew up with somebody with the same condition but her own...

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My dad has had epilepsy since he was 9. So it's something that I've always been aware of and I've grown up knowing about. But when I was 15 I had my first seizure, which was what's called a generalised seizure, where I fell down and shook, you know, losing consciousness for, for a couple of minutes and then coming round and being very confused.

It was a real shock when I was diagnosed, or certainly when I had my first few seizures. Because with a lot of conditions you can tell there's something wrong. You know, you might have pain or you might have fatigue. But certainly with my condition, it just happened. One day I was okay, and the next day I was somebody with epilepsy. And that was a real shock. You know, even though I'd grown up with somebody in my family having it, it's very different when it happens to you.

So I was diagnosed through going to a paediatrician and having various tests. Looking back, the tests, you know, all went in a bit of rush, because I was diagnosed pretty quickly. And to be honest I don't remember too much about the tests. I wasn't actually given that much information about the condition at the time. Partly that didn't bother me, because I'd grown up knowing about epilepsy. But I know now that there was a lot of information that, that I should have received, but I didn't. You know, nobody actually told me what epilepsy was. Which, you know, when you think about what a complex condition it is, you know, no doctor actually said, 'This is why your brain's acting like this'. Which, looking back, you know, it was really surprising. So really it was a case of being diagnosed and given medication and saying, 'Okay, you know, come back in a few months and we'll see what happens'.

 

She lacked basic information about epilepsy and its treatment. It was only when a new doctor...

She lacked basic information about epilepsy and its treatment. It was only when a new doctor...

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Which other type of information would you have wanted from the doctors?

I think just basic information about what the condition was, and more information about treatment as well. With epilepsy and with a lot of the other conditions there's multiple treatments. You know, with epilepsy there are about maybe fifteen different drugs. And some will work for some people and, you know, others will be more suitable for other people. And I never knew that when I was first diagnosed. I was given one tablet, and I just assumed that was the best tablet and that was going to work. And I didn't know that there were other options. So for many years I was just on a couple of tablets and I didn't really push for anything more because I didn't really know there was anything better. And it was only when I met my current doctor, who provided me with more information, that I went on to a different treatment that, that really improved the epilepsy. So I would have really valued more information about what it was and about the medications, about what I was entitled to, how they could help me, that kind of thing.

So the weight problem you had, that went on for quite a while?

Yes, that's right. Because I stayed on that treatment for a number of years. And again I didn't realise that, you know, I could have, chosen a different tablet and the weight wouldn't have been an issue and, you know, I wouldn't have had to be unhappy for so many years because of it. So, yes, that went on for quite a while. And I do wish that I'd brought it up with my doctor and, you know, we could have changed the tablet and maybe not had those problems. So, yes, when I came off that tablet and chose another one, I lost a lot of that weight. And it really improved things. You know, I got a lot of self-esteem back. So that was a good time.

 

Her medication for epilepsy (Epilim) made her gain weight, but she felt too embarrassed to...

Her medication for epilepsy (Epilim) made her gain weight, but she felt too embarrassed to...

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Well, certainly having to take medication every day, every morning and every evening. And that is a big change. You know, it's not something that a normal teenager has to do. And it does make you feel a bit different. That if you have, if you go to a sleepover or if you stay at somebody's house, you know, you have to take these big tablets and nobody else does. Also the tablets had side effects and they, they made me put on a lot of weight. Which, when you're a teenage girl, is something you don't want at all. And I blew up like a balloon, you know, with a lot of weight. But that was something that was never discussed with my doctor.

They never told you or warned you that you might put on weight?

No, they never warned me it was a side effect. And I never spoke to them about it. I was really quite embarrassed about it. So it was the last thing I was going to discuss with my doctor, that, 'Hey, I'm really fat and I'm getting picked on because of it'. I know now that, you know, I should have told my doctor that it was making me unhappy and that we could have tried something else. And that's what I would do now. But as a teenager I didn't, I didn't feel like I was able to do that. So, so that affected me.

So the weight problem you had, that went on for quite a while?

Yes, that's right. Because I stayed on that treatment for a number of years. And again I didn't realise that, you know, I could have chosen a different tablet and the weight wouldn't have been an issue and, you know, I wouldn't have had to be unhappy for so many years because of it. So, yes, that went on for quite a while. And I do wish that I'd brought it up with my doctor and, you know, we could have changed the tablet and maybe not had those problems. So, yes, when, when I came off that tablet and chose another one, I lost a lot of that weight. And it really improved things. You know, I got a lot of self-esteem back. So that was a good time.

 

Only when she saw an epilepsy specialist was she given effective drugs. Since then she could...

Only when she saw an epilepsy specialist was she given effective drugs. Since then she could...

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The reason I came off the tablet wasn't because of the side effects, it was just because it wasn't working. And when I was a child, often you'll see a paediatrician. So you won't see a specialist or even a neurologist. You know, you'll just see a standard paediatrician who doesn't really have the in-depth knowledge. And when I was 18, again I saw a general consultant. So somebody who didn't have the in-depth epilepsy knowledge. And so I just stayed on that treatment. They didn't really bring up the weight as an issue. And again because I felt embarrassed, I didn't bring it up either. So it was just when I found out, or when I found a specialist, they then realised that the tablet wasn't working, that there were other medications that they could try.

In which way, it wasn't working?

The aim of the tablets is to control the seizures completely. So to stop a person having seizures. And again that was something I didn't know. I didn't know that it was possible to stop these things completely. You know, I, I guess I just thought, 'People with epilepsy have seizures'. You know, none of the doctors ever said, 'We're going to get rid of these things' or, 'We want to get rid of these things completely'. So the aim of the tablets is to do that. And the medications that I were on weren't doing that. I wasn't having many seizures, I was maybe having like four a year, something like that. But it was four too many. So eventually my specialist took me off that medication and chose another one that, that made me have less seizures.

So it's improved, things have improved.

Things have improved, yes, yes.

Another issue when I was younger was the driving. Because having epilepsy, or having seizures prevents you from driving. You have to go for a year without having a seizure until you can get your licence. Now loads and loads of people with epilepsy are controlled with their medication and they do have their driving licence and they've been driving for years. But at a time that, you know, I wasn't controlled. So all of my friends were starting their driving lessons and they were passing their test and, you know, getting their cars. And, and I wasn't able to do that. So I did feel quite isolated actually. And having to rely on people, having to rely on my mum, you know, for many years. It's not nice to, to have to keep asking people to take you places. So I'd really given up hope to be honest of ever being able to drive and ever getting my epilepsy under control. But then I met my specialist and we tried a new medication and it actually stopped the seizures. And I was able to get my driving licence. And that was something that I never ever ever thought would happen.

 

She was made aware of the importance of using contraception when having sex because the drug she...

She was made aware of the importance of using contraception when having sex because the drug she...

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Again when you were a teenager, did they  talk to you about contraception?

Yes, they did, because that's quite a relevant issue for, for people who are taking medication. And one of, one of the things about my medication is it makes the pill less effective. So if I was on the pill, I would need to take a stronger pill because of my other medication. So, yes, they did bring that up. It was quite embarrassing because my mother was sitting next to me. And there was this 50-year-old guy talking about sex. And you just want to die, and just forget about it. But, yes, they did bring that up, yes.

Did they explain it to you in an easy-to-understand language?

They explained, you know, that, that it was an issue. So, yes, they explained it very quickly. And later on, you know, I found out information or I found leaflets perhaps from the voluntary organisations. There's a lot of information on the Internet. So they explained it very briefly. It was a, more of a kind of question and answer, 'Are you having sex? Are you on the pill? This is what you need to know'.

How do you answer with your parents there?

Absolutely. You know, it's incredibly embarrassing. But absolutely. I mean I was, when I was diagnosed I was 15, so I did have my mum sitting next to me. I guess when I was about 17 maybe, I started having appointments by myself. And then when I was 18, 19, I went over to an adult consultant. So again, you know, the appointments were by myself. And it was a lot easier to bring up those kind of subjects.
 
 

She does drink alcohol and it doesn't affect her but she was worried about her epilepsy and...

She does drink alcohol and it doesn't affect her but she was worried about her epilepsy and...

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Because I was 15, it's the time during the teenage years where you're experimenting with, you know, maybe drinking or you're staying out late, and I was worried about that as well. You know, 'What was going to happen if I had a few beers, you know, like the rest of my friends? Was something going to happen? Was my epilepsy going to get worse?' That kind of thing. So, so, yes, I had worries about that.

Did anybody explain to you about  drinking and, and epilepsy. What it would happen?

No, no. I mean I guess with, with a lot of conditions, it's difficult, because it's so different for everybody. And often it's a case of kind of finding your own way and finding what affects you. So in my case, you know, having some alcohol, I don't know if I am able to say this, having some alcohol doesn't present a problem. For another person it might present a problem. But for me personally it doesn't make my condition any worse. So...

For me, you know, alcohol doesn't, doesn't present a problem. Which, which is good. But certainly it was a concern, you know, when I was first diagnosed.

 

She was diagnosed age 15 and found doctors talking to her mother instead of her. She would have...

She was diagnosed age 15 and found doctors talking to her mother instead of her. She would have...

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Certainly at the beginning, yes. You know, when I was 15 and my mum was going into the consultations with me, yes, most of the information was going to her rather than me. 

How did it make you feel? You were in the same room and they were not talking to you but to your mother.

Not great. You know, I didn't really feel like I was part of the consultation or part of the decision-making process. You know, I was the one who was having the seizures and taking the tablets, but I wasn't really involved in.

Just having it.

Absolutely, just, you're the one that had it but, 'Don't talk'. I think throughout I would have wanted more information  and I would have wanted more opportunity to ask questions. Because it is a complicated condition  and, you know, it's difficult to, to get your head around. So I would have wanted more opportunity to ask questions. When I was a teenager I think I would have appreciated some time in the appointment without my mum there, and maybe to have discussed the more embarrassing topics like sex and like alcohol, you know, without my mother there. And I think more information about different options. 

And what about the language they use when communicating with young people? Did they use an easy-to-understand language? Or did they use long words?

I guess it varies from consultant to consultant. A lot of doctors I think do use terminology that maybe young people, and also adults, don't understand. You know, there's a lot of different words for seizure for example. And somebody might call seizures fits and somebody else might call them something else. So if the doctor is using terminology and isn't explaining it to you, it can be very confusing. So I think if there is something that the doctor is saying that you don't understand, then not being afraid to just say, 'Excuse me, can you just explain this?' You know, it doesn't mean you're stupid. It, it just means that, you know, you don't have a degree in, in brain surgery, you know.
 
 

She knows that if she does want to get pregnant she will probably have to change her treatment to...

She knows that if she does want to get pregnant she will probably have to change her treatment to...

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Yes, yes, because the tablets for epilepsy carry higher risks to the unborn baby. So there are issues for young women. You know, if they do have children and they're on certain medications, there are higher risks. So the doctors might want to change the medication or lower the medication. And it is something all the doctors are talking to all young women about. So, yes, I mean ever since I was maybe 17, every appointment it's something that they bring up and say, you know, 'Are you planning to start a family?' Or if I'm starting a new medication, you know, they discuss the risks associated with it or say, you know, 'If you do want to start a family, we might have to think about different treatment' and that kind of thing. So, yes, that's always something that's very very relevant.

 

Says that a seizure can sometimes disrupt your social life and that plans and activities would...

Says that a seizure can sometimes disrupt your social life and that plans and activities would...

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Yes, and, and that did happen. You know, sometimes we'd have things planned and then I'd have a seizure and we'd have to cancel our plans, you know, for the rest of the day or for the, for the rest of the weekend for example. There was one time where I was planning to go and see my boyfriend in the north of England. I was going, planning to spend a weekend with him. And on the Friday I had a seizure. So, you know, for the rest of the weekend I was wiped out. So I wasn't able to do that. So, yes, sometimes the seizures did disrupt my social life. It meant that I had to rearrange my plans. And because they were unpredictable, you know, it was disheartening when you make plans, you maybe plan events, you know, months in advance and then at the last minute you have to cancel your plans or you can't go to this party or this trip, you know, that your friends are going on.
 
 

Her worries about her epilepsy faded when she went to university. She started to accept her...

Her worries about her epilepsy faded when she went to university. She started to accept her...

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And at university, did you have any difficulties?

Yes, well, at university I had a great time, I had a great time. I partied hard. I maybe didn't work so hard, but I partied hard. And I did everything that everybody else did. I think maybe at school I was a bit worried, you know, 'What's going to happen if I go out to the pub? Or if I stay out late? Or if I have a seizure in front of people? You know, I'm going to be so embarrassed. I can't do this, this, this'. And once I got to university, you know, things really changed. I maybe accepted my condition more. I thought, you know, 'I'm not going to spend my life worrying about my condition and I'm not going to let it get in the way of things. Yes, I know that I have to take my medication and I know that I have to get eight hours' sleep. But I'm not going to let it stop me going out with my friends and all the kind of things you do as a student'. So, yes, I, I still had seizures throughout university and again sometimes they did impact on my plans or sometimes they did affect my work. You know, for example if I had an essay to hand in and I'd leave it until the last minute and, you know, and then I had a seizure, yes, that did affect my work. But it was just part of life. You know, it didn't stop me as I said partying or going out with my friends or having a boyfriend or anything like that.

But when do you started to talk to your friends or relatives about how you were feeling?

I guess like I said when, when I got to university. I think the change between school and university for loads of young people is a big one. You know, you're going out and you're doing things on your own. And you're away from your family, often for the first time. You know, it's a big emotional change. And like I said my attitude to my condition changed as well. So it was maybe then that I started talking to my friends and family a bit more and talking to my doctors a bit more about how it was making me feel and what I wanted and what I didn't want.

So it's from the age of 19 onwards?

Yes, yes, 18, 19, yes.

 

She discloses her epilepsy but adds 'controlled by medication' or 'one or two seizures a year' on...

She discloses her epilepsy but adds 'controlled by medication' or 'one or two seizures a year' on...

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In my experience the employers have been very very good. I think certainly that is a worry for young people. 'Am I going to be able to get a job because of my epilepsy?' And there are a few jobs that people with epilepsy can't do. But it's a very few jobs. It's things like being a pilot or being an ambulance driver for example, or being a lorry driver. It's, there are very very few jobs that people can't do. I think people worry that, 'If I put epilepsy down on the form, am I going to be prejudiced against? Is the employer going to look at me differently?' And legally they shouldn't do that. They shouldn't be able to discriminate against people because of their epilepsy. What I would tend to do on an application form is tick the box to say, 'Yes, I do have a condition' or, 'Yes, I do have epilepsy' but then just to write by the side, 'Controlled by medication'. So you're telling the truth but you're also giving them a bit more information. So, 'Controlled by medication' or, 'One or two seizures a year'. So they've got the information there. They know how it's going to affect your job, if indeed it is. You know, maybe that it's not going to affect your working life. For example some people just have seizures in their sleep. So it's not going to affect the time spent at work. So I would put a little bit more information on the application form. But I would certainly admit that I did have it.

 

She says that because her father has epilepsy, her parents knew what to do and she wasn't...

She says that because her father has epilepsy, her parents knew what to do and she wasn't...

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Yes I mean because our family knew a lot about epilepsy because of my dad, it was maybe different to it being a completely new thing. So my parents were good in that respect in that they already knew what to do, you know, if somebody had a seizure for example. And they were very good in that they didn't try to protect me or overprotect me. You know, like I said, I still went to school, I still went to parties, I still went swimming or rode on my bike for example. And I think partly that's because my dad had grown up with epilepsy and my dad had done all of those things and, you know, had a regular job and, you know, did, did all the same activities as other people. So they didn't try and overprotect me. Which was really really good. I think the fact that they said, 'Okay, it's, it's okay for you to do these activities' made me think, 'It's okay for me to do these activities'. If they'd worried and voiced their worries, then maybe I would have worried more.

 

Listen to what young people are saying but also listen for what they are not saying. Ask...

Listen to what young people are saying but also listen for what they are not saying. Ask...

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I think doctors and nurses need to be sensitive to, not only to what young people are saying, but to what they're not saying. Because there are a lot of issues that, you know, it's embarrassing to talk about. Like your body and like sex and like alcohol. And there may be a lot of issues that are upsetting young people, but that they feel too embarrassed or too intimidated to actually tell their doctor. So while I appreciate that doctors and nurses aren't mind-readers, sometimes asking questions and saying, you know, 'Is this an issue?' or, 'Have you ever thought about this?' sometimes just putting the question in can encourage the young person to talk. I think as well being conscious to talk to the young person rather than to their parents. And being conscious of the parent's attitude, if there is a parent who's maybe being overprotective or who's not letting their child speak for whatever reason. Being conscious of that and maybe giving the young person some time on their own.

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