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Long term health conditions (young people)

Lara - Interview 03

Age at interview: 24
Age at diagnosis: 17
Brief Outline: Lara was diagnosed with myoclonic juvenile epilepsy when she was 17 years old. She became depressed and lost her confidence after diagnosis but she wasn't offered counselling. Her nurse has provided her with lots of support. Nowadays she jokes about her epilepsy giving it derogatory names and says that it is one way of coping with it. She has no problem in telling others about her epilepsy.
Background: Lara is a full time student nurse and lives in shared accommodation with three other young people. She has just recently moved out of the family home. Ethnic background/nationality' White.

More about me...

Lara was diagnosed with myoclonic juvenile epilepsy when she was 17 years old. She says that her diagnosis knocked her confidence and she did not want to tell people she had epilepsy in case they saw her as a 'freak' or a 'weirdo'. In retrospect she thinks that doctors didn't explain her condition to her at all well or provide her with enough information. She said that what was important for her at that time was to know was that she was going to be able to live a normal life. She says that doctors should give the message that epilepsy does not have to stop you from doing anything - providing you take certain precautions like having enough sleep, and making sure you take your medication. 

At 19 Lara decided she wanted to study nursing but first applied to work as a healthcare assistant to get some experience of working with patients. Initially she got positive feedback but after she disclosed that she had epilepsy she was made to wait 6 months before they reached a decision. It was quite a frustrating time because she really thought she would not be able to do what she wanted.

She has a supportive group of friends and one of them has been around on occasions when she had had seizures and knows what to do. Regarding travelling she says that it is important to travel with someone who knows you and knows what to do when you have a seizure and/or are not feeling well. In her experience, epilepsy does not have to prevent you from travelling. She makes sure that she always has enough medication and she listens to what her body is telling her.

Lara has experienced seizures twice when having sex. The first time she was in her teen years and thinks she didn't handle that incident very well and her boyfriend at that time 'freaked out'. More recently she has had another similar incidence but she is more knowledgeable about her epilepsy and was able to talk to, and reassure, her boyfriend that such incidents are very, very uncommon. She says that she has been able to again because her boyfriend now understands and accepts her epilepsy. 

Her mother has been very supportive and more practically and emotionally involved than her father. An aunt on her mother's side of the family also has epilepsy.

 

Knew very little about epilepsy. It is reassuring to meet other young people who have coped with...

Knew very little about epilepsy. It is reassuring to meet other young people who have coped with...

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Yes. It sort of, I, I knew about diabetes like before. So before I even did nursing or anything I sort of knew what it was. So, but epilepsy, I think there is quite a lot of stigma attached to it as being sort of a bit of a spastic sort of thing and, you know, quite debilitating and, you know, you have these weird seizures. And just understanding, understanding it. And it's quite unnerving, like with diabetes, it's something that's controlled by drugs, and whereas epilepsy, it's a bit more, you feel a bit more out of control of it in a way. Because it could happen any time, any place, anywhere. And that's quite, that's quite scary. And I think just meeting other people who've lived with it and coped with sort of having that fear in the back of their mind. Because I don't think it ever goes. Like you never sort of think, 'Oh, I'm, you know, it's always going to be fine. I'm never going to run the risk of it happening again'. Because there is always a risk. But just being able to talk to people who've lived with it and, and who do have it and still lead a normal life, I think that's quite important. Because you do think that you're not going to be able to do that. And I do think counselling is, is something that would be really sort of quite effective for people. And being offered that like sort of straight away, not being offered it like, 'Oh, here's a leaflet about counselling. If you want to go and have some, there's the number'. Like that, when you've, you're not going to take that help because, you know, you don't think you need it. But actually you do.

And I think it's quite important to recognise that however much you don't want to accept it, it's really important to accept it. And the sooner you can accept it the better, and the better off you will be in the long run. And, yes, I don't know, it's, it's really hard, because young people are really hard to get, get hold of. And particularly by adults. You don't want to talk to adults really, because they're adults and they don't understand and they don't know what it's like to be young and, you know, 'You, you were never a teenager. You know, you don't know what it's like for me'. And so I think, I think having other young people to talk to is more important than anything, because you will relate to them more. And, you know, being able to talk to someone who is also like struggling with the fact that, you know, they want to go out and go clubbing and stuff and they're scared about having a fit on the dance floor for example. Because that was really, that was one of my biggest fears. Because I love dancing and I loved going out clubbing and I really did think that it was going to sort of stop me from being able to do that. And you sort of go and you do it, but you still have the fear whilst you're there. And like it's quite difficult to just sort of totally let loose and go wild type thing. But.
 
 

She talks about the things she dislikes when she goes to see her consultant. But says that her...

She talks about the things she dislikes when she goes to see her consultant. But says that her...

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But I, one thing I find really annoying  when you go and see consultants is that they read you your history. And I'm like, 'Why are you reading this to me? I know. It's my life. I've lived it' you know. And they go through every like medical thing that happened in my life. And because I was a twin, and my twin died, like the fact that they'd always tell me that I found really strange, because it didn't seem relevant. They were like, 'Yes, so you were born prematurely. You were one of twins. Your twin died. Da-da-da. You had your first this here' you know. And it just, that has always bugged me about going to see the doctor, because I don't want to hear it really. Like it just seems a bit pointless. I feel like, 'Can you not read that, and then call me into your little funny room and ask me how I'm feeling?' Which I do find, like sometimes I do find what they ask you a bit like, like they say, 'How's your epilepsy?' Like I think that's a really weird question to ask. But I suppose there's no other way of putting it. Or just like, 'How are you? How have you been coping?' I suppose. 

And I, the new consultant, I've only met her once. And they often like seem like they're in a bit of a rush. Which is quite annoying. Like because you don't really feel like, because often, it's often after I leave that I think of something that I want to ask them. And then like, 'Oh, God, I'm going to have to wait for another six months before I go and see them again'. And the, who's the other one that I saw? The epilepsy nurse. And I didn't go to see her the first few, like I don't remember being, going to see her initially when I first got diagnosed. And actually that would have been the most helpful. Because out of all of them she has been the nicest person. And I found her the most helpful because she's much more chatty and like she just chats to you. And you end up, she ends up finding things out and being like, 'Oh, well, you could do this'. Or, because like I wanted to go onto the pill. And with a lot of epilepsy medications you can't go onto certain pills and, because some of them don't work or they're contradict, yes, you know what I mean, they don't, they just don't work together.

They clash with your medication.

Yes. And that, she was really helpful with that and finding me the right pill to go on and stuff. She was really good at talking to me about that, and also more recently talking to me about if I ever wanted to get pregnant. 

And if you have any questions, can you  contact your nurse?

Yes, yes. Now I can. I only saw, but I only started seeing the nurse probably four, four years ago I think it was when I first saw her. And she's been really helpful actually. And when I was having all my problems with getting employed because of my epilepsy, I spoke to her quite a lot. And I used to phone her up and ask her what, I mean because she was a nurse as well, and she said, when I told her that I wanted to go into nursing, she said, 'That's brilliant. Go for it. You know, don't let it, you know, don't let this stop you'. And she, but I found the epilepsy nurse really helpful. I thought she, out of everyone she's been probably the most sort of honest and upfront and like just kind about it as well. 

Like doctors sometimes can be quite clinical about things and sort of forget that you're a human being, and just see you as a condition rather than thinking about how your life is. That would probably be my biggest criticism of the consultants that I've seen is that a lot of the time they see you as your illness and not as your person. Which I suppose is really difficult for them because they see hundreds of people all the time. And, yo
 

She fainted once at her work (she has epilepsy) and had to go home and her colleagues accused her...

She fainted once at her work (she has epilepsy) and had to go home and her colleagues accused her...

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I was out of school. I had it at work. And that was, I had, when I was working for a clothes shop in town, I won't name the name because they're evil bastards, I fainted at work once and, I felt really jittery. And I was really, I started to panic that I might have a fit. So I said to my boss, I was like, 'I really think I should just go home'. And he was like, 'Well, go and lie out, go and lie in the stockroom and see if you feel better'. And so I did. And I didn't feel any better. And I didn't want to phone my mum and dad because they were both at work, and I knew that my friend was at home. So I said, 'I'm going to phone my friend to come and pick me up, because I need to go home, I need to go to bed. You know, I don't feel, I just don't feel right'. And I remember at work, all my work, well, not all of them, about three of my work colleagues said that I was skiving and that I was using my epilepsy as an excuse. And I went back to work the next day and my manager said if I ever did that again that he would fire me. And I looked at him and I was like, 'What? What, what do you mean?' He was like, 'Oh, I know that you just went off with your friend that day and you just went, you know, you just wanted to get out of being at work'. And I looked at him and I was like, 'You've been aware from the moment I started this job that I had epilepsy. I explained what my condition was to you. And I, you know, you saw me collapse at work. Like how...?' I was like, 'How can you say that?' And I looked at him and I was like, 'Well, if you do fire me, you'll be getting a letter from a lawyer because that's actually discrimination'. And he shut his mouth at that point. And I left that job quite shortly afterwards because I, like a lot of my work, like a few of the people I worked with were just like really, I just felt, I was so angry. I just couldn't believe that they'd, I was like, 'How, what, do you think I'm that much of an arse that I'd use something like that as an excuse to get out of a day out of work? I mean, come on, really. Like that's a bit pathetic'. 
 
 

She wanted to train as a nurse but because of her epilepsy she was advised to specialise in...

She wanted to train as a nurse but because of her epilepsy she was advised to specialise in...

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But when I was applying for jobs in the NHS, I went in for an interview to one of the wards and they were like, 'Oh, you sound perfect. Like, you know, it'll be great. Like you're obviously really enthusiastic. And you want to do nursing, so it's quite good, you know, it's a good way to do it' and all of this sort of stuff. And, and then you had to fill out an Occupational Health form and obviously you have to tell, you have to disclose any disabilities or whatever that you have. And I put down that I had epilepsy. And that put a massive spanner in the works. And it took them over, I think it was six, six months to give me an answer of whether I could work there or not. And eventually they came back saying I couldn't work there because I was too much of a risk, that I might drop a patient if I had a fit. Although I did explain to them that the epilepsy that I have only like affects me, well, not only, but I've only ever had fits in my waking hours. And my doctor said that that was the sort of epilepsy that I had. And so I, it really confused me. I was like, 'I don't really understand why, why you won't let me work here like'. It was, the six months that it took was, that was really hard, because I really felt at that point that I was going to be held back by this and that I wouldn't be able to go into nursing because of it. And that was quite, that was quite distressing. 

And I remember reading somewhere in the Disability Act, because when this was all happening I was like, 'They can't not give me a job because of my epilepsy. That's discrimination. Surely that's like against the law'. But the, I think the Disability Act was brought in 88, was it? I can't remember now. But I remember I looked into it because I was, it was really frustrating because I wasn't working at the time and I wanted to be working. But I wanted to do something that was going to be relevant to what I wanted to do with my life. And they, the occupational therapist said, you know, you know, 'We, we can make reasonable adjustments'. I think that's what they have to do. They have to make reasonable adjustments so you can work in a post. And they said that working on that ward would, would be dangerous. So she said there was an opening in the operating theatres for a healthcare assistant and that that might be better for me, 'Because you wouldn't be handling patients'. So I thought, 'Okay. Well, so how do I go about applying for this?' And she gave me all the information, I filled out the form, went for an interview. And I was at that point I was pretty sure that I wouldn't get it because of my epilepsy again. I thought they'd come up with another reason, saying that I might have a fit and, you know, fall on the operating table, you know, kill the patient or something. But I went to the interview and spoke, you know, had, you know, the two nurses that interviewed me were lovely and they were really nice. And I said, you know, that I'd had this sort of trouble in applying for the other post, on the ward. And they were, they were really nice, they were really nice and they were like, 'Well, that sounds very odd'. And most people that I spoke to thought that it was quite strange that their, you know, their reason for not giving me the job was because of my epilepsy. And anyway I got the job in the operating theatres and worked there for about two, about a year and a half, two years, and really enjoyed that.

And that sort of in my mind was like, 'Right, yes, I definitely want to go into nursing. Like possibly go to sort of being a theatre nurse'. But I thought, 'I'll do the general training'. And then applying for that I was like, 'Oh, are they going to tell me here again that I'm not going to be able to do it because I might drop a patient again?' And a friend of mine who was a nurse, I spoke to her about it. And it was like, you know, 'What, w
 

She was furious when someone she has just met made an offensive 'joke' about people with epilepsy.

She was furious when someone she has just met made an offensive 'joke' about people with epilepsy.

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And in fact actually that was one thing that, when I was travelling we met this guy, who, he ended up coming to India with us for a, for a few weeks. And I think it was the day, the day I'd had the fit, [name] had bumped into him in, in town. And he was like, 'Oh, where's Lara?' And she's like, 'Oh, she had a seizure. She's in bed, feeling a bit mashed up'. And he was like, 'Oh, what's wrong with her? Like, what do you mean, a seizure? Has she, she got something wrong with her?' And she was like, 'Oh, yes, she's got epilepsy'. He was like, 'Really? Oh, God, what a pain'. And like really quite weird, like he found it quite strange and like didn't really know how, after he found out about that I definitely felt that he looked at me in a different way. And I remember one evening he was quite drunk and he made a joke about, I can't remember, it's quite, what is it? I can't remember how, how the joke is told, but it's basically about putting someone who's having a fit in a bath and using them as a washing machine, like because you're having a fit. And like just a really stupid stupid joke and a stupid comment for someone who knows nothing about it to say, and particularly to say it to someone who's got epilepsy. And I remember feeling so, I was so angry. And like I went completely ape at him and was like, 'Who the fuck are you? Like how dare you make joke out of my disability. Like, you know, you don't understand'. Like, and it, that was really horrible and I felt really judged then and that really upset me and I just couldn't understand it. Like I was like, 'I can't believe you'd make a joke out of something like that. It's not funny. Like I can make a joke out of it, because it's me and it's my way of coping with it. But you certainly can't, because who are you? You don't know anything about it'. And that was, and he felt so awful after that. I remember after that, I remember that, because we were a bit drunk when we had that and I think I was probably quite mean to him, and I remember afterwards he was really apologetic and felt really guilty, but still definitely looked at me in a different way and was a bit more nervous around me I think.
 
 

When she was a teenager she felt angry and blamed her mother for her epilepsy but now their...

When she was a teenager she felt angry and blamed her mother for her epilepsy but now their...

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But I don't know. It's fine yeah. So I think that probably. I think because of where I was at before and then having epilepsy, having been diagnosed with it probably made her worry sort of ten-fold over those things. She was probably concerned about them before but then because the epilepsy happened she was even more like, 'Right I need to know where you are, what you're doing, who you're with'. You know, 'Exactly what's going on. Have you drunk anything?' You know, 'Have you taken your medication?' All of those sorts of things but. 

And again I was angry about being diagnosed with epilepsy and probably part of me did blame her a bit for, for like. Obviously it wasn't her fault [laugh] but you know I think, I think it's. You sort of look, you look to blame people when things like this, when, when bad things happen you look to blame other people for them so you don't have to sort of take any responsibility for it or even accept it. It's easier just sort of to pass it off and go. 'Actually you're the reason that this is happening to me and I hate you for that because you've made me have this bastard illness that is now going to follow me around like a shadow for the rest of my life.' And no one wants that. No one does like it's just not something.

It must have been hurtful.

For her.

Yeah oh I'm sure it was and I think again now because we have a good relationship and we can have more of an open conversation about my epilepsy and how it's effecting me and stuff because I think [sigh]. I don't know [sigh].

So how did you react when she said to you for instance, 'Oh you can't go out or I want to know where you are' or things like that?

Oh it made me not. Like everything that she said she wanted, I wanted to do the exact opposite and not, not phone her, not let her know what I doing. You know not tell her if I'd been drinking because obviously. Because she knew what triggers there were for me as well and she knew that alcohol was one of those and you know it's what a lot of [laugh] teenager do is go and get drunk. And she was probably really worried about that aspect and that, you know because I. You know I had, if you go out in a big group of friends and stuff. Like I could have been left you know if I'd have had a fit or something and someone hadn't have noticed you know because everyone was pissed out of their heads she'd have felt really guilty probably if anything like really bad had happened. So you know now it, I can understand why she wanted me to do all of those things. But at the time I just was, I just felt angry about it because it just, it seemed really unfair that everyone else could do what they wanted and I couldn't or felt I couldn't. But I still managed [laugh] I still managed to go and do quite a lot of, a lot of stuff really. And I think also like, I think she sort of did recognise a bit that when she was saying those things she could probably sort of recognise that it was making me more like push, you know more pushing her away. And I think it, you know, it's, it's adjustment. It's an adjustment for everyone. It's you know like having an illness like that when you're a teenager it doesn't just affect you. You feel like it does just affect you but actually it affects everyone in your family and everyone that's close to you because they're all going to worry. It's sort of unavoidable really but.

 

She used to think that her dad didn't care about her epilepsy but now she has a better...

She used to think that her dad didn't care about her epilepsy but now she has a better...

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And your father?

Yeah I didn't have a great relationship with my dad when I was growing up. And he didn't play like a, he didn't play such a big role in my life through my teens. Like it's not that we didn't get on so much it was more, because I didn't have arguments with him like I had with my mum. Like me and my mum would have blazing rows where we'd be screaming at one another and it was more that, like I just don't [laugh] sounds really stupid but I don't really remember him being like very involved in sort of anything about my life really. And certainly not about my epilepsy. I don't think he ever came, like my mum would be the one that would want to come to the appointments with me and stuff but my dad didn't. But then in saying that I don't know if that's because like my mum was, made herself more involved that he sort felt that he could take a back seat if you like. Because my mum likes to talk quite a lot and my dad's much more silent like he observes things. He's very observant I'm sure and. But when I was younger I didn't see that. Like I, to me it just seemed that he didn't care but I'm sure he did care but he just had, has a different way of, of showing it I suppose. But I mean now we've got a much better relationship and. But it, I don't. It's strange actually I don't think I've ever really spoken to him like in any sort of depth about my epilepsy or how it's affected me. Like I think my mum probably has much more of an understanding. But then I'm sure she tells him [laugh] so he doesn't, he doesn't feel like he needs to ask me because he's heard it from her.

 

She had a seizure when she was in bed with her boyfriend at his college halls of residence. Was...

She had a seizure when she was in bed with her boyfriend at his college halls of residence. Was...

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No one ever discussed that with me. No doctors ever spoke about sex and whether I could, and I have actually had a fit whilst I was having sex with my boyfriend. And that was horrible. I mean that, that totally freaked him out. After that he was like, 'I don't want to have sex with you any more'. Because I mean I can't imagine how that would be. Like for me it was quite horrible, but for him I think it was worse. Because, you know, sex is something that's meant to be enjoyable and, you know, it is enjoyable most of the time. But it did definitely, like I wasn't so freaked out by it because it, you know, I'd already had, how old was I, how old was I? I think it was about two years after, a year, two and a half years after I was diagnosed that that happened. And it was with a boyfriend, I'd been going out with him for about two months maybe. And after that he was, yes, he was so freaked out like he didn't want to, he just didn't want to have sex with me at all. And that was quite, that was really horrible actually. Because it's like, 'But there's nothing, you know, wasn't that bad, you know, You didn't have to have the fit. I did'. And like, but it did definitely affect our, our sexual relationship majorly. Like after that I think it took him about a month or so. And for a guy I think that's quite controlled. And even after that I think he was really quite nervous having sex with me. Like I think it was quite scary for him. And I don't, it doesn't worry me any more actually. It did.

And it's happened once since then, with my boyfriend now, who I've been going out with for three and a half years. It happened I think eight months into our relationship. And that was, that was actually worse than the boyfriend before, because I think I was more in love with this one, well, I am more in love with him. But also we were at his halls of residence in London, because he was at university in London and I used to go up and stay with him all the time. And, yes, we were, we were having sex and I started to have a fit. And like I don't think, he'd never seen me have a fit before and like, poor guy, it must be so horrible. I can't imagine what it would be like really. But, yes, it was quite weird, because he was quite freaked out and went to go and get one of his housemates. And afterwards I was quite angry with him actually because I was, you know, naked on, like on the floor. Because I think he'd rolled me onto the floor on his duvet because I was hitting my head on the wall when I was having the fit. And, yes, three of his housemates came in and one of them was a guy and I was like, 'You fucking bastard. Like I, you're, you can see my naked. That's fine. But I don't really want people I don't actually know to see me naked. It's quite, you know, not very nice'. And they, he called an ambulance. And they came up into the halls and like the ambulance men came in and I was just lying on the floor and like, 'What the fuck?' I couldn't work out what was going on. It was really, it was just like, 'What's happened? Why are all these people in here? Like I don't understand at all'. And he put, he put me in a T-shirt and a pair of his jeans. And they put me in one of those stupid wheelchairs. And I hate, hated being put in a wheelchair. I was like, 'I can walk, thank you. I'm not disabled. Like I may have had a fit but I'm not completely...'. Although actually to be fair I probably couldn't have walked down all those flights of stairs. But it's sort of like, being put in a wheelchair is quite stigmatised in a way. And people, you know, like having to go through his entire halls of residence and like be wheeled out the front door with  the security in his halls and all the secretaries all like looking, like, 'Oh, what's happened there?' you know.

And it was re-, I was like, 'Oh, fuck, this is so embarrassing. I really don't want this
 

After she had a seizure while having sex with her boyfriend she talked and reassured him that...

After she had a seizure while having sex with her boyfriend she talked and reassured him that...

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And tell me more about your relationship with your boyfriend, with your current boyfriend.  Was he freaked out'

Yes.

'in a similar way that your other boyfriend was?

Yes, definitely.

Was he put off sex?

Yes, he was. But I, I sort of explained to him a bit more. And I think I looked up on the Internet. And there is, it, like with having sex it's something about like with brain stimulation that can trigger having a seizure. I don't, I can't remember, I, it was, you know, a few years ago that I looked, looked it up now. And I sort of explained to him, you know, that the chances of that happening every time we have sex are pretty slim. And it's not happened since then. It's only happened that once.

So once in three and a half years?

Yes. So, you know, really that's nothing. And...

He has seen you having fits?

Only that time.

Only that time?

Yes. So it might, you know, even more, like I think if he'd have seen me have a fit before, it probably wouldn't have been so scary for him. But because it was the first time he'd seen me have a fit, I think it was probably more scary. Because I don't think he's ever seen anyone have fits before that. Like I, when I was at college I had a friend who had epilepsy. And so I've seen people have fits and I know how horrible they look when, I know how horrible I look when I have a fit. And that, that freaked me out quite a lot, that he'd seen me look so weird, you know. Because, you know, sort of dribbling and foaming at the mouth and stuff, and like your body going in tonic-clonic seizure, it's not, it's not very attractive. And you don't really want your boyfriend to see you when you don't look attractive.

Did you talk to him?

Yes, yes, because I think, because I was more stable about my epilepsy, because I felt more, like because I understood it better and I'd lived with it for a few years and I hadn't, you know, I'd got over all of my anxieties about it so much. And I think that made it easier for me to explain to him that it was okay, like and, 'It's not, it's not, nothing to be scared of. And, you know, I'm not, it's not, you know, it shouldn't stop us from doing anything'. And that's like my biggest thing with epilepsy, is that I don't want to let it stop me from doing anything that I want to do in my life. And it hasn't so far. Other than the job that I initially applied for, it hasn't stopped me doing anything.

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