Epilepsy in Young People

Driving, transport and travel with epilepsy

Here young people talk about driving, the use of transport, travelling and holidays and if they felt having epilepsy had affected these areas of life.

Driving

Many young people we spoke with didn't have a driving licence or couldn't drive because of epilepsy. Some had never learnt to drive, others had had to hand in their licence when they were diagnosed. A few had got their licences back after being seizure free for the required 12 months.

For some, not being able to drive had been the most difficult aspect of having epilepsy and they had been very upset when told they couldn't drive. Many said the hardest thing about not driving was the loss of independence. One woman described losing her licence as 'having my right arm cut off'. People usually got lifts from friends and parents but most said they didn't like relying on others. Many described how they were counting the weeks and months for being seizure-free for 12 months and being able to apply for their licences.

Kirsty had just bought a new moped and was 'devastated' when she was told she couldn't drive...

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Age at interview: 20

Sex: Female

Age at diagnosis: 19

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

And how do you get around that now?

I can't really. If I need to go out I'll phone my friends, say, 'Oh do you want to go for a drive, I need to get out', or I'll just go for a walk and say, 'I'm just going out for a minute'. I'll go to the shop or something, and just go for a walk to the park and have a sit on the swing.

And how does that affect you that you have to rely on other people?

Yeah, that's quite annoying because I'm a really independent person, really. Like before all this like I used to hate people like, "Oh, I'll give you a lift", I'd be like, "No, I'll go on my bike." Or I'll go here, I'll meet you there on my own, I'm fine going places on my own, but now, I do rely on people quite a lot, like I'm never really on my own. If I need to get somewhere I have to like phone someone and like ask for them to give me a lift which I hate doing, I feel like they might think that I'm using them. If I say to them, "Oh, I'm really sorry, I don't want you to feel like I'm using you," they'll say, "No, it's totally fine, because we understand that you can't get around without us anyway." Otherwise I'd be locked in my room [laughs] all the time.

Does it annoy you still, even though they understand?

Yeah. I hate depending on other people. I really hate it.

Were you like that before you found out you had epilepsy as well?

What, depending on people?

No, happy just doing your own stuff?

Yeah, yeah. I prefer doing my own stuff, my own thing, on my own. But now, like even if I want to go shopping or something I need to get, like I can get buses and stuff, but I hate public transport [laughs] I'd prefer to be like on my own, driving. 'Cos it's so free.

Alistair has been counting the weeks before he can drive again. The previous year, he was seizure...

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Age at interview: 18

Sex: Male

Age at diagnosis: 16

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When I turned 17 straight away able to drive, legal age for driving. I knew I couldn't drive straight away then because I'd had a seizure not lot before. And then, going on 50 weeks clear, thinking that I'll apply for my license. I thought, just around the corner, I just had two weeks to go and I can start driving and then a pretty serious situation happened, ended having a seizure and it did upset me. Then I had to wait another year. But now time is going on. Two more weeks to go, fingers crossed, as long as I take my medication and things like that. Not let things get on top of me, try not to get too stressed out. And just think about what caused them in past. Like stress was main one so I've got work and I've taken it easy, and make sure me tablets are taken on time. And touch wood me license will come through the door one day soon.

Having no licence also posed practical challenges for many. For those who lived in a rural area or a small town with poor public transport, getting around without a car was tricky and required a lot of planning ahead. Being able to drive was also important when looking for work outside people's home towns or for getting around easily to study placements at different locations. One woman who had a child said having a car is much more practical when getting around with a baby, pushchair and shopping bags.

Many young people said that having a driving licence was about more than just being able to drive - about being able to do the same things as their friends and a sign of being an adult. People felt it was hard to miss out on something most of their friends were doing. A few pointed out that a licence was also a handy ID to have. One man said, when he finally got his driving licence “It was so good holding that thing and it lives in my wallet, you know, I'm actually part of the crew now.”

A couple of people also felt it was frustrating when others kept asking them why they didn't drive yet and they didn't want to say it was because they had epilepsy. One man said he'd always been interested in cars and motorsport and found it hard to wait until his seizures were controlled before he could learn to drive.

Not being able to drive was frustrating but a few people pointed out that they totally appreciated why they couldn't and that it could be dangerous, for them and others, if they had a seizure while driving. One woman said, “I wouldn't want myself driving out on the roads.”

A couple of people, who had lost their licence when they were diagnosed, had been seizure-free for long enough to get it back.

When Clair got her licence back she worried in case she'd forgotten how to drive. Now she feels...

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Age at interview: 22

Sex: Female

Age at diagnosis: 19

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I think the biggest thing was they said I couldn't drive anymore that was the biggest thing because that was sort of my freedom at home. It's not that easy to get around places here so I just felt completely, because I've been driving for two and a half years then, so I just felt completely lost when I couldn't drive. So yeah I was quite upset for a while.

I was really scared [when she got her driving licence back] and thought, "How will I ever remember [laughs] how to do it", but actually it's just like riding a bike you can just drive again. But I definitely did for the first few months I was just like, well I don't feel I should be driving [laughs]. Because it had been so long since I didn't I kind of was, it was a bit hard to believe that I could just get in the car and drive again so. But yeah it was nice, I could go and do things. 'Cos I keep my horses about half an hour and there's no buses and no trains I was always relying on my mum to take me there and bring me back. 'Cos she works there I used to have to go with her to work and then spend the whole day and work with her and then come back again so it was quite difficult. So yeah getting my driving licence back meant that I was sort of free to do what I wanted.

For some, not being able to drive was no problem at all. They said driving and having a car is so expensive that they couldn't afford it anyway. They preferred public transport because it's convenient, especially in big cities, or because it's more environmentally friendly. Some said they just weren't interested in learning to drive.

Public transport

Many young people used public transport instead of driving themselves. Those who lived in bigger cities actually preferred using buses, trains and the tube. Most people had a free or subsidised bus or train pass, which entitled them for free travel (see our 'Practical matters document on the resources page' for links to more information on this). One man said that he's fine using public transport in cities but if he wants to go out to the countryside he needs lifts from mates.

Charli has a freedom pass which allows her to use all public transport for free. She doesn't mind...

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Age at interview: 23

Sex: Female

Age at diagnosis: 18

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I did give up my driving licence. I've been fit-free for a year now so I've got it back, but while it was with the DVLA I actually wrote to my local council and got a freedom pass because I needed to get [son's name] to nursery and stuff. I needed to get about basically and because they'd taken my driving licence I didn't have the means to go out to get about, and two pound a pop to get on a bus, and even more for trains, on trams or whatever. It was too expensive for me and I don't have a job, I'm not earning any money so it was like, getting a bit expensive. So I applied to my local council and they gave me a freedom pass which is like little passes what, over 60s get and some other people with health problems. So I'm glad I've got that, so I can get on the buses and trains and stuff for free. Even though I've got my licence back I don't really like driving, it's just that fear of if anything was to happen, and I've got my son in the car it, it just scares me so much. So I don't really drive that often. But that did affect me when I had to give up my licence it was really, I just felt lost without my car. But then I knew that it was important to do that, I had to do that, 'cos it could be dangerous not only for me and my son, everyone else on the road, pedestrians and other road users. Like it made me think and I don't mind getting on the bus especially in the summer like it's not too bad the weather at the moment, I don't mind jumping on buses.

Will has a licence but doesn't need a car in London because it's much easier to take the bus or...

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Will has a licence but doesn't need a car in London because it's much easier to take the bus or...

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Age at interview: 24

Sex: Male

Age at diagnosis: 14

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I was really happy to get my driving licence. Obviously I treat it more as a sort of, it's like I carry around passport just to say that I am this age that I am. I never have problems getting into pubs and bars and stuff like that but it's always been this is who I am. Obviously we're all sort of contemplating getting a car at the moment. Living in London I feel very strongly about the environment even though that I have a passion for cars. We do have one car, it's quite a large car, not a four by four [laughs] I have to say, it's just an over-inflated shopping trolley, for most of the time, we do wander out to beyond London. But because we live so near the centre we can hop on the bus, you know.

For a few people, taking public transport was also difficult because of frequent and unpredictable seizures and they only used public transport with someone else. One man said taking the tube in London made him anxious and worried about having a seizure.

Quite a few people who couldn't drive said they cycled so that they didn't have to walk everywhere. People said they weighed up the risk of having a seizure when cycling, against staying at home all the time or not using any form of transport on their own. A few people had fallen off their bikes and injured themselves because they'd had seizures while cycling and most said they wore a helmet to minimise the risk (see 'Sport and exercise').

Travelling and holidays

Young people also talked about their experiences of travelling and going on holidays. Many were fine to travel and a few said going away on holiday was actually good for seizures because it helped them relax. One man had lived abroad a few times and one woman was just about to move abroad to work.

Martyn has lived in Germany and went to see a neurologist there.

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Age at interview: 22

Sex: Male

Age at diagnosis: 12

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The decision of going abroad was never mine to take, it was part of my degree. Where I study you have to do a year abroad, I'd already been out there 'cos like I mentioned earlier, I went to a language school for a month in Berlin, because my dad had taught a girl who had done a similar thing. And then later that year I went back out to work on this farm, and then, I went back out to work again the following summer, I got sort of an internship in some geological firm. And, you know dated a German girl for the time I was out there. I think how it affected me I learnt in those sort of areas rather, I was really not worried about going to Germany with the university because I'd already experienced it. As it was when I went to Germany this time the medication went haywire, so in that sense it was different. But in making the choice, I didn't feel that it was any different for me going to a university in England or me going to Africa. What it is, you're away from home, made me feel slightly more lonely at time because that wasn't something that had ever really been affected by my epilepsy. The only problems I had, well the times I went out before I was able to take enough medication with me.

What about the experience of going to the neurologist in Germany, what was that like?

Luckily my German was good enough to talk to him about what I wanted to do. When he wanted to put me, because of the brands as well though, it's quite hard and I went to the doctor the other day just to check that the English medicine I'd got, that I'd picked up in England, was the same as the one he'd been giving me. I was fairly sure it was but, the design was slightly different and the brands were different, and I didn't know if I [laughs] was taking the same stuff so I went to check. We managed to get through what was happening and he was fairly' to be honest with you, he was a rarity 'cos most of the doctors will speak fluent English in Germany. Like I remember when I'd had, when I'd been running and I fell over and the ambulance got called, the guy who came to me, one of the guys came to check up on me and you could tell he was desperate to practise his English. Now he was a proper, really high up, he was their neurologist at that University hospital and he came to me to try and persuade me to start switching drugs with him and I turned him down at that point because I was sure things were gonna get sorted. Eventually I ended up seeing a different neurologist but he came to practise his English with me, his English was so good. Generally in a country like Germany you don't have problems to do with not understanding things or. And like it, like I say Germany was really efficient in what they did there.

Some people had special travel insurance which covered their epilepsy. They also made sure they had enough medication with them to last the duration of the holiday, as well as for when they got back home. One woman takes a letter from her GP whenever she travels abroad to show at airport security because she needs to carry both AEDs and insulin for her diabetes in hand luggage.

Ashlea makes sure her travel insurance covers epilepsy, takes her EU health card with her and...

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Age at interview: 21

Sex: Female

Age at diagnosis: 18

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I take my tablets with me, I do always make sure like the first thing I think about is getting my E111 thing that is now a card, but I don't know what it's called now, because if something happened you know. Travel insurance just always make sure the medical, just read through the medical bit make sure it's alright, just in case. 'Cos even if you just have a fit, and they take you into hospital, then that could cost so much money, that you know, it just does make sense to just make sure, so I just check the cover of that is really good. I'm also not wearing it today but normally I wear a bracelet that's, it's from a website I can't remember what it's called now. It's a charity and it's got sort of the medical symbol on the front, and then on the back it says like I've got epilepsy and I'm on medication, also says I'm an organ donor. I normally have that and a card in my purse and that just so if I was in another country and something happened and nobody knew who I was and you know nothing, then at least I'd have that.

Dave travels abroad a lot and makes sure he has his tablets with him. He also has a booklet about...

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Dave travels abroad a lot and makes sure he has his tablets with him. He also has a booklet about...

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Age at interview: 24

Sex: Male

Age at diagnosis: 12

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I have to make sure that I take my tablets with me because otherwise we really do have to, unfortunately have to come home then. I've actually, I was on an epilepsy website and I found that there was a booklet explaining about it in all different languages so I take that out with you know. If I can remember I take that out with me so if I do get a seizure someone can look at the, they can just look at the booklet. I really don't let it affect me, sometimes I might get a partial seizure on the plane like, but it doesn't really affect me.

A few people had experienced problems when travelling, for example long flights triggering seizures or adjusting their medicine-taking when travelling to different time zones. Some also said that they didn't like to fly or travel abroad because they felt their health was too unstable or because they needed to stick to a regular daily routine. One man wanted to travel a lot more with his mates but didn't think it was sensible or fair on them to have to take responsibility if he had a seizure while travelling.

Nick has decided not to go on holiday with his mates.

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Age at interview: 21

Sex: Male

Age at diagnosis: 15

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I haven't actually been abroad on holiday, or very far for that matter on a holiday. That sounds kind of weird as a 21-year-old saying this, but, without my parents because I know I think about them a great deal with this, it seems to be that it affects them emotionally a lot more than it affects me. So whenever I'm thinking about should I go on holiday, should I go out, I mean I could never go to somewhere like Ibiza or something like that. I even had a chance to go with my university friends down to Cornwall, and I though I was like, 'Oh yeah, great, sure I'll do that.' But then they said well you know we'd really worry about you, you know, we're not comfortable with this. I sort of said, it was sort of a mix between an agreement and sort of a, 'Yeah, okay fair enough,' sort of thing. That's a good point I don't want to have to worry you, and what if something did happen down there? They don't really know me as well as some of my other friends.

So it affects holidays. I think is the main thing I would raise there and I've got to think about my epilepsy and who knows about my epilepsy and who would do the right thing by it. I mean a lot of people would just kind of panic and whenever you're out and you have an epileptic a fit, especially in a shop 'cos they're obviously legally liable, they always call an ambulance. You can say, 'I don't need an ambulance", 'I'm sorry, we have to call an ambulance, we're obligated to you know.' I mean, like that kind of happens I suppose, so it does affect that. I mean I know a load of friends who are like, 'Oh let the four of us go off and go to wherever', Magaluf, Portugal, Spain, France whatever, and I just haven't. It's just different I suppose I mean there's plenty of people who do that and they don't have these sort of conditions to deal with, so I don't, I just live a different life. There's nothing wrong with being different. You just adapt to it.

Becky wants to visit her friend in Japan but doesn't feel confident about going on long-haul...

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Age at interview: 23

Sex: Female

Age at diagnosis: 15

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With regard to travelling, I can't, I wouldn't really feel confident doing long journeys on my own. Like with the forthcoming trip of going to Prague that's fine, because it's only a short distance. But as I said before one of my friends is working in Japan and he sort of said, 'Oh you know, you'll have to come out and visit us.' Which would be great but there's no way that I would go on my own. I would kind of be tied to the fact that, obviously there's a lot of my friends that wanna go, which is fine, but I'm kind of tied to the fact that I'm only gonna go if my friends are going cause there's no way that I feel confident going on my own because I know for a fact that long haul flights trigger my epilepsy. So that's a bit of a pain because it would be fabulous to jet off you know on my own, and say right I'll go and see my friend cause I know that none of these people are gonna bother saving the money, and you know I know they'll never do it, they'll all go out and drink it away. But I just wouldn't feel confident doing it, I couldn't. So that affects it but then travelling, long haul flights is not something that you do every year, so it's like once every, I dunno, once every ten years I'd think for me I suppose.

Last reviewed May 2016.

Last updated March 2012