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.
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...
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...
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...
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.
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 resources' 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...
Will has a licence but doesn't need a car in London because it's much easier to take the bus or...
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.
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...
Dave travels abroad a lot and makes sure he has his tablets with him. He also has a booklet about...
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.
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...
Last reviewed May 2016.
Last updated March 2012