Epilepsy in Young People
Epilepsy - college & university
Here young people talk about their experiences of studying at college or university, the impact epilepsy had on studying and what helped them in their studies.
Studying and coursework
Several young people we spoke with were either studying at university or at college. A few had found getting into university relatively easy but several had struggled to find a suitable course. Some said that, partly because of the problems caused by the epilepsy or the medication (for example concentration and memory problems, general disruption caused by frequent seizures), their A-level results hadn't been good enough for them to get into university and they'd had to modify their plans.
Rachael describes the interview and health check-up she had for a nursing course. She was...
I was like, 'I would really want to go and specialise in epilepsy and, and 'cos I think it would be really great to sort of like pass this information back to people who don't really understand what's going on. It would've helped me I know when I was going through everything.' They were just like yeah, we'll definitely take you on; it's great, all from our end. The day came for my medical, I went for the medical, discussed it with the doctor, and he says, 'cos I'd filled out the form and had everything written up before this episode where I'd had my last fit. Where I hadn't like had a fit in a while and he asked me, he says, 'So is this still the status then? You haven't had a fit in a while?' And I just, you know I was just thinking on the train up there, thinking should I say something, or should I lie, 'cos I know it's gonna affect my chances but I was honest and I said, 'Yeah, actually it's really sad because I had one fit the other week but it was under the weirdest circumstances and it was probably brought on by something quite stressful.' And he was just like, 'I'm really really sorry, but I can't actually say,' he says, 'I'm not gonna say that we're not gonna allow you on the course,' he says, 'It's just very difficult, you have to be pretty well controlled before we let you on the course.' He says, 'What I reckon you should do is go back to your neurologist and say you know like I'm on this dose, but I need to be totally controlled because I still have the occasional seizure.'
Occupational Health check came and she was like, 'Oh it's got to be a year before you were.' I think it had been like eight months or so, from when it was December, it was March that I'd had the last fit and it was in the December I was going, going for my final Occupational Health check, before I was starting the course in January. And they said oh you actually need to be seizure free for a year. Which was like, 'Oh here we go again'. And I said, well it's nearly a year [laughs]. And she was like, do you get a warning beforehand? And things like that. 'Oh yeah I do, quite, every single time. Yeah like funny hand movements.' And she was just like, 'That's a plus. Because at least you can get yourself somewhere safe so if you're working on a ward or something.' I said, 'Oh yeah, yeah definitely, I do that anyway.' She said, 'You know your triggers' and she said, 'You seem like you've become quite an expert at it,' and I was like, 'Yes, I guess I have actually."
For some individuals, talking to the college or university can help to make sure they get the right sort of support for them. This may include looking at what that person's epilepsy is like, how it affects them and their school work, what adjustments can be made to make education easier for them, and might include risk assessments. This can help to ensure that students with disabilities get the same opportunities as other students.
Studying was a challenge for many young people we spoke with and some felt that, compared to other students, they had to work harder to achieve the same results. One woman, who did a degree in health and social work at college, said it was really frustrating to 'put in about 200% and only get about 75% out of it'. Many found the medication side effects - tiredness, difficulty concentrating, problems with short-term memory - the biggest challenge to their studies and something other people didn't always appreciate. One man studying engineering said:
“Concentrating for so long on something, it's something people don't really appreciate if they don't have the illness. But if you've got it, you can understand that such a minor thing can play quite a big role, just going to a lecture and feeling really tired after twenty minutes because you have to focus your energy so much.”
If seizures were poorly controlled epilepsy itself could also be disruptive. People who had epilepsy diagnosed when they first started university, found it hard to come to terms with the diagnosis, emotionally and practically.
Clair's epilepsy was diagnosed in her first year at university. She got a lot of help but,...
So that was difficult but I also had memory problems sort of to begin with but I actually went to the Dean of Students at the Uni because on placement it was brought up, quite a lot on my placements by my supervisors that I had memory problems and that I needed to address them. and the Dean of Students were really supportive and gave me a lot of tactics to sort of address it and I feel now that my memory isn't really that big a problem to me. And that's probably a mixture of the fact that I've had help and also the stress has sort of really been removed as time goes on so. But at the time that was difficult because and it meant I couldn't remember anything and so, it was difficult. But in the second year I kind of picked it up and the second and third years have been a bit easier so, but still, missing that sort of basis makes it a bit more difficult to build upon but I've slowly built it up and my housemates have been really good because they've sort of given me the support and helped me to pick it up and if I've got a problem they'll go over it with me. So yeah that's been, it's been alright.
People we spoke with got a lot of practical help from their university or college to support them in their studies. The disability office at most people's universities had helped a lot, but some people had to look for extra help themselves and felt that help and support should be more readily available. Disabled students' allowance had enabled several people to get free equipment to support their studies. Many got a laptop so they could work flexibly on their own computer from home and a digital recorder to record and listen back to lectures when revising.
Maria describes the different equipment she received and says it made 'a massive difference' to her.
The disability support office put me in touch with the people who can fund the disabled students' allowance from my LEA [Local Education Authority] and, from them I've been given quite a lot of equipment. I've been given a laptop, and a printer and a digital recorder so that I can record my lectures which has been incredibly helpful 'cos it means that if my concentration is lapsing I don't have to worry about it, and then when it comes to revising I can go over it and listen to it, and listen to things that I won't have remembered. The computer is great because if I do get a seizure, and if I'm not well enough to go to university, at least I can be e-mailed things, and things like that really. So yeah, I've been quite fortunate that I've got that equipment from the university.
So they've been a big help for you?
Yeah, absolutely, it really, really has, it's made a massive difference.
Holly explains how the equipment she got with disabled students' allowance helped with her studies.
And they gave me a librarian to work for me, not full time, I didn't do that much work, but she would, you know I would just send her like my shopping list of all the articles, the books that I needed, she would print and copy you know whatever, get a pile of them. So I didn't have to waste time accessing things, I could then maximise the energy that I had to do the proper work because they couldn't pay somebody to do the reading and the thinking for me unfortunately, they couldn't do that so that was the bit that I needed to do. So pretty much getting other people to take care of everything else meant that you know I could really focus on doing some really brilliant research [laughs].
Zoe changed courses because she felt she couldn't 'live up to the demands' of that degree. She...
I express myself not through words which are not so adept as had once been my passion, yes, so I started again, and it took a lot to admit that to myself. That I for whatever reason I couldn't. I couldn't fulfill the path that I had always foreseen, but by a roundabout way I found one that's very well intended for me. So we hope, and it's only now, I must say I mean, with all of the difficulties that I'm sure we will come to, it's only now that I'm coming to regain something of my former self [small laughter] that I have a will to live and succeed again. Not being unconsciously, subconsciously suppressed, by the condition, all of the drama that went with the condition, all that I had inflicted upon my own mind privately, with the issue of having a disability like epilepsy. But I it's only in the past few months that I can look now towards a brighter future, and something that can succeed in a new way.
Sitting exams and being assessed is a major part of studying. For people with epilepsy, exams can be particularly challenging. For some, exam stress can trigger seizures. Revising and writing exams can also be hard because of medication side effects, such as lack of concentration, memory problems and tiredness.
Helen did really well in her university studies but couldn't pass the exams because of her memory...
Helen explains why she does badly in exams. Things got much easier once she got the diagnosis and...
But in the exams yes, the memory affects me. But then also there is the fact that under stress I have more seizures. I mean usually day to day my medication completely covers me and I'm fine, but if I'm really, really stressed out like for example I'm just before an exam or you know if something, if I've got something really, really important and I'm really stressed out, then I'm much more likely to have a seizure or at least a very strong deja vu which is pre-seizure. So before I was medicated I used to have seizures in the exams all the time. It was pretty much guaranteed, it would be half way through the exam I'd be freaking out and I would have a seizure. And of course I didn't tell anyone because I thought I was crazy and what do you tell them. Because it's so much easier now that I can say you know, I have epilepsy, because I know what it is. But before you know what it is you can't describe it.
Holly says exams are a 'rubbish way' of assessing somebody with epilepsy.
Paddy can take rest breaks during exams. He had great support from the university, especially in...
One woman pointed out, though, that extra time for a closed book exam didn't always solve the problems:
“They decided that because, it [doing exams] would take me a lot longer, that maybe three hours wouldn't really work, so I would just have extra time. If you have extra time but you can't stay awake for more than three hours, and you can't concentrate, being given the option for four and a half hours or something isn't actually going to help you.”
Eventually she was allowed to do exams from home, so that she could work on them the whole day and take breaks and rest as needed.
Most people were really happy with the support and help they'd been offered and felt that they were entitled to extra support. A couple of people described themselves as 'stubborn' in insisting that they didn't want any extra help or to be seen differently because of their epilepsy.
At first Holly didn't want to accept any help or be treated differently because of her epilepsy.
But I did it all myself, and I just wouldn't accept any help and I was really stubborn and I think part of it was because I didn't want it always to be, 'Oh well you know [participant's name] is doing well but she's got epilepsy, so that means she's doing really well considering.' I didn't want any kind of special measures taken because I think I wanted to do it despite the epilepsy, and I think I didn't wanna make a fuss.
Although studying could be challenging at times, people felt studying and getting a degree boosted their confidence.
Zoe's confidence has grown. She no longer feels 'limited' and now feels she can grasp the future ...
I just had to rethink my future as far as the way it had been fixed, as in very fixed in my own mind where it was to go. I mean right now I've grown in confidence as enough to be able to think that, now I can grasp the future like anybody else, I feel as though I'm able to live like anybody else, just consciously aware, yes of this epilepsy now, but I don't feel limited anymore. I don't feel bound. I feel as though once again, the traveller that I am, the world is open to me and that is where my art will take me. Yes I'm going to finish on this BA in a year's time, I hope actually to be, I'd love to be accepted into the Prince's School of Drawing, an intensive year here in London studying. After that some time painting for my own, just to define my directive, just where it is that I'm going with my painting. Of course onto a Masters at some point. I need to research into, into what department it would be, I'm not limited by the boundaries of this country, and eventually I wish to, the British School at Rome, a residency there. But yes it's the ladder, I'm sort of on the first step of the ladder but I feel as, for the first time in a long time, I feel as though it can be achieved. We can find it.
We also spoke with a few young people with complex epilepsies and learning difficulties who attended a residential college. All of them felt that the best aspects of college were learning life-skills to become more independent and making new friends.
Simon describes the residential college he goes to. He made new friends there and learnt...
What's that been like? What is it like [at college]?
It's been, I've really enjoyed myself because I've been at other schools and, since I've left school I like this place 'cos it's in the countryside and I like stuff to do with nature and like looking after animals and things. I like doing, working on the farm and doing sort of things outside. I have friends in college as well as outside the college as well. Like I have friends in my tutor group and, which I get on well, really well with, and we have like trips out together, which is like good fun to have together really. It's like you know that, when you have friends that's a good sort of thing to do and we like sort of going out to places and you know just spending time together really. Like when we're in college we spend time together, like break times and just talking to each other and asking each other about what's been going on and just catching up on things.
I've done work prep were I've done visiting stuff around the community like, if I would leave here, I would know where everything is like the doctors, the hairdressers and stuff like that. And I would know where it is and I would go to it and know how to like make appointments there myself. Like go out in the community and find it, just to like work with, work-prep. I've sort of come, I've just completed that, you know that and then I'd do on a Tuesday I have like Life Skills.
Okay what's that then?
It's where we do stuff, stuff on like healthy eating, like eating healthy things, to like sort of projects on like eating like not too much sort of chocolates, like chocolate and stuff and keep an eye on our weight.
Yeah, yeah things that are good for you.
Like making ourselves healthy meals every day.
Difficulties and obstacles
A couple of people had more negative experiences of studying. One woman had to take some time off a child-care course she was doing at college and, when she returned, couldn't catch up with the others. She had to choose whether to retake her year or fail the course. Because she failed, she now can't move on to a degree level and get work in child care. Another woman had been forced to leave a health care course she was doing at university as they considered her 'unfit' to carry out her future work after being diagnosed with epilepsy. She appealed against the decision as discriminatory but lost the appeal (see more about the DDA above and 'Resources' section).
A couple of people had found college too difficult to manage and had had to leave. This was either because of very frequent seizures or severe side effects, but was also made worse by other problems, such as depression for one man, or excessive alcohol use for another.
Becoming a student is a new stage in life, often with many changes, such as moving away from home, living independently, meeting new people and making new friends. Student life is also about socialising and partying (see 'Living arrangements and safety', 'Friends', and 'Alcohol, smoking and recreational drugs').
Starting a new college course or going to university involves meeting lots of new people. People said that it was sometimes hard to know when to tell new people about their epilepsy. Most said they told others only on a 'need-to-know-basis' and to those they were going to spend more time with, such as housemates (see 'Awareness and misconceptions about epilepsy').
Freshers' week was stressful for Anna and she had more absence seizures than usual. She met lots...
Last reviewed May 2016.
Last updated May 2010.