Epilepsy in Young People

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.

The Disability Discrimination Act (DDA) protects people with disabilities, including epilepsy, from being treated unfairly. The DDA applies to many areas of life, and this includes places of education (school, college and university). For people with epilepsy this means that their school, college or university can't refuse to take them 'just because they have epilepsy'.

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.

Things that helped
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. A couple of people had been assigned note-takers, who could take notes when they felt too tired at lectures or too ill to attend. One woman with photosensitive epilepsy received all the lecture slides printed out, so she didn't have to follow PowerPoint-presentations on screen which could trigger her seizures. Another woman was allowed to copy books for free at the library and was also given a book allowance so she could buy her own course books. Because medication made her tired during the day but often awake at night, these arrangements allowed her the flexibility to work at home and at a time that suited her, so that she had a fair chance to do her best. During particularly difficult times with seizures or medication changeovers, some people found it helpful to change courses, take time out from their studies, go part-time or cut down the number of modules they were doing. One man missed parts of his first year at college because of severe seizures and retook the year to catch up on the time he had missed.

Sitting exams
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.

Almost all the people we spoke with got extra time to do exams and were often allowed to do exams in a separate room, without the pressure of other students around. These arrangements helped to make exams a little less stressful. One woman who had photosensitive epilepsy did her exams in a separate room with the main lights switched off. Because tiredness and concentration difficulties were also a problem for some, they were allowed to take rest breaks during exams. Many people we spoke with had dyslexia and some of them got extra time for exams because of the dyslexia rather than the epilepsy.

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.

Although studying could be challenging at times, people felt studying and getting a degree boosted their confidence. 

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.

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.

Student life
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').

Many felt that people were more mature and supportive at university than they had been in school, and found social life easier than when they were younger. Those whose epilepsy was diagnosed at the start of university said they had struggled to make friends and a couple had lost some of their friends after being diagnosed (see 'Friends').

Last reviewed May 2016.

Last updated May 2010.