Epilepsy

Epilepsy - school, studying and bullying

Many of the young people we spoke with had been diagnosed with epilepsy before they went to school or while still at school. Here, they talk about how having epilepsy affected their schooling. Experiences ranged from very positive to those who felt that their seizures had had a major negative effect on their studies and schooling. It was especially difficult for those who had been bullied at school.

Positive experiences at school

Going to school had been a positive experience for many and they had felt well supported by their schools and teachers. 

A few people explained how the school had been flexible in accommodating their needs. For example, a couple of people said that they were allowed to take some time off school if feeling unwell after a seizure. A few also had special arrangements for taking exams, including having more time to do the exam or getting an extension for handing in school work. One young woman had struggled in her first school but, after she changed schools, felt much more accepted and supported.

Many people warmly recalled one special person from school who had been particularly understanding and helpful, be it the school nurse, secretary or the head teacher.

Challenges at school

For many people, however, school had been a difficult time because of seizures, the side effects of the medication or because of the way other people had treated them.

Several felt that there had been a considerable lack of awareness of epilepsy in school and that this had affected their schooling. Some, who had absence seizures, said that teachers knew very little about any other seizure types than tonic-clonic seizures and often didn't realise that these young people were in fact having absence seizures in class. 

Another woman, who also had attention deficit hyperactivity disorder (ADHD), said her teachers complained that she was just 'acting up' in class. 

Having frequent seizures of any type in school was very disruptive and affected people's school work. One woman's school years were hard as she was 'forever fitting' at that time of her life.

The side effects of epilepsy medication caused a lot of problems for many and affected their school work. Problems with memory and constant tiredness made it difficult to follow lessons and do exams. One young man said: 

“The main problem I had with school in terms of my epilepsy was that the medication made me so tired that I did fall asleep through the class sometimes… that wasn't too good, sleeping through the class”.

Many people's seizures were triggered by stress, which made exam times especially hard. A few had actually had a seizure during important exams, like their GCSEs or A-levels. A lot of people also had memory problems as a side effect from medication, which made both revising for, and taking exams, very challenging. Some who had absence seizures noticed when revising that they had missed out bits of lessons because of their seizures and hadn't been aware of this at the time. A few people's marks had gradually gone down after they were diagnosed with epilepsy.

Some people felt that they hadn't fulfilled their full potential and hadn't been able to achieve the goals they had set for themselves when they were younger.

Some people felt they couldn't achieve their best and found this extremely frustrating. They often had to make new plans to do a different college course or other type of work (see 'College & university' and 'Work and (un)employment'). A couple of people found that, in time, their new plans suited them really well. They gradually started feeling better about what they had achieved under very difficult circumstances.

A major aspect which had made school very difficult for many was the attitudes and reactions of other people, usually other pupils. Some said they felt different from others.

Bullying

Being teased and bullied in school was something many young people we spoke with had experienced. They talked about being 'called names', 'having the mickey taken out of' them or their seizures being imitated, which was very hurtful. One woman said she didn't really have any friends in school and felt miserable because she was being teased so much. She said she often had to sit 'as a loner' during the lunch breaks.

People talked about the impact bullying had on them, including knocking their confidence and feeling upset and withdrawn. One man who suffered from bad acne caused by his epilepsy medication was called names and teased about his seizures. He said, “It affected my self-confidence so I was just like really shy, so that affected me a lot”. 

A couple of people said they got so angry after being teased that they would lash out at the bullies and end up being blamed for being aggressive.

Having a seizure in school was a particularly difficult experience because other pupils would make jokes or tease them even more afterwards. One man with absence epilepsy said he kept his epilepsy a secret for years because he didn't want to be known as 'the boy with epilepsy' in school.

Many people felt that their teachers hadn't handled the bullying and other people's negative reactions very well and, in some cases, hadn't responded at all. Young people had found help by talking to their parents about bullying and deciding to make changes in their lives.

A couple of people said they had received great support and help from epilepsy organisations who offered both practical help and counselling. 

Despite many negative experiences, some people said their class mates and other pupils at school had been very understanding and, more than anything, worried for them. Many also said that they had a circle of close friends whom they could trust.

Cyberbullying
“Cyber bullying is when a person, or a group of people, uses the internet, mobile phones or other digital technologies to threaten, tease or abuse someone.” - Childline
Cyber bullying can happen 24 hours a day, seven days a week if you use the internet or a mobile phone and can leave you feeling scared and unsafe even when you are at home.

For links to more information and support on bullying and cyberbullying, see our Mental health and wellbeing resources.
 

Last reviewed May 2016.
Last updated March 2012.

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