Epilepsy

The Condition's Effects on the Child / Young Person

Effects on the individual

Epilepsy and young people

Being ‘different to the other kids’ is something all students, whether well or ill, prefer to avoid. In adolescence, the need to fit in and be part of a group may assume even greater importance, than in childhood. Students who have epilepsy, whether they are absence seizures or seizures that involve convulsions, have strong fears of having a seizure at school. Fears particularly relate to the responses from peers and the school staff, which can vary from bullying and ridicule, fear of them personally through to over-protectiveness. Without adequate support, a student with epilepsy may adopt self-protective strategies that ultimately have an adverse impact on their health, education and social life. Such strategies may include staying away from school, avoiding social occasions, avoiding friendships, not taking medication, drinking alcohol and having late nights.

Epilepsy is the most common neurological condition of adolescence. The need to adopt some strategies to ensure one’s own safety and the safety of others, may at times seem burdensome to young people. Epifile (Epilepsy Australia) offers good advice that speaks directly to a young person, suggesting that gaining good control of seizures assists the person to participate in the full range of social activities and to look forward to independence, as do their peers.

Effects on those close to the child / young person

Epifile (Epilepsy Australia) says that the experience of caring for someone with epilepsy, including children is not easy, especially if the seizures are not controlled. Carers of someone newly diagnosed with epilepsy may be frightened of the seizures. Sometimes carers become upset when they observe unusual reactions and behaviours. It is necessary to distinguish whether these are side-effects of medication or whether they are part of an emotional reaction. If a young person feels isolated and angry or is being bullied at school it is important that the carer is able to step in and offer some help. Talking about the issues to the person with epilepsy may help but sometimes it is necessary to adopt an advocacy role and enlist the help of the school, or professional counsellors.

Because epilepsy is a confronting illness, carers themselves may experience isolation. It is important they seek help and understanding in order to maintain their own health.

"In their shoes" -
stories from children / young people with the condition

“When I was doing my VCE I asked for special consideration for my exams. My teacher said that I didn’t need it, I should just study hard and I would be OK. I got tired and anxious and I had a seizure during the first exam. I didn’t sit any more (exams) and didn’t complete my VCE that year. Later I had neurosurgery and I no longer have seizures but it was a long time before I got to uni.”

Young woman aged 22, (personal communication in 2000).

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