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Effects on the Individual

Epilepsy and young people

Being ‘different from 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 and ongoing seizures have strong fears of having a seizure at school. Students with epilepsy are often afraid of being bullied, teased, and excluded from activities by their peers. They may also be afraid that teachers and parents will limit their participation in the full curriculum due to over-protectiveness. Without adequate support, a student with epilepsy may adopt 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 being chronically sleep deprived from staying up too late.

Epilepsy is the most common neurological condition in 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. However, most young people diagnosed with epilepsy ultimately achieve excellent seizure control and are able to participate with their peers in most activities and experiences. Managing daily medication and avoiding seizure triggers, such as lack of sleep, are an important part of living well with the condition. Convincing young people of the need to continue daily medication and avoid seizure triggers when they have had excellent seizure control for an extended period of time can be difficult. The impact of epilepsy can be experienced in many ways:

1. Disruption to Learning Opportunities:

  • Ongoing seizures and unrecognised seizures may interfere with learning
  • Fear and anxiety about having seizures in public can disrupt the students ability to attend in class
  • Medication side-effects can be detrimental to optimum learning. Common side-effects include – fatigue, dizziness, irritability (& aggression less frequently), double vision, nausea and tremors.
  • Students may miss learning opportunities during seizures and the recovery phase Students experiencing nocturnal seizures may be tired and drowsy during the day at school
  • Missed school due to: seizures, medical appointments and tests, medication side effects, avoiding situations or activities where the student might need to explain why they couldn’t participate, parental overprotection.

2. Social Implications:

Coping with a disorder characterised by unpredictable and irregular seizure activity can create situations that lead to:

  • Embarrassment
  • Rejection
  • Isolation
  • Guilt
  • Diminishing Self-esteem
  • Reluctance to join in and unwillingness to take risks due to fear of having a seizure
  • Risk-taking behaviour to remain part of a group.

Effects on those close to the child / young person

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.

Siblings of a child with epilepsy can feel anxious and fearful for their brother or sister. They may take on a caring role and feel a responsibility to protect their sibling, especially in the school environment. They may also feel that they aren’t getting the same amount of parental attention as their sibling with epilepsy, which can lead to resentment and disruptive attention seeking behaviours.

Because epilepsy can be a confronting disorder, carers themselves may experience isolation. The Epilepsy Foundation of Victoria provides a range of services to assist parents & carers make a healthy and positive adjustment to having a child with epilepsy.

“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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