Talking to your children about epilepsy

As a parent, it’s natural to feel protective of your children. It’s natural to feel nervous about approaching certain topics or unsure of how to explain them. Even so, there will always be new and important things they need to know. Children are curious by nature, and helping them understand difficult topics is often more helpful than trying to protect them from such information. Though the situation may be scary, you can help them enormously by answering questions and enabling them to understand the bigger picture. 

Talking about epilepsy with kids

Epilepsy is more common than one might assume. It’s not unlikely that a child will come to know someone with epilepsy at some point. This is bound to raise some feelings and questions, particularly if they’re confronted with an epileptic event, or come to develop epilepsy themselves. The important thing to remember is that your children are looking to you for context about how to react. The way you respond can be a great example for them, helping them learn to handle the issue calmly, accurately, and empathetically. 

Teenager son and senior father sitting on stairs and talking.

Here’s what some parents find helpful:

  • Remember to be honest. Lying to make them feel better or hiding the whole truth may have consequences later on. It may confuse them or make them less trustful of you in the future.
  • Speak at their level. Be sure to address them at their true language level. Try not to make things overcomplicated or overly simple. You understand your children best, so be sure to give them all the information they need in the same way you would explain almost everything else. Cheeky Neurons is a great place to start for easy to understand educational videos about the brain and seizures
  • Be aware of context. Bear in mind the relationship between your child and the person with epilepsy. Is it a close friend or family member? Someone from school? Or do they have epilepsy themselves? Don’t be afraid to reassure your child if they’re concerned. Though epilepsy may seem frightening, you can genuinely assure them that epileptic events are not as alarming as they appear. You can explain that people with epilepsy are rarely hurt by their events, and that many people with epilepsy live almost the same as everyone else.
  • Explaining seizures. Your child is likely to be concerned about the seizures themselves, which can certainly feel like a lot to explain. To begin with, you can definitely let them know that not all seizures are the same, and they are rarely as alarming as they may appear in the media. In many cases, seizures are barely noticeable to others and are not at all painful. For many children with epilepsy, there is a good chance their seizures can be controlled completely with medication.
  • Answering Questions. Finally, remember to expect and encourage questions. Children are curious by nature and will almost always have some questions. They may not ask them then and there, and you may not be able to answer every question immediately, but you should make it clear that questions are always welcome. Be prepared to answer questions sometime down the line if they’re not ready to ask right away. If you do not know the answer to a question, it’s perfectly ok to tell them so and explain that you’ll find them the answer when you can. Just be sure to follow through and provide an answer. 

Waist up portrait of little kid looking at mom with joy. She is walking with mother and father holding hands and feeling delighted

“What if my child has epilepsy?”

Knowing that your child has epilepsy can bring a range of emotions for any parent. It’s natural to feel scared yourself, or to wonder why it had to happen to your child. One thing you can do is to remember that epilepsy is treatable in many cases, and though it may still be difficult, you can use your words to help your child feel better. 

Above all, make sure they know that they’re safe, that there are many children like them who have epilepsy, and be sure to let them know what their condition means and how to handle a seizure should they have one. 

It’s also worth keeping in mind how others, such as other children or family members, may react to the news. This may be a great cause of concern for your child, particularly if they’re worried about bullying or not being accepted. One way to address this is to explain that you’ve spoken with their teachers, who may be able to provide assistance should the need arise. You may also want to help them to practice explaining epilepsy to others, so that they feel more confident in explaining themselves to friends at school. 

Make sure they understand that epilepsy is common, that it doesn’t make them any different from other people, and that they deserve to be treated with the same respect as any other child they know. 

“What if I have questions?”

It’s okay not to have all the answers. There are plenty of resources out there to help you understand epilepsy and how to talk about it. If you’re unsure of where to start, reaching out to your local epilepsy support organisation is a great start. Epilepsy may seem complicated or scary at first glance, but the more you know, the easier it becomes to recognise it for what it is. 

With knowledge and communication, we can make epilepsy less complicated and less scary for those with epilepsy and their loved ones — adults and children alike.