Photograph of two young woman laughing, one facing camera one facing her friend

Help me understand

What makes epilepsy a distinctive experience for each individual?

Epilepsy isn't a one-size-fits-all condition—it can emerge at any stage of life, presenting in various forms.

The common thread is the presence of seizures, yet the array of seizure types and the diverse experiences individuals undergo add a unique dimension to each person's journey with epilepsy.

When someone has epilepsy, their brain can experience sudden bursts of electrical activity, leading to a seizure. The type of seizure depends on where in the brain this burst happens. During some seizures, a person may feel strange sensations or movements, but they remain aware of what's happening around them. Other seizures can cause stiffness, loss of consciousness, falling, and jerking movements. Seizures are unique to each person, but they all involve electrical disruptions in the brain. Click here to find out more about epilepsy.

How can I better understand?

If you know a young person who has epilepsy, you might be unsure of how to talk to them about it. Not all epilepsies are the same, so it can affect people differently. But don't worry, understanding their condition starts with a simple conversation. Here's how you can approach it:

  1. Start by asking if they're comfortable discussing their epilepsy with you. Let them know you're interested in learning and supporting them.
  2. Explain that you don't know much about epilepsy and would like to understand how you can help keep them safe.
  3. If they're open to talking, here are some questions you can ask to gain a better understanding:

  • Could you tell me more about the type of epilepsy you have and how it affects your daily life?

  • What typically happens during a seizure, and what should I do if you have one when I'm around?

  • Is there anything specific you want me to know or do when you're feeling unwell?

  • Would you like me to have the contact details of your parents or anyone, just in case?

Remember, showing empathy and being willing to learn will go a long way in supporting your friend with epilepsy.

What happens during a seizure?

When someone has epilepsy, their brain can experience sudden bursts of electrical activity, leading to a seizure. The type of seizure depends on where in the brain this burst happens. During some seizures, a person may feel strange sensations or movements, but they remain aware of what's happening around them. Other seizures can cause stiffness, loss of consciousness, falling, and jerking movements. Seizures are unique to each person, but they all involve electrical disruptions in the brain.

What happens after a seizure?

What happens after a seizure also varies from person-to-person.  Some people may need a moment to compose themselves and then they can pick-up where they left off, studying, working, or playing a sport. Other seizures may mean the brain and body needs more time to recover and they may need to sleep for a few hours or even a few days.

Seizure triggers and anti-seizure medication

Seizure triggers and anti-seizure medication side effects also play an important role in defining an individual’s support needs.  Seizure triggers vary widely, from lack of sleep and stress, to missing meals, being unwell and more.  Some medications can cause drowsiness and/or dizziness, they can affect memory, learning and attention. 

There are many more factors that make someone’s epilepsy unique to them:

  • A young person with epilepsy is four times more likely to struggle with their mental health
  • Their communication or cognition could be affected by epilepsy
  • For some young people it can impact learning
  • There are cooccurring conditions that sometimes accompany epilepsy
  • Age and gender can also play a role, for example some young women experience a greater number of seizures at certain times in their menstrual cycle.

Plus, who they are as an individual, their personality, culture, beliefs, aspirations, and passions also need to be considered. 

Quite simply, there is no single way to support a child or young person with epilepsy.  But there are ways to understand what they need to be safe and included.Click here to learn more about epilepsy.

friends linking arms

Are you a young person living with epilepsy?

We’re here for you.

Find out how to get support