Children looking at a tablet together

How will epilepsy affect me?

How will my epilepsy make me feel?

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Every person who has epilepsy feels different.

  • You may feel scared, worried, or embarrassed about having a seizure in front of others.
  • It is normal to sometimes feel sad and frustrated about having seizures.
  • You might feel extra sleepy or tired because of seizures. Sometimes medicine you take to stop seizures can make you feel tired, too.
  • It may be tough to remember things or pay attention at school or at home.
  • Seizures may mean you might not be able to do all the things you usually do, or that you have to change the way you do some things.
  • Sometimes you may need some extra help from an adult - this can be hard to get used to. It is always important to talk to your parents about how you are feeling. They can help!

Sometimes it feels like I can’t control my emotions…

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Epilepsy can make you feel restless, angry, confused, or sad. Having a change in how you feel is very common and might be caused by your medicine or your seizures.

Sometimes you may feel out of control, and that’s okay.

Just be sure to tell your parents about your mood, how you are feeling, and what you are thinking. Tell them what helps you feel better so they can help!

What can I do to feel better about my epilepsy?

  • Talk with your parents and your doctor, they can help!
  • Read stories about other kids with epilepsy.
  • You are not alone! Meeting other kids with epilepsy may help you to feel less scared, frustrated, or embarrassed. 
  • Taking your medicines, getting good sleep, and eating healthy foods are all things you can do to help you feel well and to help keep seizures from happening.
  • Your epilepsy should not keep you from having fun – finding activities that you can do, like games, crafts, and outdoor activities will help you to feel better!

My brother or sister has epilepsy. What does that mean for me?

How You Might Feel

  • Worried
    • that you may have caused your sibling’s illness.
    • that your sister/brother may die.
  • Jealous about all the attention your sibling has been getting
  • Angry if you are asked to do chores that your sibling can’t do.
  • Embarrassed that your sibling may have a seizure in public and angry when strangers stare at your brother or sister if they have a seizure.
  • Scared that you may have a seizure someday, too.
  • Guilty when you feel badly about your sibling with epilepsy.
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How can you help your sibling with epilepsy?

  • Learn more about epilepsy and seizure first aid.
  • Read books with your sibling about epilepsy.
  • Help your sibling with epilepsy feel like their usual self by continuing to play with them and finding activities you can do together.
  • Listen to them if they tell you how they are feeling about their epilepsy and offer kind words or a hug (if they like hugs!)

Epilepsy and Friends

How do I talk to my friends about my epilepsy?

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  • Explain to your friends that sometimes you have seizures, and that seizures are a medical condition. Other kids may have allergies, asthma, or diabetes; but you have epilepsy. Seizures are a symptom of epilepsy.
  • Tell them most seizures only last a few minutes and stop on their own.
  • Tell them epilepsy is not something a person can “catch.”
  • If you are comfortable sharing, and would like your friend to know, you could explain what your seizures look like, so they know when you are having one and can get help.
  • Tell your friends that your epilepsy does not stop you from having fun! You can still play with your friends – talk with your friends about activities you can do together.
  • If your friends want to learn more, read a book about epilepsy with them.

What if I get bullied or laughed at?

Not all kids know about or understand seizures. Sometimes when kids are unsure about something, they feel uncomfortable and make poor choices like bullying. Bullying is not okay. 

  • Always tell a grown up if bullying happens. They can help!
  • Helping others understand seizures will help them learn it is not okay to laugh at or bully someone who has seizures.

Hear what Milo Ventimiglia has to say about Bullying and Epilepsy.

 

Authored By: 
Chris Ryan MSW, LICSW
Meghann Soby MSW, LCSW
Authored Date: 
11/2019
Reviewed By: 
Elaine Kiriakopoulos MD, MSc
Elaine Wirrell MD
Teresa Cook RN
on: 
Friday, November 1, 2019