It's ok to feel nervous about telling other people about your epilepsy. You might be worried that they'll start treating you differently or that they won't handle it well. But chances are they will surprise you and, you never know – you might discover that they have epilepsy too!
Remember, you don't have to tell everyone as soon as you're diagnosed. You might want to wait a few weeks or months until you've had time to think about what epilepsy means to you and learn more about it.
Why it's important to tell
You might want to hide your epilepsy, but that can be dangerous. If you have a seizure, you want to make sure others are prepared and they know what to do. If you need to ask for rides, or need someone to join you when you're swimming or biking, you might find it's easier to ask when people know the reason.
For some people, talking about epilepsy feels as natural as brushing their teeth in the morning. For most people, it's a little harder. Keep reading for tips on how to bring up epilepsy and how to answer some of the questions you might receive.
Epilepsy Conversation Starters
Where you discuss epilepsy and how you bring it up can sometimes affect people's response almost as much as what you say. Are there bad times to bring up epilepsy for the first time? It's probably best to avoid the suspenseful moment in a horror movie or during the big game. Instead, it's best to pick a time and place when you're comfortable and where you won't be interrupted. You might want to try discussing epilepsy during a walk or while having a snack.
Try to stay very matter-of-fact and positive. Epilepsy is only part of who you are and isn't anything to be ashamed of. If you act like your epilepsy isn't a big deal, your friends will just take it in stride.
Here are some opening lines you might find helpful:
"You know how I'm always wearing this necklace? It's a Medical Alert necklace because I have epilepsy."
"Remember that movie we watched in health? I have seizures too, but mine are a little different."
"Did I ever tell you why I take medicine every day? I have epilepsy and I take medicine so I don't have seizures."
"Remember yesterday, when I was acting strange? That was actually a seizure."
"You know, sometimes I might act a little weird. I have epilepsy and every once in a while, I have seizures. They can seem scary, but they don't hurt me and they're not contagious."
When you talk to younger siblings or cousins, you need to think carefully about how much information to give them. You don't want to scare them, but at the same time, they need to be prepared in case you have a seizure.
Teach them to call out for help, or train them in the basics of seizure first aid. Make sure they know not to grab you during a seizure or to put anything in your mouth. You might find it helpful to explain your epilepsy by comparing it to something else the child has experienced, like an allergy attack from eating peanut butter.
When you need to say something
If you're spending a lot of time with someone – like a girlfriend, boyfriend or best friend – you probably want to mention your epilepsy. If you have a seizure, you'll want to make sure they know what is going on and what to do.
If your seizures are frequent, you might want to tell other people also, even if you're not very close. For instance, if you regularly have seizures in school, it might be a good idea to tell your teacher and the students in your class so they know what's going on.
If you're about to take a trip or if your friends suggest an activity that could cause a seizure (like going to a video arcade when you have photosensitive epilepsy), you probably want to mention your epilepsy.
If your friends make fun of someone who has a seizure, should you say something then? That's up to you. If you don't want to mention your epilepsy at that moment, you can still explain what epilepsy is and why seizures aren't funny. A few days later, you might want to mention that you have epilepsy.
Your type of epilepsy and first aid
When you tell people you have epilepsy, talk about the type of seizures you have and what they should do. For descriptions of types of seizures, click here
People may want to know if your seizures hurt or what they feel like or if there's anything they can do to stop your seizures. They may also worry that epilepsy is contagious or that they might be doing something to cause your seizures.
Try to reassure people that the seizures aren't contagious or caused by anyone or thing in particular (if you have photosensitive epilepsy, you might want to mention flashing lights). You may find it helpful to print some information from our website or have some Epilepsy Foundation brochures or handouts to give the person.
When you tell people you have epilepsy, you may face a lot of questions. Depending on culture and age, some people you tell might have very different perceptions about epilepsy. In other instances, you might learn that the person already knows about epilepsy or that it takes a few days for the person to process what you've told them and to begin asking questions. Try to be patient – you've had a lot longer than they have to learn about epilepsy!
Talking to your boyfriend or girlfriend
You may be worried that you'll have a seizure while you're on a date with someone you really like. Or, you may worry about how to tell someone that you have epilepsy and you may be concerned about how they'll respond to the news.
It's ok to be worried. Everyone -- even people without epilepsy -- worry that their dates won't like them anymore after they learn their secrets or if they have bad breath while kissing.
It's important to remember that you deserve to be treated well and that you will find someone who appreciates you for who you are – epilepsy and all.
When to bring up epilepsy
Generally, people say you should keep your first date lighthearted and fun and shouldn't talk about ex-boyfriends or ex-girlfriends or mention epilepsy or that you have a crush on your date's best friend.
Everyone is different though. If you're really involved with your local epilepsy organization or if you're worried that you may have a seizure on your date, it's ok to bring up your epilepsy. If someone suggests a date activity that you think could cause a seizure, you should probably let them know why that's not such a great idea and suggest an alternative location or activity.
If your seizures are under control, you can feel free to only mention your epilepsy after you're officially going out or when you feel comfortable enough to talk about your epilepsy.
Talking with your Parents
Chances are, your parents were with you when you were diagnosed with epilepsy. They may have even witnessed one of your first seizures – you know, the one where you ended up in the offices of multiple doctors afterwards. That type of experience can be scary for parents and can make it harder for them to give you the space and independence you need.
But being a teenager is all about teaching your parents to let go. If your parents are worried about giving you the independence you crave, rest assured that this is a normal part of life. Almost every teenager struggles with being treated like an adult whether they have epilepsy or not.
The good news?
Parents eventually get around to treating you like an adult. Sometimes it happens during your last year of high school or when you're able to drive or ask friends for rides. Other times, your independence won't really sink in until you leave for college or soon after.
If you're looking to speed up the process, you can try the following strategies:
- Talk to them! You're trying to get your parents to trust you as an adult, so that means using adult strategies to get what you want – aka, talking it out. Tell your parents that you want more independence and ask what you can do to earn it. They might use it as a way to negotiate a permanently clean bedroom, or they might surprise you. If they do push for a clean room, well, then it's time to start cleaning.
- Show them that you can do it. Whether it's getting a part-time job or doing all of your homework or chores before being reminded, show your parents that you can keep track of your own schedule and stay ahead of your work – two key aspects of being independent.
- Ask your doctor to talk to your parents. If you think your parents are too worried about your epilepsy, or are using it as a reason to say no to things, ask your doctor to talk to them. They might need to hear from someone else that it's safe and important to give you some freedom.
- Try to be patient. You're probably doing ok now, but think of how stressed your parents were before the doctors diagnosed your epilepsy. They will eventually come around!