Dear Hope: How do I disclose that I have epilepsy to my friends?

DEAR HOPE: I am a freshman in high school, and I just started at a brand new school. Despite this year’s circumstances, I have been enjoying my academics and making new friends. Some of the people that I have met in my classes, have become some of my best friends. We do group projects together, sit with each other at lunch, and we just started hanging out with each other outside of school. We have naturally become quite close. They have witnessed me cry and laugh uncontrollably, and I have never felt so comfortable around a group of people. I know that I can trust them with anything, and they will be here for me.

Since we met, I have kept a secret hidden from them. I’m so afraid that when I tell them my secret, they will get too freaked out to spend time with me anymore.

See, I have epilepsy. I got diagnosed when I was 5. When I was younger I had seizures quite often, but it seems to be more under control now. I had just celebrated my one year of being seizure free a couple of days prior to my first day of high school. That being said, I wasn’t really prepared to tell anyone that I had epilepsy. Once I made this group of friends, I thought it was okay to have one thing that they didn’t need to know about me.

And then it happened, something that I was hoping would happen to me again. I was sitting in science class, and I was quite tired from not getting enough sleep the night before. I had a tonic-clonic seizure right in front of my whole class, specifically the group of friends that I had just made and got so close to. What do I do now? How do I tell my friends that I have epilepsy? -Freshman with New Friends

DEAR FRESHMAN WITH NEW FRIENDS: I am glad that high school is going well for you so far, and that you are doing well in your academics and making new friends! It’s completely normal to feel anxious about telling your new friends that you have epilepsy. From what I understand, you are concerned that they’re going to treat you differently or they’re not going to take things well. Yet odds are, you’ll be surprised by them. And you never know- maybe one of their family members or other friends have epilepsy too.

Remember, don’t feel pressured to tell your friends right when you meet them. It is ok to give it time, and make sure that they are trustworthy and seem like real friends who will be here for you. But, from what you have told me about your new group of friends, they seem like great people! If they have stuck with you since school started and you feel comfortable around them, I feel confident that they will support you in any way when you disclose that you have epilepsy to them.

You might feel like it’s better to keep your epilepsy a secret, but that can be dangerous. That way, when you do have a seizure, others can be prepared and they are educated about what to do. You can find it easier to ask people who know you well, whether you need to ask for rides, or need someone to join you when you’re swimming or biking.

For some people talking about epilepsy can be very natural, but for most people it can be much more difficult. Sometimes when you talk about epilepsy and how you bring it up, people’s reactions can affect just as much as what you tell. It may not be the best time to casually bring up your epilepsy in the middle of class, or when you and your friends are in the middle of watching a movie. Instead, when you're relaxed and where you won’t be disturbed, that is the best place to talk about your epilepsy. I would suggest going on a walk or getting a snack and sitting down would be the best time to inform your friends about epilepsy.

Try to stay positive when you are talking to your friends. Remember, epilepsy is simply an aspect of who you are. If you feel like you aren’t ready, and you don’t know how to tell them, I recommend going to a SHARE group organized by Epilepsy Foundation New England. During these groups, you can meet people your age, and get advice from them about how they disclosed their epilepsy to friends and families. Or if some people in the group are anxious about disclosing epilepsy too, you can relate to them, and figure out together how to talk about epilepsy and how to inform your friends and family. If you are interested, here is the link to information about the SHARE groups: https://epilepsynewengland.org/events.

I hope I was able to help you. Just remember that if they are true friends, they will stand by you and will not treat you differently when you tell them about your epilepsy. - Hope

If you are anyone you know would like to ask Hope a question, please submit them to Steve at @email. You might even get featured in our Dear Hope Column. As always you will remain anonymous.