Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Sharing the News

Fri, 03/06/2020 - 12:50
So, this is something I'm actually pretty worried about. I discovered I had epilepsy in sixth grade so, by the time I graduated High School, I hadn't had to explicitly tell anyone that I had epilepsy. It was just a common fact people knew either by having a class where I'd had a seizure or being told by a close friend. So, as I go to college and enter into new relationships (whether platonic or romantic), I was wondering how it would be best to tell people? I think just slipping it into casual conversation on day 1 would be a bad idea: "Hi, I'm _________. I'm from ___________. I'm majoring in Creative Writing. I have three siblings, epilepsy, and a cat named Dinah." I feel like that would give some people pause, especially in romantic relationships. Any suggestions on how to break the news?


Hi,Thank you for posting. It

Submitted by Anonymous on Mon, 2020-03-09 - 08:47
Hi,Thank you for posting. It’s important to remember that you are not alone, and we are here to help support you. We understand that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health.  .It’s great that you’re planning for school in advance.This may help to lessen your risks, improve safety &increase the chance of a successful college experience, both in and out of the classroom. For strategies, tips and resources for transitioning to college, visit: also understand it can be intimidating and a very personal decision to share about your epilepsy, however it can also be very beneficial for a number of reasons. .How much information you share is up to you and you may want to start by just telling someone that you have epilepsy, describe your seizures and let them know the best first aid strategy. Additionally, talk with your friends about when it is necessary to call for emergency help & how to administer seizure first aid, here: . Review and update, (if necessary) your seizure action/response plans with your healthcare team and make sure it’s easily accessible. Seizure action/response plans are very helpful tools used to help those who are closest to you understand how to respond appropriately if you were to have a seizure and what constitutes as a seizure emergency for you. To learn more about seizure action or response plans, please visit: .You may want to consider having a medical ID, or bracelet, in case you were to have a seizure and were unable able to communicate that you have epilepsy. There are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet, with your doctor to see if an alert device is an option for you:  .For additional information and resources regarding managing your epilepsy, please visit:, you may always to contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and-access to national and local resources. 1-800-332-1000, or  .Or contact your local Epilepsy Foundation: , find support groups, events, and programs in your community. 

I usually don't tell them on

Submitted by Misjoey101 on Mon, 2020-06-22 - 22:15
I usually don't tell them on day or date 1. They can get to know me a little before I slip it in. Even with my roommates, I stay a couple days and then drop the E bomb. And do it as casually as possible. Straight out saying " My name is ____ and I have epilepsy." makes it very memorable. Bringing it up in a conversation like: Roommate 1: "When I was drunk, I asked my best friend out of a date." Me: "One time, when I woke up from a seizure, I asked the paramedic where my bra was." Roommate 1: "Why did you have a seizure?" Me: "I have epilepsy." Roommate 1: "Oh. You seem fine to me." 

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.