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.
Help End the Stigma!
Tue, 10/25/2016 - 10:42Hi everyone, I've been writing a lot about helping end the stigma by stopping hiding your epilepsy (if you do), confidently mentioning it to others at the right time and during the right circumstances. Jumping onto EF's forum, I'd like to get a sense of how many others are interested in stepping forward and/or otherwise helping end the stigma. I don't have a group right now, but I've gotten a sense of great interest on other forums. If you're already contemplating "coming out," I have a post called "5 Steps to Talking to Others about Your Epilepsy" on my blog http://www.shedlightonepilepsy.blogspot.com. It may or may not be useful. The important point of this post, though, is to determine the interest in the fight to end the stigma. Please let me know! Many thanks, Alison Zetterquist
the stigma has been around
Submitted by just_joe on Tue, 2016-10-25 - 13:21
the stigma has been around for over a thousand years. When I was diagnosed there were no forums, computers and very few organizations like the EFA. Yes they have come a long way. If the people with epilepsy do not let their friends know they are hurting themselves. Because they know not when they will have a seizure. That friend would be startled and would wonder why they weren't told about it. In other words they could have helped. They would have known in case the EMT's arrived so that trip to the hospital may not have been needed. They have an opportunity the teach others what to do and yes that alone can help. My brother remembered a few things so when a co worker said his daughter was diagnosed he was able to give him some information. He also called me to ask about the meds she was put on. I was diagnosed when I was 13-14 and the neurologists working on me never answered my question. Which was "What is Epilepsy" So I researched o find out that it was and the kinds of seizures I could have. The only way I could do that was because in English we were to write an essay on anything we wanted. I wrote the essay. It ended up being read to ll of her classes. My science teachers classes and when Mr. Ramey found out and listened to it he wanted it read to the entire student body. I had memorized it and after that I handed it to my Ramey. I found out 5 years later it was still being read to the student body at least 2 times each year. It helped because there were new students that had never had a seizure and the information in the essay told them what they needed to do. So information the people around you can help others miles away