About two weeks ago on our Facebook page, I asked “What is the one thing you wished people knew about epilepsy?”. I received a lot of great responses to this question. I have decided that we will share some of these answers the next few weeks as well how to address the answers that were given.
One answer that was given was
That everyday we wake up there is that possibility we may have a seizure, and that causes increased anxiety. We live normal lives, but we always have to worry. ~Cheryl Lupo
As I read this response, it hit home. Even though I am seizure-free, I still worry if I will have a seizure at some point again. At times I think, will my children find me dead from having a seizure…… For me, I have decided that I will talk opening with my children and family about my epilepsy. I have taught my children what they need to do if they see me having a seizure. I made them sit and watch a video of someone having a seizure so they will know how to recognize what a seizure looks like. For my family, they have never seen me have a seizure so they have been blessed to have not gone through this experience. I also had them watch the video so they will not be scared if they ever see me have a seizure.
We all worry about having seizures whether we are in the group that is responding to treatment or the ones that are not responding to treatment. This is a concern that so many do not talk about openly. This fear, is a real fear. I would encourage each of you to discuss the fears that you have about your epilepsy with your doctor and close friends or relatives. They need to understand how you feel, as well as helping you to express these feelings. By talking openly this will allow the discussion of epilepsy to continue and spread throughout our communities. This will bring more awareness to epilepsy and the need to advocate, educate and fund research! I look forward to the next year, 6 years, 16 years, 26 years, and beyond of openly discussing epilepsy. Please share with us what your fears are regarding your epilepsy.
