Hope do we manage family and social settings in regards to our seizures??
Go to Epilepsy Awareness on Facebook for support.
Hi Sparkleblue and welcome to the site. The best thing to do is to try and make them understand your situation, live with epilepsy. Have them imagine what it's like . Everything they do on a Daily bases and that they take for granted. Things like , driving and going out to a bar and being able to drink an alcoholic beverage. They don't have to worry about, whether or not they're going to loo loose their job from having a seizure or just being harassed and discriminated by others. Explain how it feels when a stranger is looking at you after having a seizure.
There are scenarios that you can use to make them understand. If they have questions answer them to your best acknowledge. Epilepsy isn't understood too well. A lot is based off of fear and myths they may of heard. Hope some of this helped . I wish you luck.
Try this: "Brainwaves are the worst orchestra on earth. Seizures occur when the brainwaves become the Philharmonic." As the people look at you like you have 2 heads, point out that, unless you are speaking with an epileptologist, you know a little more about seizures than whoever is speaking. Then finish it with a polite way of thanking them for taking an interest and you'll say something to your doctor about their THEORIES.
I too would be frustrating, if I work in a hospital and non of the nurses new what to do for seizure first aide. I can understand to point, if the employees work for a different company outside of a hospital, but in a hospital or clinic facility. Come on!! That's just sad!! I alway new that Dr.'s and nurses both needed a crash course on epilepsy, but not knowing about seizure first aide. I'm sorry to hear that.