I am now learning that not all of your friends could understand seizures or even want to understand it. I have a couple of friends who could understand it, yet at first they were afraid of me after first discovering that I am epileptic after having it infront of them. One of my friends admitted that she didn't want me to sleep at her house because she didn't wan't to see me having it. I know that seems cold and insensitive, thats how I felt she was after hearing the person I considered my close friend. Later, she learned and is not as afraid of it as she was before.
I just had 3 in front of her yesterday and she was very caring and watching over me.
Recently, she imformed me about some other girls in our social group who are less understanding or ignorant to this health condition, that they did not want me to stay in the same hotel room in Las Vegas over this last weekend. Also, that they have expressed to her and advised her that she should not drive with me late at night. That statement already proves that they are very unfamiliar with my seizures and to comment or make any assumptions of "what might happen" without getting the facts streight is called IGNORANCE! I have nocturnal seizures and have had them for 10 years now, which is why I also continue to drive. I am just on here to share this situation of mine that I just discovered last week and hope for any feedback. I just wish they could understand, but I can't bring it up to them othewise they will know who spilled the beans and that would get her in trouble. Ironicaly, one of the ignorant girl has an uncle who was just diagnosed with epilepsy and I recall talking to her about mine and thought I made it so clear to her that my seizures only happen in my sleep. I guess after sharing with her that I have had seizures while I am awake (a long time ago), she never forgot that.
Anyway, I am just really hurt by all of this. Sometimes I feel so weird when I am around them and don't know if I could even look at them like my real friends. They are sweet and nice to me in public but what matters to me are their deep feelings and thoughts about me. I need people who could understand and accept it, and my true friend tried making me see and accept that not everyone has to. Is that right? After talking to her about it, it just made me begin to feel the same way I used to feel during my adolescent years...left out, empty,different, not accepted and depressed. I even began to feel that depression that causes me to think suicidal again... and raise questions "how much better I would be if i just didn't have to deal with anything anymore"? I get like that a lot specially after experiencing very bad repeated seizures like i did this morning. The after feelings don't feel too good. I feel useless, fatigue, and my mind just can't operate normal. I'm moody, anti-social, I don't look the same in the mirror. My parents don't talk about it to me, I don't have a very comunicative relationship with them. It's usually about fighting or anything negative that my mother could find.
I have spoken to the Epilepsy society, and they can be pretty helpful and self-assuring but those feelings they give me fade away after a while. Or up till situations like this arise. This brings back a lot of my bad feelings I terribly had about myself growing up, and realized now, they are not gone.
Before this incident with my friends, I felt like a normal person (at most times) and lived my daily life and social life just as normal as everyone else does. I go out to parties, clubs, travel and try to make my life as normal as possible.
My seizures have been the topic for the past month with myself, and friends and any significant others. Mainly because it has occured infront of them. After telling some people who I want or hope to understand it, Ironicaly they are no longer in my life. I try so hard to believe that it is not because of my seizures but, I know its a frightening thing to watch and it might be weird to look at me again after seeing me make these behaviors you never could imagine.
I guess I'm in this forum to let out my feelings about my situation and hope for just any words from anyone that would help remind me of how normal I used to feel until I learned that there are still people out there who are ignorant and not able to understand or willing to accept it...Sadly, not even your friends.
Thanks for reading,