There have been times when I couldn't make a party, wedding, dinner, or even work, simply because right before the event, i may have had a simple partial seizure and (like always) would feel uncomfortable, dizzy, drowsy for the next several hours. Sometimes I will need to miss an event out of fear that it will soon happen. Then later on when I see these people (some of them even long time friends), on comes the criticism, jokes, and obvious lack of respect. I guess if I had a missing leg (or something plainly obvious), maybe they would think differently and shut their mouths.
Hi Pro17, I usually have 3-4 seizures/year, but have many "auras" (simple partial seizures). I try not to skip events or work to show that epilepsy won't stop me from living. Some of your friends or relatives may come off appearing as mean or not understanding, but if I were you I'd make an extra effort to attend events even after an aura to prove epilepsy is not controlling you from living. If you really feel you're going to have a seizure, you could warn someone close to you so they're prepared. I hope you feel better.
My situation is a little different from yours. I usually only have focal sez but very very rarely will I have a grand mal. Family and friends understand when I don't feel well and can't make it to things or might have to leave early.
I the thing with me is that the people who don't understand how things work with me are afraid to go places with me alone. I recently asked my boyfriends son (who is 21) if he would like to go to a concert with me because I was having trouble finding someone to go with. He said he didn't want to go. When I asked my boyfriend why he told me he was afraid that I would have a sez with him. This has happened a few other times with other people too.
I just can't understand why people don't realize that I'm probably not going to have a sez when I am with them. I usually ask them to go to public places or events where there a alot of people. I have told them if they get scared because I'm acting weird get help. If they are really afraid that it is really bad as to what is going on with me call 911, but still they just don't understand.
I understand if your talking about the aura, which I guess are simple partials (?). But I can get very shaky, dis-connected somewhat, a little zone-ish and I know it's not just gonna go away but people don't see that or assume it's not that bad. But it's scary to me (even tho I'm learning to handle it). I guess if you're not in a complete grand mal, most don't know about the other types of seizures you can get. Even my husband "gets it" but I don't think he realy does since it doesn't happen to him. I guess I can understand somewhat but I don't take anything for granted now when people say they don't feel good but I don't see it necessarily.
I can completely understand. I hate to feel this way but sometimes I am very embarrassed and ashamed because ‘they’ cannot feel it. I have simple partial seizures and have so for 11 years and my family still thinks I’m doing it for attention. Lol Yea, like I want this kind of attention!
I was getting ready to take my daughter to her grandmothers house the other day and right before I was about to leave, I had a seizure. I waited for about ten minutes (Pretty much falling asleep on the sofa) and my boyfriend said that he will drive. I kept apolizing to him and felt really embarrassed and was still very emotional and started silently crying in the front seat of the car.
I still go to work (although a little frustrating as one of my triggers is the fax/computers) but try not to tell people about my epilepsy because they you at you like your crazy as you are explaining to them that you don’t actually have to convulse to have a seizure. I just find a way to survive the aftermath by quietly laying my head down on my desk and my co-workers know why.
I wish that I did have a friend that lived close by with TLE as I would not feel so alone myself. (In regards to my seizures)
Time does not heal. It simply provides distraction.