Anyone ever been afraid to be around b/c SZ's

[Belinda5000]

I've been told bye one person there afraid to be around because of my seizures.

This person only thinks I have tonic -clonic sz's and I had this person speak to my husband I couldn't reassure her any.
My sz's are mostly in crowds and I feel why would I want to be around someone who can't handle my situation.:soap:

 

[CQ:)]

I've never had any one be afraid of me because of my epilepsy but have had people not understand my epilepsy & assume because I wans't convulsing on the ground I was fine.

I volunteered for a charity organisation for a few years while I was looking for paid word. I became friends with one of the volunteers there & had told her about my epilepsy. She said she had a friend who used to have tonic clonics so she knew what to do. I explained that my seizures weren't tonic clonics & I was more likely to space out, do weird things or not make sense.

Once I was doing my voluntary work & I was in the car with this friend & our boss. I had a seizure while in the car, apparently the other volunteer (who was in the front seat) spoke to me & I didn't answer so she looked around (I was in the back) & I was just staring into space. This was the 1st time she'd seen me have a seizure so she had no idea what was wrong but my boss had seen me take a few partials so he looked in his rear vision mirror & knew straight away I was having a seizure. After I came out of the seizure they told me what happened & the other volunteer told me it was different.
I smiled & said to her that was only a small seizure.

I used to be friends with another lady who knew about my epilepsy but she used to find my epilepsy amusing & used to laugh about. She saw me have a few seizures & would always joke about them or just say nothing is wrong Im just of with the fairies. Lets say I am no longer friends with this person & haven't spoken to her in 2 years.

 

[SlimBlue]

I have had a few close friends who really couldn't bear to see me have a t-c, not that they'd ever leave me alone during one or stop being friends or anything like that- just they hated seeing what I had to go through. One poor guy used to look worse than I did after lol white as a sheet and trembling.

And yeah, most of the people I've ever talked to about E only knew about t-c, but were quite interested in learning about the various types- and to my knowledge were never 'scared' of it or me.

However..

It's unfortunate though that many people's mental space is really only quite small tbh, and some people just don't have the capacity to deal with anything outside the box.

Whether it's through vanity, embarrassment or just plain stupidity - those people I pity.

I never blame people for not knowing about E, or even being freaked out by a big seizure- I have to ask myself how I might have responded before I was introduced to it.

One thing that will raise my ire though is just plain old lack of empathy- there's never any excuse for that- but even that's ok really, coz those people never get a chance to walk away from me- I ditched all those [insert genitalia word of choice] years ago

 

[valeriedl]

If I'm out and meet someone I know or don't, I don't come right out and tell them that I have epilepsy, not embarrassed that I have it though.

If something comes up in the conversation about why I don't work or drive I tell them it's because I have epilepsy. Some of them might give me and odd look and take a step away from me as though they might catch it. I think they are afraid that I may fall to the floor and start shaking uncontrollably at any moment too.

Most people only think there is one type of seizure, TCs. I will explain to them that I normally only have partials describing what they are. I think they some still don't understand what I'm talking about however because the words 'seizure and epilepsy' means 'shaking'.

Some people don't seem to care or will even ask me questions about it.

I ran into a good friend recently who I knows I have epilepsy but I haven't seen her for a few years. It was a very quick talk, maybe 30 seconds, because we were both in a hurry. I was walking in the door and she was walking out.

She asked me if "I was ok up there yet?" pointing to her head and laughing. I started laughing too and said "OH NO, not yet"! I'm not sure if she was referring to before or after I had epilepsy because I was a little loco then too :roflmao:

Going to have to give her a call and see what she's been doing!

 

[giveasmile]

If they are afraid to be around, it's their own anxiety about their inability to cope. It wouldn't matter what kind of seizures you were having, I'm sure the word, itself, freaks them out.

If it was someone close to me, I'd try to educate them or at least desensitize them with some of the educational videos. If not, I'd let them go figure it out on their own.