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Old 12-20-2004, 03:02 PM   #1
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healinggarden HB User
Angry Can't Deal with Some People about Epilepsy!!

Christmas is coming up, and there is a big party with my sister-in-laws parents. I have complex partials and I've told everyone in this family a trillion times. There will be about 15 or more people, and I have social anxiety to boot! I always get seizures when I'm nervous and having to be social.

They actually told me to "not have a seizure", and go to the party anyway. Like I can just tell my seizures to take a hike for a day! I tell them I can't go (I don't want to be seizing all over Christmas, not my idea of fun.), and they just keep bugging me!

Does anyone get tired of people's lack of understanding epilepsy? I don't have grand mals or anything. Most people don't believe because they don't "see" the seizures. I've printed phamplets and sent people informative emails but it just doesn't help!

Sorry I'm venting, it just ruins my Christmas

Kat

 
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Old 12-20-2004, 04:27 PM   #2
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KaitiePrincess HB User
Re: Can't Deal with Some People about Epilepsy!!

I'll join your rant for a sec (without taking the flame of course)

I think people can read all the info they want, but until they have it they'll never 'get it' and by 'get it' I mean FEEL it.

It's impossible to understand...I've realized THAT much.

Having a seizure isn't just having a seizure. It's all the HEADACHES that go along with them...and of course I mean that in the literal sense and the all around sense (like not wanting to wreck your Christmas because of them).

People notice I've had a CP, but people just don't understand it drags me down emotionally 'cause I'm so choked that I had one (the set back of meds not working ect). Then I've got the sleepiness for hours, the headaches, the weird feeling....blah blah blah! ICK!

I do NOT blame you for not wanting to go to this party. If I had a sure fire way of avoiding seizures (from stress ect) I would...do whatever you need to do.

Merry Christmas,
Kaitie

 
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Old 12-21-2004, 12:35 AM   #3
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radasjewel HB User
Re: Can't Deal with Some People about Epilepsy!!

Guys if it makes you feel any better I know what you mean only too well. It is called blissful ignorance on behalf of some people. As you say Kaie they have no idea until they get the condition themselves. When I was younger I had a teacher who thought because I looked normal I should be normal. When I had a partial siezure she would carry on and get up me for not paying attention. She would then rap me over the knuckles with a 1 metre ruler. I wold get more stressed in turn have more siezures and get more raps with that damn ruler. Even a call from my neuro did not help. Some people have no idea. Another one I got was when I called in to work sick because I had a siezure that morning and felt out of it. Didn't have to start until late afternoon and I got told "But you had it this morning you should be fine to work by 5pm" ......lol yeah right. Takes me between 2 days to a week to recover.
So you guys I fully understand.
Lori Merry Christmas
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I don't suffer from Epilepsy, I just live with it

 
Old 12-21-2004, 08:26 PM   #4
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tkdmom96 HB User
Re: Can't Deal with Some People about Epilepsy!!

Hey guys...

Adding another rant...some people will just NEVER get it, period. I'm a parent of a daughter with CP's and the comment that "just don't have one" is hilarious! We've heard that one over the years and others. You would think that after having these for 16 years they would eventually get it. AND the fact that it took SURGERY to help (actual brain removal to cause a disconnect) that it WASN'T was easy as they thought it was...blissful ignorance.

It's not like turning the tap on and off!

UHG!

Kat, you do what you need to do...and DON'T feel pressured OR guilty. You need to do what feels comfortable for you, and you only.

Peace to you and enjoy your holiday the way you want to...and if that includes PJ's, slippers and a bowl of Cheerios...go for it!

Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 12-22-2004, 10:39 AM   #5
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buliem HB User
Re: Can't Deal with Some People about Epilepsy!!

Kat,

I'm so sorry your family is behaving like that. I really don't think that anyone can truly understand what you go through if they haven't experienced it themselves. Since it is my son with the E I have to really try to understand how he feels. Since he's ten he isn't that adept at sharing his feelings. I do know that he is concerned about what the other kids at school might think if they knew. So sad that are society finds it so hard to accept others disabilities. Especially when they aren't always so apparent. People feel sympathy for those in wheelchairs or on crutches but find it hard to relate to someone whose brain is different. It isn't a matter of mind over matter in your case for gosh sakes!

I think you need to do whatever you have to to make yourself feel comfortable and to heck with your family.

Merry Christmas,

Julie

 
Old 12-22-2004, 11:30 AM   #6
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LaLasMom HB User
Re: Can't Deal with Some People about Epilepsy!!

Kat,
For the first few years my daughter had grand-mal seizures the neuro she went to kept tell us they were psudo-seizures. All she had to do was want to stop and they would. Like you say-who wants to have those. She broke bones when she had them, fell and cut her face on the ground. Finally a different neuro caught one on a monotor and they realized they are seizures. But we still have people say "just don't get upset and have a seizure" Well DUH why didn't we just think of that??? And all along we thought she had to take that terrible medicine that made her gain weight, be unable to think, walk straight and work. Until the day they are able to understand the brain I am afraid we will always have people say things like that. Just go, have a great time and enjoy your family.
Merry Christmas
Marcia

 
Old 12-22-2004, 06:02 PM   #7
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alittledeserted HB User
Smile Re: Can't Deal with Some People about Epilepsy!!

Katie,
I totally support you and your decision, whatever it may be. It's difficult to live with epilepsy, i have to go through high school with it as well and explaining a hundred times why I can't go to parties or stay up late never is much fun. it's tough and when at every club or every party they have strob lights that just send off my brain like no other having to explain what the hell just happened to like 40 druken kids isn't my ideal way to spend a weekend. So go do what ever you want that is stress free. You're actually quiet luck to be able to avoid yours, others of us aren't that fortunate good, luck and happy holidays!
~alittledeserted

 
Old 12-23-2004, 05:20 PM   #8
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healinggarden HB User
Re: Can't Deal with Some People about Epilepsy!!

Thanks so much for the replies! Sorry I didn't reply sooner, we lost our power in a winter storm.

It's great to have everyone on this group being so supportive! I don't feel so alone in this world writing here

Thanks again for the advice and reading my rant. My in-laws are still bugging me but that's okay. My husband told them frankly if they can't accept the fact I have epilepsy that they can go to : They were understanding for about 5 minutes and then forgot what he told them lol

It's sad how the world just treats anyone who's different. Then again I always enjoyed being "special" as my parents called it lol I just didn't figure out it was seizures for a looong time.

I'm just going to stay home and relax Thanks again for everything! Happy Holidays to everyone!

Kat

 
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