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Old 01-17-2005, 04:35 PM   #1
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healinggarden HB User
What is it about epilepsy no one gets?

AHHHHHHHHHh Another lovely run in with people who think epilepsy is nothing.

I'm very mad right now because what happened tonight. My husband went to go talk with his godmom and his mom. His goddad had a brain aneurism and they were discussing. His godmom complained about we never visit (We don't get along, they are VERY critical of my husband and I.). My husband said because I have epilepsy and then the poostorm began.

His godmom was going on and on about how she knew this one guy who had seizures yet was a member of society and he was normal. what the heck? I'm not normal? I'm just an epileptic, not a human? I'm SO tired of everyone saying that stuff.

His mom went on to say how I should take medicine and get healed and become normal. This woman is a pre-diabetic who still eats tons of sugar a day and yet critizes me for taking a different route to cure my epilepsy.

I'm so tired of how people think they can slam base us with seizures and think it's okay. It sucks I had to sit there as well as my husband and let them blab about my seizures. They think they know and they have no clue. My husband tried to explain it but they said he's full of it. Whatever.

To boot she stuck her husband in a home. Yes. She won't even care for her husband who has had an aneurism. Lovely. I wish we had an epileptic army of info for these stupid people who think they know yet have no idea.

And everyone still acts like I'm deformed for having complex partials.

Pardon my ranting and anger I just can't stand when people say this stuff. What is it with people? AHHHHHHHH.

Kat

 
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Old 01-17-2005, 06:29 PM   #2
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Re: What is it about epilepsy no one gets?

I think this is a very common occurance in society as most people do not understand how much of a pain it can be to live with epilepsy. On the up side they don't burn us anymore....

 
Old 01-17-2005, 07:07 PM   #3
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Re: What is it about epilepsy no one gets?

Hi Kat,

It is going to take awhile before the stigma of E calms down. We all need to continue to push E awareness by educating ONE PERSON, whenever we can. I can't tell you how many people over the years have said, "oh, I'm so sorry" when I've told them Katie was diagnosed at the age of 9 months. Then I list all of the accomplishments that she has made and tell them that we NEVER treated her any different than anyone else and we aren't sorry. Was it tough at times, heck yeah...

Katie has played softball for 7 years (and is a super fast pitch pitcher), has been in Tae Kwon Do for 9 years (a black belt at the age of 11 and currently working toward her Second Degree), taken piano for 8 years (starting her 9th in March), played basketball for 4 years, was on a swim team for 3 years, volunteered at a nursing home, and works at my husband's office during tax season. Those are only the bigger ones...all while having UNCONTROLLED Complex Partial seizures since the age of 9 months!

Would Katie be considered "not normal" then just because she has E? I wouldn't think so! Just because she has a "short circuit" here and there doesn't make her damaged goods. I understand your frustration, and unfortunately only those of us who have dealt with E in one shape or another REALLY get it.

If all it took was a magic wand, I would be waving it all over this board...and everywhere inbetween...

Hang in there and it sounds like you have a wonderful husband who really supports you...that is awesome!

Vicki
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Old 01-18-2005, 10:16 AM   #4
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healinggarden HB User
Re: What is it about epilepsy no one gets?

Thanks all for the support and replies!

Kat

 
Old 01-18-2005, 10:41 AM   #5
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Re: What is it about epilepsy no one gets?

As the daughter of a man who has suffered from huge grand mals for 40 years, I have seen alot of this. My Dad had been mostly under control all his life with Dilantin, but he never had any bad side effects from the drug. But the last few years, his levels have been harder and harder to regulate and he's been having seizures. His last was at work where he fell into a shelf (he was on the pickle aisle!) where he was ordering (manages a grocery store) and broke lots of stuff. Thank God his employers treat him with respect and dignity.

But there were customers calling the store after that incident wanting to talk to the owner and ranting about how it scared their kids, they could've been cut, that man is a liability, blah blah blah. It angered me to NO end.

I think it's the sight of a seizure that gets most people. It makes them feel uncomfortable, therefore, epilepsy is treated often times as a "freak" disease instead of a genuine medical condition. I do know the first seizure I ever witnessed, I was probably 7. It scared the crap out of me. They still scare me and get my adrenaline pumping, my mom too, even though we both know that everything will be fine and it will be over soon. (Of course, my dad is always on his feet, so he does have a tendency to injure himself with falls alot.)

I've been defending my father and fighting the epilepsy misconceptions since I was very young. Many of our friends would be uncomfortable even talking about it. But I'd still hear whispers and see the stares. I don't know what can change them. You'd think education, but even those I've tried to educate either aren't interested or think they know the answers.

The thing that makes me most angry is that noone will ever say anything directly to my dad! It's always a "just loud enough to hear" comment to a coworker infront of a family member, or straight up gossip behind his back.

I don't know that people will ever learn!! I'm not epileptic, but I love an epileptic, and can totally see where you're coming from from a slightly different perspective!
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Old 01-21-2005, 09:19 PM   #6
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Re: What is it about epilepsy no one gets?

True, epilepsy is bad, but it's not the worst thing that could happen to a person. I function well in society. I excel at my job and have lots of different hobbies and interests. At times I have set backs, but all the more reason to push ahead harder when those times are over. If we ever want to get past the image that we think other people have, then we have to stop whining about the condition and move forward. When we fall, we must get up, dust ourselves off, and continue to prove that we are productive, intelligent, goal oriented individuals who will not let anything stand in our way.

 
Old 02-15-2005, 10:59 AM   #7
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Re: What is it about epilepsy no one gets?

I ususally find that when I tell people about my Epilepsy they almost wonder how I function. i am 28 and have had seizures since I was 23. Last summer I was taking a swimming class at my colllege and told someone about it, she then proceded to say "Oh my God, why are you taking this class, you could drown." I just looked at her for a minute and then I told her " I have epilepsy , im not dead, so why should I live my life like I am?" After that we sat and talked and I explained everything to her. I hate the fact that people don't understand it, but the more people that you talk to about it, the qucicker we spread the word and people start to understand.

 
Old 02-16-2005, 10:46 AM   #8
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: What is it about epilepsy no one gets?

The problem with a lot of people is epilepsy is not a "visable" condition. You are not on crutches, you are not missing a leg, you are not in a wheelchair. We would be treated amazingly different if that were the case sadly.

However, being people cannot "see" our condition, we are treated different. At times it seems the old beliefs of epilepsy are still prevelent; "demonic posession", and the need to "isolate" the person. GEEZE why do people act like this. We are people just the same.

I've dealt with it since I was 5. Schools treated me like dirt, and administration was NO HELP to the attacks (mainly physical, but a lot of verbal) I constantly recieved.

Some family members see any condition as an insult. I don't know why. My grandfather can't understand why I can't drive and work 50 hours a week with my seizures and being heavily medicated.

--Travis

Last edited by Travis from MN; 02-16-2005 at 10:48 AM.

 
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