explaining to people - Epilepsy Message Board

couldbeworsaspose · 06-29-2003, 05:29 AM

hello everyone,
Does anyone else get fed up of explaining to people (people they know),that it's nothing personal when we try to avoid everyone.You know the feeling,like you just want to lock yourself away but can't because for some reason you have to go out into public.We take our medicine and the siezures are controled somewhat,but the psycological part is still there isn't it?.They think because we take our tablets,we are O.K.and this is probably because they don't understand epilepsy,or can't be bothered to research epilepsy.Sorry to rant on but I just wondered if anyone else felt this way.

Garry

KittyMom · 06-29-2003, 07:51 AM

How many times have you seen a man or woman with oxygen tanks come up to you and say they were sorry because it might look offensive to you??

How many times have you seen a man or woman with cancer and going thru kimo come up to you and say they were sorry if the loss of hair bothered you??

They point I am trying to get at is this...
There is no one out there who is going to say they are sorry to the entire world for having a disease. You shouldn't go around and say your sorry for things you can not help. If you did it on purpose then I say you owe an appology but since you didn't ask for epilepsy on your "Top 10 things I want before I die" list then I say DON'T SAY YOU ARE SORRY FOR IT OR ANY OF THE EFFECTS THAT COME FROM IT. Say your sorry for the REAL things NOT EVERYTHING!!!!

God Bless You,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

LisaGuthrie · 06-29-2003, 10:09 AM

Hi Garry,

How long have you had E? I don't have it my baby does. For awhile we had really bad uncontrolled sz activity (still not completely controlled but much better). There were days that I would be late for work, or have to leave early - days that due to lack of sleep and stress made me feel that way, because I knew as soon as I walked into the building there would be a million questions.

These people only mean the best, they wanted me to know that they cared about our family situation. What they didn't understand is that I couldn't answer the same things over and over and still be able to WORK. What I did was ask one person to be my spokes person. I would give her updates and she would quietly share with others. This has really worked well and people just tell me now that their thinking of us and nothing more.

Don't know if it helps but it has in my situation.

Lisa and Jake

couldbeworsaspose · 06-29-2003, 01:55 PM

thanks all,
Lisa,I have had T.L.E,since about 8 yrs old,as far as I know.But was diagnosed when 45 (1999).Unbelievable eh?.Sorry to hear your toddler has epilepsy.It must be a worry for you.
Take care
Garry

LisaGuthrie · 06-30-2003, 08:31 AM

Hi Garry,

Thanks. It's been a rough few months. But we see improvement. Jake's got TLE as well. I guess my worst fear is knowing that his focal point in on the left which controls the language area of the brain and not knowing how it will affect his ability to speak or learning to read and write. Only time will tell!

He's a wonderful little fellow, who takes this so much better then his Momma and Daddy!

I can't imagine having E most of your life without an official diagnosis. That must have been very hard on you and your family...

Hang in there with those feelings. And thanks so much for posting them. It helps me to read what others are dealing with so I will be ready for the issues we may have with Jake as he gets older.

For the record, everyone goes through the feeling of wanting solatude, and not wanting to deal with other people. I've always tried to focus on myself when that happens. I know that there's something that I'm trying to work through in my head.

Good luck to you.

Lisa and Jake