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Old 01-31-2003, 09:09 AM   #1
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Location: Eastern Sacramento Valley, Calif.
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sekharp HB User
Unhappy When people don't understand. ...

This might be a touchy subject. Just warning you all in advance. But how do you get people to understand your illness, condition or whatever you want to call it? I mean, it's not as objective as a broken leg or a busted face. Right now, I have people in my life who are dear friends and are very open-minded about what I am experiencing, and how frustrating the medication and the seizures can be -- not to mention all the tests. Another person quite close to me, however, either refuses to believe what's going on or doesn't want to offer any help. I am not looking for sympathy from her or even pity. That doesn't help. All I need is someone to understand the process and discuss what is happening. As other people on this board have said before, you find out really quick who your friends are. Especially with me, my whole medical journey has been a mysterious, frustrating one. (I am looking into support groups in my area, but so far there is only one out there.) Anyway, people still make fun of us when we twitch or our gait is strange or our speech is crazy. How do you all deal with this when you are largely doing it alone? Do you have any suggestions for how I might have this person better understand epilepsy and how it's treated? I don't think she has been around people, day to day, who have epilepsy. Or if she did, they have had it pretty well under control. When I told her about one of my brain scans, and what it could show, she kind of laughed at me. Don't get the wrong idea, this is just how she reacts to things with which she can't deal. Any ideas? It just doesn't seem like a valid condition to her yet, so when I tell her that I could have burned myself during one of my seizures -- I was preparing a roast -- she didn't really care about my fear, just whether I did, and when I am going back to work. The answer is, well, that I don't know. Thanks to you all; you have been so helpful.

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Old 01-31-2003, 04:43 PM   #2
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[This message has been edited by satman (edited 02-16-2003).]

 
Old 02-04-2003, 04:11 PM   #3
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kayakmom HB User
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Sam has this to say" I have had this happen too. I was little when all this started but my two best friends and their parents never did get what I go through. We had been friends since we were babies., But now the guys just think I am weird. I have tried talking to their parents, but the parents just say it is my fault. Sometimes I get mad easy when I have had a seizure or am on meds. THey tease me and one kept throwing a ball at my head to make me have a seizure. They laugh if I am clumsy because of meds or a siezure, because they are good at sports. I can not change them I am trying to stick up for other kids they like to tease.
The best thing that happened for me was to go to Washington, DC, last year as part of KIDS SPEAK UP> I spoke to my Senators and COngressman about how Epilepsy changed my life and how they need to help us. I wrote a book to give them about what it is like. THe best part was meeting 29 other kids who are just like me. They know all abou tthe lousy meds, tests, blood work, feeling yucky. It was cool to just be with them and know they could understand."
A note from mom would add, we can not fully change others. As you said you learn who your true friends are when something like this happens. MOst people will not even listen to us when we have tried to talk to them. Many have belittled our situation, laugh at my worry, and want him to understand why their sons can put him down. One of these moms was Sam's God mother. FOrtunately we have replaced her.
I feel your frustration and hurt so much for you to have to deal with this friend who seems callous. Her inability to deal with your situation should not make your burden heavier than it already is. FInd the support. Much of it is here and on other online communities. Hang in there. May better health find you soon.
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Old 02-04-2003, 04:22 PM   #4
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sekharp HB User
Talking

Thank you so much -- you and your son. I think I might ask my epileptologist, after the EMU is done, to prepare a report outlining my condition and the treatment plan. This way I can send it to this person who just doesn't understand. On Tuesday (Feb. 11), I am going to move to another drug. The catch is that because my liver enzymes are rising, the doctor wants me to try one of the newer drugs that doesn't cause the same liver toxicity. Maybe that will help. I think that if everything is in black and white, it will help her understand. But let me tell you, I am not going to wait around for her to change anytime soon. ... I am getting support from people like you, and I am going to a support group for the first time next month. And I have dear friends here who have been with me late at night, when I have been scared, and when I just need to bawl about the whole thing. You are right about friends. ... I thank you for your kind words and your understanding. It's people like you folks that make it easier for all of us. Education is the key, you are right. I am (or was, before this) a reporter, mostly covering local issues, but I wish my (major) newspaper would have covered this subject more in the past. I never really considered all these things until this happened to me (isn't that what they all say?). I will make a commitment to delve into this should I return. That is for sure. God knows I have not been perfect, and I have said my share of insensitive things. But I thank you for helping people on this board deal with their epilepsy and muddle through. May you find better health as well.

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All of us has an angel, if only we know where to look.
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All of us has an angel, if only we know where to look.

 
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