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Speaking Out on E?
Fri, 08/04/2006 - 08:15Sure we've got epilepsy, and we've learned the challenges surrounding it. Not only the medical ones, but the financial walls we have to climb, the employment issues, and probably the most challenging one--the social side. That is, getting those around us (from partner, to fellow employees, to blood relatives, to employers) to accept us as "regular" human beings. I'm sure that the majority of us will reply, "God yes, I know of those problems!" However, how many of us actually take the first step socially and start writing to newspapers, magazines, politicians, and TV stations to get them to consider making our thoughts known? Oftentimes, I think that individual letters are far more impressive than going through social service organizations, for they tend to give us the "Now you're going to be alright" advice, then put our file back in their cabinets, left unattended till we call again.
I've been on TV, had articles published, walked in parades here in NYC, to the point where people actually stop me on the street and say, "Hey, aren't you the one they interviewed the other day?". I'm flattered, of course, but am always impressed by the number of those people noticing me and getting into a conversation mentioning that they have loved ones or friends with epilepsy. In many ways, I feel that the attention given AIDS far exceeds what we "epilepsy folks" have received. It's time we did a bit of public relations on our own. Sure, using an organization such as "my.epilepsy.com" is a wise move, but do consider the further things you can do to take the misunderstanding and fear of epilepsy out of the average person's mind.
Start by writing back right now and pointing out specific things you've done. Who knows, you may give this man even more roads to take!
--George
Comments
Re: Speaking Out on E?
Submitted by ladybug on Fri, 2006-08-04 - 09:43
Good morning George,
I haven't necessarily "done" anything in the past to make people more aware, but am doing it now. I have been asked to speak at my church on women-mentoring-women and am planning to talk a bit about epilepsy. The gal that has been my mentor senior partner in the past has a daughter with epilepsy. (didn't know it when they matched us.) The daughter and I are going to talk about E and how it has helped to have someone to talk to face-to-face that has this and the challenges we have had. We'll probably be speaking to a room of about 70 women. I know that they are planning this brunch for the fall, not sure of the date.
I don't know about you, but I hate the looks I get from people when I tell them I have epilepsy. It aggrevates me more than anything. I have then had people try to treat me like a porclain doll. "I won't break, duh!"
I don't know about others here, but I wait a really long time before I tell anyone. Just to feel them out. If I think I'll be treated different by them after they find out, then I usually end up not saying anything. It's almost like it's my little secret. My main gripe is I don't want to be treated differently.
Take care,
Keri
Re:
Submitted by dundee on Fri, 2006-08-04 - 11:36
edited per request
edited per request
Re: Speaking Out on E?
Submitted by purselover4 on Fri, 2006-08-04 - 09:14
unfortunately, i have not done anything yet to make people more aware of epilepsy. my name's nicole and i am 17 years old. i have had seizures since i was 10. the issue i want people to understand is the fact that when you tell someone you have epilepsy, they usually automatically think "omg, convulsive seizures". where in reality, not all people with epilepsy have convulsive seizures. the word epilepsy, to me, scares people. i prefer using the word seizure disorder because the definition of epilepsy is right there: someone who has seizrues: seizure disorder. i find it less frightening for people and easier for them to understnad. i am trying to get in touch with people here in toronto to hold some kind of conference to notify people of this and also to tal with parents and children who have this disorder. hopefully we can make something of that nicole