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Someone with narcolepsy said that she tells others about her condition by saying "sometimes I, without warning, fall asleep" rather than naming her syndrome. This got me thinking. Is it easier for many of us to tell others by saying "I have epilepsy" or something like "I have seizures?" What's easiest for you, or do you feel the words don't matter?
Just do your best to explain about your epilepsy. If you have family members and relatives, friends and coworkers that you maybe close too.
I would first alert them about my epilepsy and let them know that I Seizure. If they want to know more from there, then I would talk and answer what they want to know
Then there are the ones who don’t care and then the stubborn ones , who believe in what they were told from someone who had hand me down information. A lot of times it’s old information. A lot of the old info, are considered myths today. For example. Putting an object in someone’s mouth to stop us from swallowing our tongue. That’s one of the many epilepsy myths. These people I just don’t try with them.
If you have a friend or family who wants more info on Epilepsy, there are books, comic for kids on Epilepsy through the Epilepsy Foundation ( in USA ) , the Epilepsy Foundation
( USA ) also has a conference , they have ( check with Epilepsy Foundation in your state ) . They explain many things . They may have displays from other orgs. Explaining what they do . There are also activities workshops, other things .
I don’t know about the other epilepsy .orgs in other countries and what they do. You would have to do a little researching.
I tell them about my seizures and what they are like how they make me feel and how to help me if
I have one
I think it depends both on you and the person youre speaking with. Personally, it’s easier to be upfront about it.
@A MyEpilepsyTeam Member i call um seizures when i am not having a seizure. but when i am having a seizures i call um by type. i have difference phases of the same seizure. its in order so if i have the spaceouts, next is the lip thing and so on.
I say I am an epileptic. But it's whatever works for you. If someone told me they have high and low blood sugars I'd say - o, so are you type 1 or type 2 diabetic. Another person might not think anything of it. They may simply sympathize. If I had prostate cancer I would say so. I really dont think it matters...
A MyEpile...
