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Not telling people
Wed, 10/04/2006 - 22:26Topic: Living With Epilepsy - Youth
Ok well my sister and her boyfriend have motorcycles and one of my sisters friends yelled at me for not telling him that i have epilepsy... i think that it was the right thing to do becuase i havent had one in 1 year and i was doing fine... does anyone think that i was wrong .. and if so why... i think that not everyone needs to know and that its only my business...
Comments
Re: Re: Not telling people
Submitted by Holly Ann on Wed, 2006-12-27 - 23:14
When I've told a person the first words that come out of their mouth is," I'm sorry". I tell them well its not your fault {its like a common frase used when someone dies, moves away ect}.At first it made me mad, it was like they felt it was their fault but, I started saying thankx for worrying but I'm o.k. When I was seizure free I only told those who needed to know plus I can tell a few hours before I have one.Anyone who knows me can tell when I'm having seizure problems {I guess my face shows signs}.I always think it'll go away and just yesterday I came out of a five day {I call it zombie mode} status epilepticus seizure. I'm 37 and live with my parents cause doc's think they are only ones who can recognize them, what an ego my mother has! I'm four eleven and people mistake me for being a teen.My son is taller than Iam! Because of my situation my life is very gaurded, but the people that do know about my epilepsy treat me no different than others. If someone has a problem with me I dont want to be around them because "THEY" will make mefeel uncomfortable! It's great that you have been seizure free for a year, thats Drivers Liscence time isn't it? Focus on whats good in your life and people aren't educated very well in neuro stuff, they still think you should put a spoon in the mouth of a person that is seizing! I got a medical alert braclet that is silver across the top with a black leather band. All the info is on the back and what they say about being an Alcoholic is the same for epileptics. "Once an epileptic always an epileptic". Sucks huh!H
Re: Not telling people
Submitted by groovychick on Thu, 2006-12-07 - 05:29
i know how you feel.i dont want anyone to know what is happening in my life, coz its my busieness not theres.but i do make sure that when i step out in to the street i anm with someone who would be able to deal with me having a seizure. this is for my own safety as well as others.but then i do understand where you are coming from,its a very difficult situration and only you know how you feel at the time and weather you think its safe.and if you dont then you should not do it because you can always do it another day when its a better day but if something was to happen it could make things lots worse. you see if you had had a seizure your sisters friend would not have know what to do and might have caused you more dammage.