Community Forum

Finally Telling People


Hey Everybody!

Okay so the deal is that I'm doing my first presentation on for Communications class on epilesy. This is my second semester in college and I've kinda been hiding the fact that I have it, not that I'm ashamed; I was just scared how people will react. After the first seizure that I had here, everyone freaked; so since then, I've kept it very low key. Anyway, I have simple partial and abscence seizures and I was diagnosed when I was in 8th grade and since then it has been a battle. When this project came up, I got the courage to put my topic in as epilepsy and I plan to tell my class that I have it and explain what it means. I really want to do my presentation on the misconceptions about epilepsy, like how one of my friends thought that I had brain damage just because I have E.  So I was wondering what other people have said to you guys about it? Or initial reactions maybe? Or questions that people usually ask? I want to get most of my information from other people with epilepsy and not just web info or books. I would really appreciate the help and this is the perfect opportunity to spread correct information about epilepsy to at least 50 students, so please help me out, perhaps it would make someone else's life a little easier.

Thanks for all the support 

Shelitha :) 





hi...i want to commend you for being brave and getting out there! I used to be so afraid of telling people and having seizures in public that i ended up with obsessive compulsive disorder. I couldn't ride a bus, go to movies, bowling, etc. but i worked through it.....the important thing is this: it is not our fault, we have done nothing to deserve our epilepsy, so why should we be afraid to be honest? I know the world still has problems with us but it is getting better.....the important thing is honesty....i don't tell everyone...only on a "need to know" basis. If you are going to be working with someone closely and there is a chance they may have to deal with a seizure or two, then it is important to be honest with them so they know what to do when the time comes...but......if you are giving a presentation to people, they do not all need to know.

Hi!  What you are going to do is fabulous.  So many people really don't understand epilepsy - it is sad.  I have had epilepsy for 50 years - gone through alot - and love life!!  The worse thing that ever happened to me was after about 20 years of teaching in the same school district, I had a seizure when I was in the hallway putting up a buliten board.  I have complex partial seizures.  Any how when I came to work the following day there was a substitute waiting to get in my room and was comfused as to why I was in school.  She told me she had been called to be a long term sub for me.  I fiqured there was some kind of mistake so we went to see the Principal who was very conveniently not there.  What had happened was that someone (to this day, I don't know who) saw me have the seizure, told the Principal, she called the Superintendent and asked what to do.  He called the schools atorney and they decided to kick me out of school with out letting me know anything.  They actually told me that they were afraid I might hurt someone!!  Once I got back into school through the teachers union a few months passed and the very same thing happened.  This time I did get called iinto the Principals office, but was told I had to leave and couldn't go down and tell my little 2nd grades why I wasn't going to be there.  It was insane!!!!!  The really bizarre thing is that when I went to a discrimination attorney he actually said that the school was riding a fine line - it was imoral what they did, but not illegal.  So bravo to you for standing up and letting people know that this does exist and is catching.  I am so very proud of you!!  If you can use any other information, write again.      Mary

Wow that is just not cool... They act like its contagious or something (thats something you should put in your presentation, I have been asked by friends if they can catch it) This seems allot like discrimination to me but if the law says it isn't what can you do.

 I think it is discrimination but by law there really isn't anything you can do.  That is why I think it is so great that someone wants to get out there and voice their opinion - the real truth- about epiliepsy!!  Some day things will get normal!  I'm just glad that it didn't happen to me when I first started teaching, I don't know how well I would have handled it then.   Mar

I think that it is great that you are informing your class and the school for that matter of what Epilepsy is and everything that goes along with it.  I actually have had great responses- for the most part, people have just asked me what it is, what I have experienced, and then what they need to do should something happen.

Also, the great thing now is that Epliepsy is covered under the American with Disabilities Act, so once hired, a company cannot fire you due to Epilepsy, or any disability for that matter.  So, whatever evidence is provided, you can fight it if it does not seem fair.  They also have to make accomodations and they cannot refuse to hire you- and really are not suppose to ask you if you have disabilities b/c it is a violation of the law not to hire someone b/c they have a disability.

 So, we have come a long way!  Overall, my largest adjustment has been in my home relationships, because they are who see me all the time, so they deal with the memory loss, tired/fatigue, seizures (which mune have been controlled for 6 years now- YEAH:-)  But they ahve had to deal with the change in my demeanor- BUT, the more information we have gotten, the better it is to accept- yes, I may look normal, but there is something going on with me- so I need you to be patient while I work through this everyday.

Anyway, it is a long journey- but WE WILL make it!



The range of reactions is very wide. I agree that it should be as "need to know" basis. Pick out one person who you feel could handle an incident and really consider this.

It is commendable to come forward however, consider the ramifications for your immediate success in school.

It has been my experience that even the most intelligent, compassionate and informed folks have old stigmatizing responses. Professors, clergy, etc.

AIDS is better understood. Again, I also commend you however, be objective about the class project and give yourself time to consider.

Traumatic Brain Injury in Veterans could be a way to approach the topic without alienating yourself or end up having to rely on ADA ultimately.

Just words of advice from someone who also took this risk recently, it wasn't pretty and impacted career paths.



I think it is great you are doing the presentation!  Hopefully, it will change people's perceptions. I think that for me, the most annoying thing is that I have people assume I have had epilepsy since birth, or that they can catch it. Of course, I have also had people stick items in my mouth.

when i told some of my friends they first freaked out and i think you should let people know that if a friend is diagnosed with epilepsy that it is best not to freak out and that it is impossible to swallow your tongue during a seizure. Try to let people understand that it takes awhile for a person to get use to been diagnosed with epilepsy and that it is a mental disorder and it does not not mean we are mentaly challenge we are just as mentality capable of doing what normal people can do. What you are doing is great and i hope you get a good grade on it.

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