When you first told someone you had epilepsy, what did they do?

[C0urt]

I have had to remind several first responders I am probably in better shape than they are.

 

[bazpa]

I am fairly new to all of this. I have been having these for 4 years. My family has seen it, but the doctors,I would not listen to me when I tried to tell them something was happening-I was going away. Everyone who is close to me, seemed rather relieved to at least know what the problem was. I was just glad to know that I was not losing my mind! I am ashamed to say that I like most, thought of a seizure as what is or was called a grand mal, and guess I never paid much attention to the fact that law enforcement did not know how to handle this situation. I got a crash course on the day I drove with no memory.

 

[SevenC]

My seizures started out as absence seizures so to be honest I just ignored them. My family were the people who forced me to go to the doctor. I've just recently had to start telling people because they're getting worse and I'm falling out at work etc.

My son's seizures started out as partials or maybe more along the lines of TCs, he passed out, convulsed a little, following a long absence seizure--so the reaction to his was much stronger. We had to call an ambulance for his first seizure.

Sometimes people who don't have epilepsy among friends or family just don't understand

 

[CrunchyFrog]

When I first started having seizures I didn't know what they were. It wasn't until they progressed and I started having Tonic-Clonic that I did some research and realized that the episodes I was having were in fact seizures. I didn't tell anyone until after I realized what they were and even then I really found it hard to explain. My whole family found out when I did because I was in hospital and I'm lucky to have a very supportive partner.
Almost everyone I've told at work have also been very supportive, I've been lucky.

I did have a girl who I ended up having an argument with because as soon as she found out, she would constantly make seizure jokes. Her attitude had an undertone of genuine nastiness that I really took offense too.

Epilepsy is really an invisible condition, I found that when I first started having seizures and had to stop work. Some people thought that because I didn't look sick I just didn't want to work.

 

[bazpa]

I am having the worst time trying to work. I am tired, and cannot concentrate. I hate this, and can see why so many are on disability. The worst part for me is that the seizure drain me in every possible way. When this all started, I thought I was just burnt out. My daughter was to graduate in a few weeks. That was 4 years ago this week. Why do seizure make me so tired, and how do you cope? There is so much I want to do, but have trouble cleaning my house! I know people at work I must have lost my mind-how do you deal with the,?

 

[kostareyna]

I am having the worst time trying to work. I am tired, and cannot concentrate. I hate this, and can see why so many are on disability. The worst part for me is that the seizure drain me in every possible way. When this all started, I thought I was just burnt out. My daughter was to graduate in a few weeks. That was 4 years ago this week. Why do seizure make me so tired, and how do you cope? There is so much I want to do, but have trouble cleaning my house! I know people at work I must have lost my mind-how do you deal with the,?

I never had grand mals so i don't know if it makes you tired or not,but it might be the medication you taking if you take any

 

[lwawro]

I have left temporal lobe epilepsy, which, for me, has no outward symptoms -- it's literally all in my head! I smell smoke 24 hours a day, every day, I feel such strong 'anxiety' (although it really isn't, just feels like it) that I can't breathe and my head feels like it's going to pop off. I completely zone out, and it's impossible to concentrate like that. Being an accountant, it's been terrible. My bosses and co-workers see that I 'look normal' and so act as if I'm a hypochondriac. The only people who really understand are my husband, sister, and best friend. I've stopped trying to explain it to people.

 

[chelsey]

I am a Sports Med major and have tried to use my experience to teach the other people in my class. We are all pretty good friends, so it shocked them to know that I had been having seizures right in front of them in class and they didn't know it. But they were all very supportive and aside from my loving boyfriend they are the first ones to help me when a seizure gets in the way of something.

 

[CallMeSam]

my mother found out at the same time as I did, and she just nodded real supportive. The news didn't really sink in at the time for me (I was on some GREAT drugs from surgery a few days before -- seperate incident, broke my leg about 4 days after being released from the hospital after 2 seizures!).
As soon as we got home she sent off an email to the entire family about what had happened and I got mostly positive responses, cheerful "Chin up Darling!" messages.
my Brother did ask "It's not like...contagious, is it?"

I did get a celebration though, my friends were doing happy dances about it being epilepsy, because the Doctors were terrified it was something worse! An mri, two cat scans, two spinal taps etc worth of "What the heck is going on with this girl!?"

I don't think anyone really thinks about it anymore outside those who live with me, I've been seizure free a year and only my brother, mother, father and a handfull of ER staff/nurses/Doctors/first responders have seen me have one thankfully.

 

[stilldancing_98]

I love my story, my first siezure is when I had the Chicken Pox when I was 10 from a very hi fever. My mother knew what epilepsy was, and no one would believe her. That made her mad. Then I got well and I was at my mom's office that she worked for. Dental office. I had another one. I went to the hospital and was diagnosed. My Dr. explained it to me on a chalk board to me so I could understand it. And explain it. My teacher at the time Mr. Prentice new all about epilepsy and let me get up on the first day of school and introduce myself. I was so eager, and kind of scared. I raised my hand and he pointed to me and said and who are you? I said My name is Teresa Anderson and I have epilepsy. And then he took me up to the chalk board and I explained it to all my friends. That was my first experience. I felt very accepted and my friends had their questions answered. They saw me have them, I was never treated differently by them. How wonderful.

 

[Day]

That's so cool stilldancing. That was a great teacher! :clap:
That may have been the most important thing those kids learned that year!

 

[stilldancing_98]

Thanks Day and welcome here. It made me so I was not ashamed or afraid of it. So other people are not to.

 

[gigi]

first reactions are varied. I have been sporting this condition for over 40 years now. I had an accumulation of jobs along the way, w/o the luxury of holding on to them. Although my seizures have been nocturnal, they have affected me in numerous ways.

The reactions I get are over whelming sympathy, to casual questions relating to the disorder. My major regret has been my inability to have a suitable income, as my husband is a retired cop due to partial disability. Getting hired in my fifties is a feat I have not been able to accomplish. I did place a call to the Epilepsy foundation, and the woman on the other end ask me why don't I just stay home?? Her reaction sums up the frustration about this disorder.

I did have a seizure that was made public because I was on a trip with other people, and the girl I shared the hotel room with called the EMS, and woke up everyone around us. I awoke to faces looking down at me, along with emergency personnel. I felt stupid and embarrassed, especially since my hair was messed up! After that, I felt like the subject for gossip was written on everyone's face.onder:

I told a woman not too long ago about my seizures who I had been talking to for some time, and her reaction was, oh that's not good! Now her hello's are abbreviated as she runs the other way. Oh well, it strikes me as humorous and shallow all at once! Meeting someone with the rescue syndrome can sometimes be a good opening for a friendship. Everyone has problems, this particular one just seems to scare people in my experience.

My family is great, although my elderly Mother told me for the first time recently that she feels guilt about my seizures. It melted my heart, cause I had never known that, and told her it's not her fault. She did say she was surprised I had done as well as I have, did not explore that statement, but I think my parent's over protective nature towards me was not helpful, but understandable.

 

[Jfpinell]

I think my parent's over protective nature towards me was not helpful, but understandable.

The problem I can still not figure out how to deal with is the sudden change in attitude and messages -especially family. They're overprotectiveness suddenly 15 or 20 years later changes to such things as "Why can't you go get a job like everyone else?" "There's nothing wrong with you!" Uhhhhh.....helloooooooo! Like can you say "denial"?.

 

[Redsaber]

My hubby told me after I got out of the hospital that e was the one thing he did not want in the family. He said again the other day. Makes me feel like if he knew in advance he would have never married or even loved me. Maybe I'm just over-reacting.......

 

[survivor]

My family always knew but in my university no one did. during examination i had grand mal. The reactions were of various types. My friends who were gals always knew but boys....................................... one said--- I thought u would die today and he hugged me, other was too confused to say anything, one brought a card written on it--i want to study and study, no food plz as that day i had eaten nothing. But all my friends starting loving and caring more for me. They wondered how a girl so good in studies can have such a problem.

 

[Cinnabar]

I lost two friends. Did I say "friends"? Now, I have a great support group of friends who live close by. Always here for me.