Do you tell people about your epilepsy?

[girlwithadog]

I've discussed with some people at my job because I am pregnant and if I were to have a seizure they will need to call an ambulance and in my "ictal" phase I am too confused to even know what happened.
My mom, inlaws, one brother, husband, one aunt and one grandparent knows. Friend wise I only told two friends, one who witnessed a seizure and the other is a really close friend.
I wanted to post an epilepsy awareness ribbon on my facebook profile but I don't want one of the people who knows to post something to let the world know in response so I'm not sure.
So I was just wondering if you're upfront about it with everyone or if it's a need to know thing? I just worry that people will let the diagnosis define me. This is the same reason no one knows the horrible abuse I went through as a child, I don't want these things to define me, I want to make my own image so I worry.
If you did come forward with everyone, how did they react and did they treat you differently?:e:

 

[arnie]

I'm not shy about telling people at all. My family and friends all know about it, since I've had it for over 30 years. As for other people, I don't just walk up to someone and say I have epilepsy, but if there is an opening, or if I need to tell them why I don't remember them when they were just in the shop that morning, I will just say that I have epilepsy and it has really done a number on my memory. No one has ever seemed bothered by it, and since I am a very normal sort of person, I think it can be a good teaching moment. Sometimes they will have family or friends with e and we can talk about it a little. I actually met one guy who also has e and we could talk about how effed up our memories are, what meds we'd been on, etc. If I have a seizure when I'm talking with them I may ask them if they noticed anything strange. Often they will say no, and at times they will say it looked like I was chewing on something, or thinking about something. If I am having a particularly strong one, where I know I'm getting pale, I may tell them that I'm having one. They usually ask if there's anything they should do, and I just tell them no, that it will pass. Finally, when I was a social worker in a dialysis center I would usually tell my patients about it, and it seemed to help that I had a chronic condition as well and I was living a perfectly normal life. There were a few times when one of the patients would have a seizure and the family would kind of freak out, and I could be there and tell them it was no big deal, that I have had them and everything will be fine. So yes, I certainly tell people. I don't think anyone has ever defined me by my epilepsy, since that is a really minor part of my interaction with them.

 

[2ndchances]

Arnie said pretty much what I was thinking. Epilepsy hasn't defined me either, but it has certainly made me into the strong woman that I am today. It's not something I'd say as I first meet someone, to advertise it, however, if the conversation lends itself, I don't shy away from the topic. My first surgery in 2001 give me nearly 11 seizure-free years, and my second surgery 6 months ago will hopefully continue to be a success. If I can provide hope, and help to someone else going through it, then I'm more than happy. And I've learned that there's a lot of people out there touched by epilepsy.

Raising awareness is always a good thing, in my opinion. The stigma still exists, which is probably your hesitation. I had a really unfortunate experience a few weeks ago with some young girls, complete strangers, when I went out for a run in my Team Epilepsy Toronto shirt. It left me speechless, and had they not been in a car, and driven away, I'd have loved the opportunity to try to educate them (and maybe tell them off a bit :soap That said, if you're worried about posting something for fear of being judged by people that are supposed to be 'friends', then perhaps rethink those people. Just my :twocents:

 

[Cint]

:agree: with Arnie and 2ndchances. Like Arnie, I've had E for over 30 years & I've had CP and TC's in public. I eventually had to tell others about my E so they wouldn't panic and call 911 every time I had a seizure.
I used to tell my son who had a bad case of asthma that his mom has E and he has asthma. Neither are anything to be ashamed or embarrassed about because they are both medical conditions.

Raising awareness is always a good thing, in my opinion. The stigma still exists, which is probably your hesitation.

By telling others about my E, I've had the opportunity to raise awareness about Epilepsy, which IS absolutely a great thing!

That said, if you're worried about posting something for fear of being judged by people that are supposed to be 'friends', then perhaps rethink those people. Just my :twocents:

If people cannot accept you for you, then time for new friends.

 

[KatieCoy83]

I lost a majority of my friends.

I acted in a haunted halloween attraction for four seasons and had a "haunt family" and hung out with people outside of being there. I had rough outbursts frequently and they found it embarrassing. Slowly they just one by one went to Facebook to maintain contact with me. Two good friends stayed. One girl has epilepsy and the other I've known her since kindergarten.

But I met my husband during that period so their absence hurt still but I had him nearly 24/7. Bonded us together pretty well.

 

[QueenieKP]

I am fairly loud and proud. I work in informal education so use my experiences of epilepsy to educate and encourage and teach first aid. As I have seizures myotonic, absence, complex partials and tonic clonic I feel safer that both staff and young people know what seizures look like and what to do.

I am not suggesting everyone should or needs to be a poster child for epilepsy but I certainly feel a duty of care to myself and others to raise awareness and teens are pretty cool and at least once knowing the recovery position has potentially saved a life.

Q

 

[QueenieKP]

Plus they are more eagle eyed than action man the noise they make if I don't wear my medical bracelet. Darn interfering kids.

 

[masterjen]

My seizures are nocturnal and the only time I'm affected is the day or two after (the usual post-seizure affects) and sometimes have very small seizures the day after a seizure - the only time I have daytime ones. So for that reason I don't need to tell most people, as the day after a seizure I don't go anywhere anyhow. The people who know besides family are a couple of neighbors I am close to in case I need help, and close friends - in part because we share everything and also so they understand why I might bail on them if we have plans.

 

[N Sperlo]

I race cars and work in law enforcement. It makes people nervous. I usually keep it to myself.

 

[CQ:)]

I used to have grandmal seizures when I was a baby until I was about 3, then I went 21 years seizure free until I started taking seizures again in May 2002 & most of my seizures were partials.

I have always been open about my epilepsy, when my seizures weren't under control I had a lot of trouble getting paid work so did a lot of voluntary work.
When I did either paid work or voluntary work I would always tell my boss about my epilepsy just in case I was to have a complex partial & let them know what to do.

I had brain surgery on my left temporal lobe in March 2011 & have been seizure free since surgery but I am still open about my epilepsy.

In August I started working full time as a receptionist for a building company.
When I had the interview I was interviewed by the office manager & I did tell her about my epilepsy as although my seizures are under control I can't say I'll never have a seizure again plus I still go to the epilepsy clinic once a year which is a good 3 hour drive each way. The office manager had no issues at all with my epilepsy & told me that if I was to have a seizure just let them know what to do.

The people I work with are fantastic, they are all so nice, down to earth & they all know about my epilepsy. Last week I was talking to one of the ladies who works part time & I said something about my epilepsy. She told me that her son has epilepsy so we were talking about epilepsy, I was telling her about the different seizures & she was telling me how epilepsy affects her son. I told this lady that I won't let the epilepsy affect my life & she said I'm like an ambassador for epilepsy. I grinned & said don't know about that lol.

Epilepsy hasn't defined me either, but it has certainly made me into the strong woman that I am today.

I agree Mel, I won't let epilepsy affect my life & like you I am sure the epilepsy has made me a much stronger person.

 

[AlexC]

I have to because of the need for help when I cannot voice for myself. I let my co-workers know what to do and who to call. It's saved my life once.

 

[Fedup]

girlwithadog

:agree: with 2chances and arnie. I do not shy away from the topic or if the need arises telling them. But I have lost friends ones that I thought were good friends as well.

 

[fuzzalo]

100% be up front about it. its nothing t be ashamed of, and if you were to hit the deck at least they wouldnt freak out and start to panic. im up front about my epilepsy, all my friends know, and everyone i work with as well. pretty much if i am doing something, like surfing, i surf alone due to my mates doing other sports, i just tell who ever is in the line up what the deal is and all is good. nothing ever happens, and i guess its kind of a weight taken off your shoulders because you know someone has your back if something were to happen.

i had this attitude for a long time now, maybe when i first got told i had epilepsy i was a but shy, but now just blurt it out, not like, hi, how are you, nice to meet you, i have epilepsy, but you know, ease into it and if they judge you then i guess they are not good company, but i have never been judged EVER, and im sure you have not either.

soooooooooo

tell the world, do that thing on face book, great idea, the more people who know the better i say

fuzz

 

[fuzzalo]

making people nervous is half the fun though, i always mess with peoples heads, it puts them at ease seeing you poke fun at yourself. as long as you know your cool then they should be cool

 

[Janus]

Yes. It is not a secret in my life. But then, i like to be different and have no shame. My friends call it "shameless agitator" hehe

 

[C0urt]

at my local grocer,

some guy
(I thought you were going to do a trick on your bike, then you just fell over. I didn't know what to do. So I called the ambulance)

I could not help but laugh, but I had other things to do other than sit in the hospital for than four hours

most of the guys at firehouse in my part of town know about me, and i figure i am water tower conversation anyway , and the truck gets called every time so it doesnt matter

 

[mikepen0287]

my job knows about it, since my friend got me the job. though explaining complex partials and absence seizures to people tends to get odd reactions. blows their minds that there are more then just tonic clonic seizures.

 

[QueenieKP]

My big boss has referred me to occupational health for the 3rd time and we were going over the referral for and I had written the types and occurrences of my seizures when he read Myclonic seizures 30 times a day he went they can't be right, and I said well it's halved since you last referred me.

Glad his fingers on the pulse.

Q

 

[Belinda5000]

Do you tell ppl about your epilepsy

I've never had any problem telling people about my epilepsy.
It seems to be people that know my seizures aren't controlled that freak, they wonder how I can go out in public or just go out by myself, and I tell them that's life.
I refuse to sit at home just because I might seize, I've seized and busted my head open plenty of times.


Belinda

 

[JaneP]

I wish I could, but I've learned to keep my mouth shut about it (to put it bluntly). People at school, work, or wherever get paranoid & too proactive about me doing anything without coming over by me & "checking" every few minutes!
Even the D.O.T. I don't tell anymore (now that the 2 year period on filing medical reports has passed). There have been 4 times that there has been miscommunication between my Dr. & the D.O.T. & myself getting the right information about the validity of my D.L.! TWICE I ended up telling the D.A. and once the city attorney that I was told that my license was valid by the D.O.T. but apparently the officers read different on their computer (no, these situations had something to do with information I was giving them on cases.) EVERYTIME the tickets of driving with invalid license were DISMISSED because when they went back & had my D.L. run again, it was perfectly valid -and had been! The city attorney even ripped the ticket up in front of me saying "apparently someone hit the wrong button.". I've HAD IT with the State's computer system. The way I see it, I've had these all my life, I've always had several minutes of warning to pull off the road, get away from machinery or whatever. Most of the time I can tell in the morning when I get up already if one is likely and don't drive. I stay with back roads whenever possible, stay in the far right lane (closer to the shoulder) whenever I can & other things that reduce the possibility of not being able to get off the road. Unless there's a better way someday, I'm not going to end up going through the same exact thing in court again & again whenever the State doesn't do their job right.
Same thing at college....there were times I've had to go so far as to cite Federal Title IX to get them to back down! If I would've just started having seizures a week or a month ago due to an accident or something obviously that'id be different. But after all these years I know my body & how these things tick with me better than anyone else would.