Who knows about your epilepsy?

Who knows that you have epilepsy? (Who do you tell?)

  • Everybody I meet.

    Votes: 0 0.0%
  • Most people I know.

    Votes: 11 39.3%
  • Some of my friends, my boss, teachers, etc.

    Votes: 10 35.7%
  • Only people who really need to know.

    Votes: 7 25.0%
  • No one.

    Votes: 0 0.0%

  • Total voters
    28
  • Poll closed .

Matthew74

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I am interested in how many people you actually tell about your epilepsy. For the purposes of the poll let's stick to who you have really told, rather than your comfort with telling them, or why. I think it might shed some light on questions like, "Should I tell so and so?", or "How do you feel about telling"?, or even "What is the stigma of epilepsy?"
 

BlueCat

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very few until my sz in my office cube last week - that sort of expanded who knew or at least have a clue. Yes, there's the concern of being judged/the stigma, but I've found my circle of friends have been amazingly supportive. I guess it's like I've told others who kept conditions or troubles private and never asked or help or shared. It made me feel shut out and not appreciated. My friends have reacted the same way-they want to be allowed to be there for me. And it is so appreciated.
 

Eli

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When I still worked I was open about it and also made an emergency call list available. I'd rather not go to the ER!
 

CQ:)

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I'm very open about my epilepsy so all my close friends know & when I start a new job (ether paid or voluntary) I let my employers know.
 

Belinda5000

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Just about everyone I know does know about my epilepsy. most of the people I know have seen have a seizure at one time or another.my seizures aren't controlled so it's not hard to figure out I have epilepsy. It doesn't bother me to tell someone about not at all, it's not like I can help it.I encourage people to ask me questions if they want to know something..
 

knothing

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I tried to tell everyone in my department but we now 5 times bigger than ever so I have no time to deal with it. It is just sad and funny how people react. Some get that stunned look of wow you are really functional.
I do have someone in my dept. that has Epilepsy as well but keeps it guarded and tells nobody new. Unfortunately that person deals with a mountain of issues (not all E) and lives a life of paranoia about epilepsy. We are total opposites and management is just confounded by our differences. I just remind them that E comes in more flavors than they can imagine.
 

Cint

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Just about everybody who comes into my life knows about my E. Like CQ and Belinda, I'm very open about my seizures and if anyone wants to know, I tell them, especially since I live alone and I don't drive. Just yesterday, a friend of mine who had a brain tumor removed, had his 2nd seizure. He called me asking me lots and lots of questions about seizures, will they continue, will he have to keep taking Keppra, how long will he not be able to drive, etc. So, for some, it's ok to talk about.
 
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qtowngirl

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most family, most friends, some of my close clients (self-employed), and all bosses/co-workers (also work for the health authority).
a year ago that was not the case, it was only a small number of people, i was veryyyy private. then it dawned on me a month prior to surg that i would literally be out in the open soon anyway (shaved head, scar, and god-knows-what with my memory), so instead of letting it control me i took control... which meant telling everyone.
'this is who i am, this is what i'm facing, and i'm very excited to learn what seizure freedom means. can't wait to see you when i'm better!!!'

the reactions really ranged, from gaping mouths to hugs and tears to 'oh. wow.' (then back to daily convo). 8 months after surg i don't give a #%&! who knows, and have turned that into a positive by starting an e support group and fundraising for our epilepsy clinic. it's one of those things, when something starts it comes screaming out of the gate full-tilt. it's awesome!
 

N Sperlo

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The closest friends, family, and some co-workers are the only ones that really need to know in my life. Beyond that, I don't really care. I'm open to talking about it.
 

notime

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My parents knows & brother knows. Usually my father can't keep it to himself so usually he goes around to tell everybody, same for my mother she tells her coworkers and other relatives who I do not even know. SO, to be honest I am not really sure. Mostly it's my relatives and people on like this forum. I try to keep it to myself a lot of times, because I've ran into people who insults me and tries to make a joke out of it.
 

ToryMagoo

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For me, for 30 years when "in" the cult, I used
to say "I can count on one hand the people I feel safe enough to
even say the WORD "Epilepsy".

Once I escaped out, in July of 2000, it became THE 1st story I told.
My friend, Bob Minton, handed me a laptop and said "Start telling your story, people don't know it".

I sat down and thought: What is THE biggest story people don't know.
I wrote out "Magoo's worst nightmare"...all about being treated like
a leper when "in". Now when "in"...it was considered awful.

Now out...once I posted that, they (covertly) jumped on saying:
"Magoo...do you honestly think, IF we had a boat and could only
take 21 people...we would take someone like YOU..with your body?"

I sat back and went "BINGO!" Finally, FINALLY this story was out,
in the hands of the regular, non brain washed people. I knew they'd nail them, and they did! It was fantastic. People "came to my rescue" and have done so, for 13 ...nearly 14 years.

On ToryMagoo44 on YouTube---there are over 11,500+ subscribers
and 2,641,505 views :) ((Please swing by and subscribe)) :cheers:

I have had amazingly wonderful support from around the world.
Truly, it's taught me the true beauty of most people. :rose:

Love to ALL :flowers:

Tory
 

Crash

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All my friends know about my epilepsy and my family too.But certainly not my employers.If i want to lose my job then i will tell them.
 
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Ruth

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I do not tell absolutely everyone I see down the street. I tell just about everyone who needs to know. I am very open about all of my health problems.
 
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Certainly everyone close to me. I have it, and have never been ashamed of it. Pretty much everyone I work very closely with at work who needs to understand that some days I am going to be working from home and may need to adjust, change or cancel a meeting knows, but that list is reasonably short. I don't go around telling everyone at work by any stretch but have no issues telling those who I feel need to know, or who I consider friends.
 

nelly

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I'm not open to telling others of my E. I don't want to be judged and labled as the epilepic girl.
 

Ruth

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nelly, doesn't anyone know you have E. I doubt if you will be judged and labeled, but you know your friends better than I do.
 

ToryMagoo

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I think of the many people who have affected my life (and all of ours) by taking a stand against discrimination. Each one put their lives on the line, including Rosa Parks, MLK, Nelson Mandela, Gandhi, the Founding Fathers of our Country, etc. Each one chose freedom over discrimination. http://www.biographyonline.net/people/famous/courageous.html It is a choice and the less we hide, the less others who have Epilepsy will have to suffer the abuses you fear. I understand keeping your jobs, and I am all for that. My message is just that we each should *try* to help make E more acceptable, and something people have compassion for. Peace and love to you ALL :) TLC
 
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