Description for Epilepsy

[tinasmom]

I was recently reading something that refers to E as "hidden menace". I am just wondering what eveyone's thoughts are on this.

[speber]

The more I pondered it the more I saw where it fits on many different levels to fit the many different forms of E....

From the 'hidden' (as in no known trigger)...
To 'hidden' (as in not talked about publicly maybe?)...

All most menacing indeed...

From my own story (luckily very light on the seizure activity currently!)...
To something more like my aunt Diane's story (seizures since age 2---wears a football helmet in a home and has the brain of a 6 yr old at best at age 54).

The only other thing I could add is there are many other diseases that could qualify as 'hidden menaces'....so something more specific could probably be coined.

[epileric]

My brother recently commented on how people react to me because my seizures are unnoticeable to most people but the post-ictal effects are obvious. He said that someone with visible challenges don't scare people as much because one can know what to expect but to go from "normal" & suddenly appear drunk (got fired for that) or very confused is very intimidating to people & makes them uncomfortable.

[Bernard]

IMO, the word menace connotes a danger to 3rd parties. It doesn't quite fit.

[BuckeyeFan]

The image that popped into my head was that of the sudden unexpected appearance of a danger to myself, i.e. thug coming out of an alley demanding my money.

To me the two words fit well together.

Also agree with the thoughts about people not understanding what they can not see.

[Georgiagirl88]

well..for me, it absolutely was a hidden menace. I went for years undiagnosed and told it was panic/anxiety, when it was not. It was hidden alright! none of the drs. even looked for it until yrs. later when I insisted something was wrong. Also, some in my family really just do not talk about it and don't want to know about it. Like it almost isn't there..or it is in my head.
Still hidden..it's a menace for sure!

MICHELLE

[brain]

I've heard that used before and quite frankly and
to put it bluntly, it's a misconception and disillusion.
It gives people the whole wrong idea of the whole
perspective of Epilepsy itself if they hear or read it.

As far as I'm concerned - it "the phrase" needs to
be wiped out and be implied no more.

I must add an emphasis that it IS an old phrase as
well.

[BuckeyeFan]

TO ME the phrase is fitting of how I feel about the E. It frightens me and triggers the fight/flight response at times.

TO OTHERS I also agree that it is not a very good 'public' phrase as it can cause the misunderstandings that some of you have noted.

I guess my initial response was aimed at MY feelings towards E.

[LynnW]

My initial response to the term was negative.

I feel like the "hidden" part refers to the fact that nobody talks about it, and the "menace" part infers that we are a menace to society.

[Georgiagirl88]

I agree with all of what you are saying. It can be a menace to us when we have seizures and from our own personal experiences. And people do not talk much about it..which it should be. It is an affliction like anything else. Sleep apnea was ignored and not talked about for yrs. and only as of the last few yrs. is it really being diagnosed/discussed and known how serious it can be.Same goes for Autism..for yrs. it was not really understood. Now we are learning more.This is all very thought provoking, isn't it? That's good.

Michelle

[tinasmom]

This term was put in a press release and I just felt that it was the wrong way to describe E to the public. I felt like it was a step backwards in terms of awareness and education. Since I am not the person in our house that has E, I just wanted to know how others felt. Thank you all for your comments. I have expressed my concern with the phrase, so hopefully it will not be used again.

[hawke86]

Very interesting and I agree.