i'm new here. I think it's really great
that sites like this exist. While many
of us have supportive family and friends,
it's often hard to find someone who can
truly relate to us. After reviewing many
postings, I have a couple comments that
i'd like to share.
First of all, we are not "epileptics." we
are people with epilepsy. Why should we
define ourselves by a disorder? It's no
secret that epilepsy has a terrible
stigma; referring to a person as an
epileptic doesn't help to make things
better.
Also, i've noticed a few postings had very
angry and insulting responses. Calling
names doesn't accomplish anything. This
forum is here so we can support each
other. If incorrect or disagreeable
information is posted, it is still
possible to respond in a respectful
manner. It was so nice to see that two
members apologized to each other through
their postings after a misunderstanding.
That really shows maturity, and the kind
of support they displayed to each other
was really touching. Thanks for that.
I'd be interested to know how this message
was received. Do you agree?
...Disagree?
My sincere best wishes to everyone.
Jen
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Alice in Wonderland
New User, Becoming EHEALTHy
Joined: 07 Feb 2004 Posts: 46
Re: a Few Remarks Posted: 06-12-04 13:16pm
sleepyjen
wrote:
we are not "epileptics." we are people
with epilepsy. Why should we define
ourselves by a disorder? It's no
secret that epilepsy has a terrible
stigma; referring to a person as an
epileptic doesn't help to make things
better.
i used to feel the same way, but then
somebody pointed out that if I had
diabetes, I wouldn't have a hard time
saying that I was "diabetic." I would
have no reason to be ashamed of my
diabetes and so I would not be insulted by
that word. Likewise, I have no reason
to be ashamed of my epilepsy.
"epileptic" is only a bad word if you let
it be. It reminds me of some who avoid
or are afraid of the word "epilepsy" and
so instead say "seizure disorder," as if
to say, "well, that's not as shameful."
at the same time, I say this "tongue in
cheek" as I actually do still have a hard
time with the word "epileptic" because of
the stigma it carries. The question I
was asked and the same one I would bring
to this forum is, "do we help the matter
any by avoiding the word or can we better
erase the stigma by using it like any
other word related to epilepsy?"
alice in wonderland
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SleepyJen
New User, Becoming EHEALTHy
Joined: 31 May 2004 Posts: 41 Location: NYC
Posted: 06-18-04 00:44am
You make some good points. Sometimes I
think i'm being a little too sensitive.
Let me make something clear though. It's
not the word itself that bothers me.
Saying "an epileptic waveform" or "she is
epileptic" is okay. (okay I admit the
latter one gets to me a little.) I only
take offense when I see people being
referred to as "epileptics." I just don't
think the word should be used as a noun.
And I feel the same way about the word
"diabetic," although I admit it doesn't
bother me as much because (1) I personally
am not diabetic and (2) it doesn't carry
as bad a stigma.
And it's all about the stigma. The
reason for the terrible stigma is that the
public is so uneducated about epilepsy.
Have you noticed that although countless
celebrities raise awareness and money for
so many diseases, none seem to be willing
to mention epilepsy (and this includes
those who have it)? I'm not saying it's
all on them to raise awareness. We have
to do it. Everyone in my world knows I
have epilepsy and I do my best to educate
them about epilepsy in general. I never
ever try to hide it, and if that puts me
at a disadvantage, let it be.
Even individuals who are in the medical
field can be clueless. I had a professor
(who has a phd in biomedical engineering)
say to the class, "it's not like any of
you are epileptic and would need surgery
for it." it was so much fun to tell her
that I had brain surgery for epilepsy
(especially since I was the top student in
the class). I really wanted
to educate her, so I was disappointed when
she didn't care to learn a thing about it.
|
danceman
New User, Becoming EHEALTHy
Joined: 17 Jul 2004 Posts: 22 Location: Australia
Stigma With Epilepsy And Supprt Posted: 07-18-04 07:17am
sleepyjen
wrote:
you make some good points.
Sometimes I think i'm being a little too
sensitive.
Let me make something clear though.
It's not the word itself that bothers me.
Saying "an epileptic waveform" or "she
is epileptic" is okay. (okay I admit
the latter one gets to me a little.) I
only take offense when I see people being
referred to as "epileptics." I just don't
think the word should be used as a noun.
And I feel the same way about the word
"diabetic," although I admit it doesn't
bother me as much because (1) I personally
am not diabetic and (2) it doesn't carry
as bad a stigma.
And it's all about the stigma. The
reason for the terrible stigma is that the
public is so uneducated about epilepsy.
Have you noticed that although countless
celebrities raise awareness and money for
so many diseases, none seem to be willing
to mention epilepsy (and this includes
those who have it)? I'm not saying it's
all on them to raise awareness. We have
to do it. Everyone in my world knows I
have epilepsy and I do my best to educate
them about epilepsy in general. I never
ever try to hide it, and if that puts me
at a disadvantage, let it be.
Even individuals who are in the medical
field can be clueless. I had a
professor (who has a phd in biomedical
engineering) say to the class, "it's not
like any of you are epileptic and would
need surgery for it." it was so much fun
to tell her that I had brain surgery for
epilepsy (especially since I was the top
student in the class). I really wanted
to educate her, so I was disappointed when
she didn't care to learn a thing about
it.
i fully agree ,there is a stigma with
epilepsy and the word epileptic , I have
said to friends etc I prefer not use the
words seizures or fits either, I instead
use the term "turns" .I am from australia
and there is a lack of public awareness
,education /support and money raising for
epilepsy as compared to asthma or diabetes
.
Saying he or she is epileptic is like
branding you , and mud sticks, yet if you
said he or she was asthmatic itn wouldnt
have the same effect.
It really gets down to public awareness
and education .
In australia there is no financial support
for people with a disability that is
"chronic" that needs constant medication
to enable you to just live day to day. I
believe perscriptions for medications
should be at a reduced rate for those with
such conditions as epilepsy and other
chronic conditions
in australia the current base price for
medication (i use) is au$23.10 and our
government is increasing the price of
perscriptions by au$6.00 as of january 1
next year to fund thier election promises,
that to me shows lack of sensitivity and
understanding,they should leave scriptsa
alone and increase something that is not a
necessity
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Alice in Wonderland
New User, Becoming EHEALTHy
Joined: 07 Feb 2004 Posts: 46
Posted: 07-18-04 17:36pm
I recently discussed this with my fiance,
who also has epilepsy. (we met by way of
a forum similar to this one). We both
agreed that in theory, there is nothing
wrong with the word "epileptic," (just
like diabetic), but we both also conceded
that because of the stigmatism, we don't
really like the term either.
I really wanted
to educate her, so I was disappointed when
she didn't care to learn a thing about it.