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artificialsugar (@artificialsugar)

Trying to understand seizures

Epilepsy & Seizures | Last Active: Jul 29 11:53am | Replies (16)

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@jakedduck1

@santosha
“we should not be ashamed by our seizures. I know it is easier to say than to experience it.”
I agree it is much easier to say than to actually put into practice. When I first came down with epilepsy the first part of that year a seizure now & then, no big deal but it continued to get worse. Once a week, every few days, every other day then daily. I was asked to leave school, I had trouble accepting the rejection, stigmas, the onlookers fear and hateful comments, talking behind your back. Walk up to the group who you thought were your friends and everyone is speechless. I wasn’t as brave and strong as I thought. I had a nervous breakdown. But I decided I had to accept my condition and live accordingly. There were many things I couldn’t do but I concentrated on doing what I could.
Sadly too many people refuse to accept or come to terms with their Epilepsy. Most people I talk to choose to hide their seizure disorder. If we can’t be honest and forthright about our condition should we expect others to be more understanding? I believe those who hide their condition do so out of shame and embarrassment and thereby perpetuate the Epilepsy stigma to continue. People will accomplish more good for our cause by being open. I’d much rather let everyone know so they knew what to do in case I have have a seizure and it’s an opportunity to dispell the myths.
Have a happy and hopefully seizure free day,
Jake

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Replies to "@santosha “we should not be ashamed by our seizures. I know it is easier to say..."

Hi @jakeduck1, Good Morning

Thanks for sharing your experience and opinions!!!
I agree with you, it is very important to accept our condition and live accordingly. Not accepting it brings turbulences and just turns things more difficult. Again it is easier to say than to practice it. I got quite angry when I got diagnosed some years ago, at the age of 48 years. The progress of the disease, hard times during several treatments, and the way I have reacted to it have limited my life to epilepsy. But with the support of my neuropsychologist, I have today a better acceptance of it. We are much more than the bad things that have happened to us!
Those who have prejudice around people with epilepsy should be the ones to be ashamed! Who has limitations? We or people that cannot see the other and have no compassion? As a famous Brazilian chef has said (his daughter was born with epilepsy): “ You are a very special daughter who teaches me a lot. You are a great fortress, an example for everyone. Never give up on being the best you can be. Because you have been doing that since the day you were born”.
However, I confess I continue to hide my condition from certain people, those who I know have little compassion and could hurt me a lot. I am not that strong yet. Still, I agree when you say “I believe those who hide their condition do so out of shame and embarrassment and thereby perpetuate the Epilepsy stigma to continue.” Hope to be able one day to be 100% honest about my condition, not hiding it from anyone. Once I have heard that we give others the authority to mess with us. This is somehow true.

“We cannot choose what happens to us, but we can choose how to react to the experiences” Edith Eger (author of The Choice).

Lots of santoshas (contentments) to all of you!

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