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Stigma and Epilepsy (or any stigma)
Although this poem was written by someone with Epilepsy it applies to anyone who has suffered the indignity of being stigmatized be it health related or not.
I’ve had Epilepsy for 53 years, 44 years with unrelenting seizures. I’ve been fortunate to not remember many of my thousands of seizures or many of the insulting comments made by ignorant uncaring individuals.
To me the stigma is worse than the condition.
I've Epilepsy
What's that to you
You look at me like I'm not there
In the street strangers stop and stare
I've Epilepsy
I ask myself
Do you care?
Life with Epilepsy
It's unfair
The ache and pain
The bumps and scars
Seizure after seizure
Tiredness
Forgetfulness
To name but a few
I'm glad it's not happening to you
Please remember
I am a person
With a heart
With feelings too
All I ask is that you love me
For the person I am
Despite my condition
There's a lot I can do
& if you gave me the love and time
You'd see it for yourself too
So please be gentle
Please be kind
Just because I've got epilepsy
I'm still a person
Through and through
I've epilepsy
I hope you see now
Me
I'm just like You
So I've got epilepsy
So what ???
I'm human
I'm just like You
Jake
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@santosha
@baa
I wholeheartedly agree there are more good people than bad. I have also had very good compassionate people care for me and didn't mean to be one-sided.
I was trying to point out that inhumanity towards people still exists towards people with Epilepsy. However, many of those incidents happened in the ’60s & ‘70s when attitudes were much less accepting. I suppose I was feeling sorry for myself and remembering the hurt of some of the incidents and overlooking the good people. I want to forget all of the hurtful situations but somehow I can’t even after 57 years. I will never forget the little boy at the shopping mall. When I woke up from a seizure he was sitting next to me, talking softly with his hand on my arm. Such a special moment, but then his mother yanked him away, making a snide comment.
I wish I could remember more of the compassionate people who offered their help.
Take care kids,
Jake
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1 ReactionJake, I completely understand. We are, after all, only human. I think you can forgive others for being hurtful but we still remember the pain. That remembrance is what makes us more sensitive to others and try harder not to hurt them. I’m just guessing those awful experiences have made you a compassionate, caring person who treats others with genuine respect! God bless you this day! Baa
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4 Reactions@jakedduck1 - I've seen your postings on the neuropathy group and pertaining to your posting of three days ago, I had my first seizure in 1969 and you are right....back then, it was not understood at all. Until the late 1950's many states forbid anyone with epilepsy to get married. I was stunned to find that out. We married in 1972, unfortunately, had seizure on honeymoon and my wife being in the medical field got me help fast. Been on 600 mg Dilantin daily for 51 years. But I recall even in the late 60's and 70's, people would hesitate a little when they heard the word epilepsy. Back then, the stigma was there. Many false misconceptions existed. I've had a few bumps in the road in 51 years. Today, with advanced treatments, people have a better understanding. Stay well.
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3 ReactionsHi Jake (@jakedduck1)
I also do understand you and the point you have tried to transmit in your post. Unfortunately, stigma towards not only epilepsy but also other health issues still exists.
Beautiful words @baa you have shared with us! Epilepsy is an opportunity for us to become more passionate human beings.
I hope that all who went through similar experiences of prejudice will at some point heal those wounds. The support of a psychologist can be of much help.
I wish you all a good coming week!
Santosha
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