Avoiding the Stigma of Epilepsy
Do you hold a stigma deep inside you?
By Julie Hope
When it comes to the word Epilepsy and you are out in the public trying your best to make a new friend you just met, do you tell them you have Epilepsy? Or maybe like most of us we put that idea up in the attic hoping no one will see, or that the topic will never have to be brought up. Don’t worry if you do, this happens all the time. It is something we have been taught to do. Don’t tell, never say boo, and let them find out the hard way.
What happens to us then? This new friend has never seen a seizure, perhaps not even heard of Epilepsy, you nicely forget to tell them and one day you both are sitting having coffee and you have a Grand Mal right in front of him. This scares them half to death!!! Do you blame them? The panic buttons go off and immediately he/she thinks you are like that alien they saw at the movies the night before. Do you still have a friend? Hopefully if they were a true friend they would still be there for you.
This stigma of the word Epilepsy was a learned thing. Where it came from and how it got there deep inside you is not known. It is just there. First you are ashamed of the word itself and that it possesses you, but then you become ashamed at your behaviour of not able to be completely honest with your friend.
If you are a parent reading this, think of how this affects your child. Your child senses your doubt; they hear you making excuses for them, if you could only imagine what this does to their self esteem. It only takes the smallest thing to make a huge implant deep in your child’s mind. Believe me, I have been there, done that, and know from experience that self-esteem takes a long time to rebuild.
People in general can throw rocks, but it only happens once and a while and they go about their business as if nothing happened. It could have been done unintentionally never meaning to hit you. Why mull over that event that only took two seconds to happen, for years to come? Why waste your life on it, when you could be much more productive doing well. The other party surely doesn’t recall the incident when it is his problem not yours to hold.
Sitting your child down after the first diagnosis has been made of the Epilepsy and letting them know what to expect is the best thing you could ever do. If your child is at a very young age and understands seeing, more so than words to describe, you can get right down on the floor and show them what happens. Show them know it only lasts a few seconds and it’s all over.
How much would you like to bet, that this child will think for a moment, then grin from ear to ear and want you to do it all over again, perhaps even joining you on the floor? What does this teach your child? They won’t be nearly as shocked or be insulted when their classmates ask questions after a seizure, why they will probably make a game of it and have everyone joining in. When that child becomes a parent what do you think will happen? He will not hold nearly the fear and stigma you could have. He will maybe even join the medical field trying to learn as much as he/she possibly can about Epilepsy. That child may even become involved in a campaign to raise money for those less fortunate than himself. The child of the future has now evolved, and the stigma of Epilepsy is left behind.
WHAT IS EPILEPSY?
It is a CONDITION or a DISORDER, not a disease.
BUT IT CAN MEAN...
People with Epilepsy are misunderstood by many.
Some are often being embarrassed in front of others.
Lack of independence by having to rely on family and friends to take you where you need to go.
Epilepsy may also limit some of the options open to you
- in getting a job, or that well deserved promotion, or sometimes even an education.
Having Epilepsy may cause you to go on a Disability allowance rather than keep on working.
Watching your life pass you by and wishing you didn't have to wake up another day with it.
Forgetting what you did, what you are doing, and often what you are supposed to do.
Knowing you have to limit and prioritize, often on a daily basis, while other people your age don't.
Feeling like an outsider to the outside world.
Looking good on the Outside, but not always feeling that way on the Inside.
Telling your children "no" to something fun they want to do because you can't drive.
Creating an idea from your heart and realizing you can’t follow it thru.
Losing control.
BUT IT CAN BE..
Knowing that Epilepsy is NOT a mental disease.
A blessing, when compared to other's "thorns in their side".
Knowing this disease will swallow you up unless you give it up to God.
Having seizures while no one knows.
Realising your limits, and that you can't do those things as others might, and then to accepts those limits which will build your character.
Remembering the joy you had doing the things you love.
Knowing that you are an individual and we are all different to the other.
Getting over the embarrassment and not letting it keep you down.
Finding out who your real friends are and being thankful for them.
Learning to look for, and appreciate the joys and blessings in your life.
Discovering yourself even if is by trial and error.
Learning to accept yourself.
Caring and sharing with others as you do understand
what they feel.
E - is for the Extra challenges that we face
P - is for the Problems, different in every case;
I - is for the Importance of a Doctor you can trust
L - is for Learning everything we must;
E - is for Everything that we need to do
P - is for the Pills that help both me & you
S - is for the Seizures we work desperately to control
Y - is for You & Me who will one day reach that goal!
You and me!
Together we can make a difference!
For any comments or information on this subject, or any other questions on Epilepsy or Health, or just to talk to either Julie or Maraika please Click Here
