This post is part of the Epilepsy Stigma Blog Relay which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!
Since seizures had a name and epilepsy was a known diagnosis, stigmas were attached. Epilepsy Stigmas are one of the toughest barriers to breakthrough. Society often turns the other way when they witness someone having a seizure. It’s the cringing in disgust at the sight of convulsing, losing control of bodily functions. One never thinks this person is perhaps fighting for their life in the midst of it. The world we live in, there’s a serious lack of empathy. The will to just stop to think about the other person. There is no willingness to find the root of the situation or the concern to ask the why. But then you have us, the very rare percentage that will standup and say there’s more to this story. Could you imagine, just for a second, what would happen if people would actually try to learn more about someone else? Learn more about a medical condition, a culture, a way a life? We could set the world on fire with kindness. Dancing in the street, joy, unicorns, rainbows! Ok sorry, I was really imagining. I’m back now!
What is a stigma exactly? Webster defines a stigma as a set of negative and often unfair beliefs that a society or group of people have about something. I think that describes it perfectly. The stigmas placed on those living with epilepsy have been horrible over a number of decades. People with epilepsy were accused of being possessed, women were forbidden to have children in fear of “passing it on” to their fetus, and society believed if you had epilepsy you would be unable to function like “normal” people. Yes, those with epilepsy would not be able to succeed in life due to their condition. These are only a few. One public seizure and that’s just it for you, you are the outcast, put into a box and stigmatized. This is why it took so long for me to share that I have been living with epilepsy my entire life.
If you were not in my immediate family or a very close family friend, you had no clue. I went public with my condition in 2013, when my seizures decided to make a grand re-entrance after I was seizure free for 17 years. See, there’s a fear in sharing with others “I have epilepsy”. You see on television the jokes being made, you see the movies of people foaming at the mouth falling into grand mal seizures, others kicking them or just leaving them for dead. Even worse, you have those living with epilepsy who lose family, friends, loved ones because THEY cannot handle it or are embarrassed. It makes you think twice about sharing. There’s a fear in being labeled incompetent. In many underdeveloped countries, those with epilepsy are denied jobs because of their condition. Believe it or not, it happens in the United States as well. You are forced to make a choice, either say I have epilepsy now and get denied on the spot or hide it, wish and pray you do not have a seizure while on the job and risk losing it. It’s exhausting!
When the decision was made to speak out about my epilepsy, I also decided I wanted to live beyond the stigmas. I wanted the world to know I am not possessed, epilepsy is NOT contagious and I am functioning just like any other able-bodied person. I don’t like the term “normal” because um everybody has something going on with them. Can’t deny that. I wanted anyone who is living with any illness, especially an invisible illness, to know that its okay to share. Their story matters. Understand that not all seizures involve convulsions. I can stand right in front of you and have a seizure and you would never know it. If you feel you are too afraid to speak up, then I will speak for you. No one should live in fear of be reduced by what society think is “okay”.
It’s outrageous the world we live in that something like a neurological disorder has to be hidden. Speaking up for yourself can ultimately save your life. Me personally, I did not ask for my brain to go haywire at 3 weeks old. It’s just the way the cookie crumbled. Not one time did I allow it to stop me from being me. I did not allow it to stop me from achieving everything I have achieved in life. It motivated me to strive to join the community and help others reach their full potential WITH epilepsy. It pushed me to educate others outside the community on what epilepsy is and what it is not. I will not stop until everyone(around the world) is living beyond the stigmas.
NEXT UP: Be sure to check out Digitalash2 for more on Epilepsy Stigma.