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What I Believe Epilepsy Awareness Month Should Look Like

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For me, ringing in Epilepsy Awareness Month always comes with mixed feelings. I’m thrilled by the influx of community support and awareness amongst those of us with the disorder whilst simultaneously disappointed by the continued lack of government funding and public awareness of those outside of our community.

I’d love to wake up on the 1st of November feeling seen, heard and understood by the world. I know many others feel the same way. Facing a public with archaic ideas about our disorder keeps us isolated and anxious. We need people to understand. As humans, our physical and mental health depends on being understood and accepted.

Other relevant stories:
Is Epilepsy an Autoimmune Disease
Can Epilepsy Kill You
Is Epilepsy a Disability 

My own personal experience is different from every single other person with my disorders. The public would know that if our awareness month looked like others. When I feel down, well-meaning people who don’t have epilepsy love to tell me some iteration of, “You are not your disorder.” Yes, I am. It is a part of me – has always been and will always be. Just as I am my green eyes, my clumsiness and my sought-after-by-mosquitos blood, I am, in part, my epilepsy. It’s singular and unique and has made me who I am today, for better or for worse.

My epilepsy has made me a bit of an enigma. I spend, of my own volition, a great deal of time alone. An ex lovingly nicknamed me Alone Time. I’m an incredibly gentle and nurturing person when I feel well and a huge crab when I don’t. Nothing is funny to me when I’m sick and I never stop laughing when I’m not. I binge-watch Netflix when I’m sick and spend every last second outside when I’m not. I constantly stifle frustration and sadness and anger over my inability to do the things I want to when I’m not well. For a highly independent person, being micromanaged and monitored for months at a time is no fun, to say the least. But for all these tricky nuances, I’m OK with who I am. I am loved by many special people who understand who I am because they are aware. I want this for everyone with epilepsy, through awareness – for their idiosyncrasies to be understood because epilepsy is understood. I want it to feel safe for everyone to come out of the shadows the way I’ve been able to, in no small part due to my adoption of vulnerability and complete lack of embarrassment or fear of who I am. It was no small feat, but it really shouldn’t be a feat at all.

In a perfect world, this month would bring the same influx of articles and fundraisers as our November siblings. The White House press release most of them get would be nice. A lightbulb would go off in Washington and federal funding would, at the very least, match that of other neurological disorders. Right now we lag behind, despite the fact that our population vastly eclipses most of them. Epilepsy is the fourth most common neurological disorder. In a perfect world this federal funding would allow for research into treatments and, maybe one day, a cure for the 3.4 million Americans with this disorderAs many people die yearly from epilepsy as from breast cancer or traffic accidents. We need the equivalent of a Buckle Up or MADD campaign. We need a foundation raking in money the way other major foundations do.

I can’t definitively pinpoint the problem or how to wake up on November 1st feeling heard, but I do believe that it begins with awareness. I’m here to implore you to share your stories if you feel comfortable doing so. I encourage you to call representatives. Share epilepsy foundation fundraisers, petitions and awareness literature on social media. Have one-on-ones. Let people know there is nothing weird or scary about us as Hollywood would have you believe. Many of us, myself included, don’t even have gran mal seizures and those who do come out of it the same beautiful human they were before it happened. The discomfort people once felt will hopefully be replaced by understanding and empathy. For those reading this without epilepsy, I beg you on behalf of my community to do the same for our very under-advocated cause. I hope for a happy November, one of togetherness and love that will push our disorder into the spotlight and us in the direction of self-love and self-acceptance in a world which, for now, often makes it feel impossible to do so. In the spirit of that hope, happy Epilepsy Awareness Month.

Getty Image by noipornpan

Originally published: November 10, 2018
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