Awareness,  Epilepsy

Here’s Why Epilepsy Needs Better Representation

Seizures can be scary.

They’re not fun to have and they’re not fun to watch. But does that mean we should be silent?

I feel compelled to talk about something that I’ve come to understand and have witnessed first-hand.

Being our own health advocate is paramount to ensuring we receive the best care available. We turn to reputable health organizations to better understand the condition we’ve been diagnosed with in order to receive the best care possible.

In doing so, why is it that epilepsy is very seldom talked about within health organizations and social media communities? Why are epilepsy patients and advocates seldom looked to for articles or projects to enlighten the public and inspire the millions diagnosed yet certain other illnesses are pulled up on stage without hesitation?

Reality Check:
  • Epilepsy is the 4th most common neurological disorder in the United States
  • 150,000 new cases are diagnosed in the United States annually
  • 1 in 26 people will develop epilepsy at some point in their lifetime
  • An estimated 65 million people worldwide live with epilepsy

Yet seldom is it given the opportunity to be spotlighted.

The Result – Those Uneducated Continue To:
  • Mock people living with epilepsy on social media (Mainly TikTok)
  • Harass people living with epilepsy using flashing GIF’s
  • Display TINY seizure warnings in upper left-hand corners of movies and television shows
  • Portray the actions of an individual having a seizure poorly

No wonder stigmas still exist to this day.

I write about epilepsy and have been turned down countless times by health organizations and communities because epilepsy just isn’t a well-received topic on their platform. One health organization associate revealed to me after turning me down that they don’t have a ton of epilepsy or seizure content on the site to drive people to. Catch those three words “Drive people to”?

“Drive people to”

That could change if they would allow epilepsy patients, caregivers and advocates to speak yet they choose to look the other way. The unfortunate truth is, if it doesn’t drive people to their site, it’s not worthy of their time.

Epilepsy is not worthy of a lot of organizations’ time. How sad. Shut down…turned away…ignored…I know that I am worthy, other patients and caregivers are worthy and epilepsy is worthy of being talked about.

Because it can happen to anyone at any time and is impacting lives in more ways than most people could even imagine.

Think about this the next time you write your article, record your video or take part in an interview.

Epilepsy is not worthy of a lot of organizations’ time because it doesn’t drive people to their site.

Yet, we don’t let it stop us from speaking up and taking action.

Those who live with other conditions and show their support, my sincerest gratitude is given to you.

Do you believe epilepsy needs better representation? Tell me your thoughts in the comments!

Tiffany Kairos

I am a happily-ever-after wife, an epilepsy diagnosee, advocate for epilepsy awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!

2 Comments

  • Avatar
    Patty Livengood

    Hey there Tiffany!
    Spoke with You before and loved it at other places! I’ve become very strong thinking about centuries of People Who had Epilepsy like Napoleon Bonaparte, President Theodore Roosevelt, Vincent Van Gogh, Thomas Edison, Edgar Allen Poe, Socrates, Elton John and the list can go on. Maybe if the General Public begin to see more of this, They’ll understand anyone can have it!

  • Avatar
    Shaun Klopfenstein

    Before surgery I suffered from intractable temporal lobe epilepsy for 20 years. A handful of times my focal unaware seizures generalized into tonic-clonic seizures. Epilepsy was a taboo subject, and I discovered I needed to advocate for myself and educate people around me merely to keep myself safe. Part of my self-education included the discovery of numerous celebrities or their families living with epilepsy. I discovered within myself a level of resentment for these public figures who kept it so buried when my own seizures were so public and so humiliating. I felt that if one living, high profile individual shared with their public, it would move the cause for public acceptance immeasurably. But no; it’s taboo to speak of, it’s an embarrassment, it would hurt their career, it would lower their public esteem. I don’t believe that it, and I’m pretty sure that most of us in this community wouldn’t see that way. I believe that bigger names spoke up, it WOULD “drive people to their site.”

    Thank you for the work you do. I have shared your words with friends and family in spreading awareness for years now. Your advocacy has informed my own, and I’m grateful.

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