Hey! I have epilepsy.

Carrie Jones
4 min readJun 15, 2022

This has to do with writing, I promise.

One day I was hanging out in the hallway of the middle school with some other moms, waiting for all the sports practices to be over so we could shuttle our kids home.

These two other moms standing next to me were talking about diets and diabetes. They were both on Weight Watchers. One mom has lost tons of weight. The moms talked about the effect of weight on piercing private places and all this incredibly personal stuff.

Then they started talking about sugar and sugar substitutes (Splenda and aspartame).

One mom goes, “That aspartame. I stay away from that stuff. It makes the back of my throat feel funny. I think it does something to rats.”

So I say, “Aspartame gives me seizures.”

And I add, “So does coffee.”

My old dog Gabby who does not care about seizures.

I swear both their mouths dropped open and they both actually stopped talking, which was a big deal, because they NEVER stop talking. I love them. I love their talking, but yeah . . . they are super good at it because they get in a lot of practice.

And when their mouths dropped open, I realized: You can talk about your diabetes, your husband’s joy stick, your own special piercings, your kids’ bed wetting, but you can’t talk about epilepsy.

And, this just totally sucks.

Because I’m someone who is really, really lucky even with epilepsy. I’m pretty hashtag-blessed. And people don’t look at me and think about bias and stigma.

That’s why I have to occasionally drop that truth out there.

Here’s the thing: I know what makes me have seizures so I avoid those things but other people aren’t lucky at all.

(Truth Alert: It does suck to give up beautiful caffeinated coffee and gum),

About one person in every 26 will have epilepsy at some point in their life. And they don’t always have the choice of disclosure, and they just have the stigma.

So? What does this have to do with writing?

Lately, as I’m working on new projects, I’ve been thinking about the choices I made with Belle, the protagonist of my first published book from ages ago, Tips on Having

Carrie Jones

Internationally & New York Times bestselling novelist. Writing tips. Podcasts. Poems. Psych stuff. www.carriejonesbooks.blog