This blog post was shared by Young Adults with Epilepsy, a member organization of Epilepsy Alliance America, on May 18, 2026.
It is shared here with permission.
The original post can be found here:
https://www.youngadultswithepilepsy.org/post/when-epilepsy-stigma-meets-understanding-how-one-generation-changed-the-conversation
When Epilepsy Stigma Meets Understanding: How One Generation Changed the Conversation
Wendy Steel
Epilepsy stigma rarely shows up in a single moment—it builds quietly over time, in classrooms, on soccer fields, and in the assumptions people make when they don’t fully understand what they’re seeing. A recent celebration in a school auditorium reminded me how much can change when fear gives way to curiosity and understanding.
There was a time, after my son Austin had a tonic-clonic seizure in third grade, when a parent approached me months later at a teacher appreciation event to tell me her daughter had been traumatized by witnessing it.
I never forgot that moment.
Not because witnessing a seizure can’t be frightening — it absolutely can be, especially when you don’t understand what’s happening. But because what stayed with me most was the feeling that my child had somehow become “the problem.”
Around that same time, Austin was playing soccer when another child yelled “seizure boy” across the field. I remember standing up immediately and walking toward the referee, wanting to stop it before that label could take hold. Moments like that remind you how epilepsy stigma can begin.
What made it even more surprising was that this happened in a highly educated community near Stanford — a reminder that education and empathy are not always the same thing, and that stigma can exist anywhere.
At the same time, I remain deeply grateful because Austin also had the most incredible teacher imaginable — a former nurse who handled the situation with calm, compassion, and confidence. Truly an angel during a time that felt incredibly vulnerable for our family. She even had the class write Austin get-well notes afterward, turning a frightening moment into one filled with kindness and empathy.
That memory came rushing back recently while reading a powerful
People Magazine article about a teacher,
Jessica Gijon living with epilepsy who courageously shared her experience after a seizure in the classroom went viral online with over 15M views. The public response was deeply mixed. Alongside overwhelming compassion were comments suggesting children would be traumatized simply by witnessing a seizure.
And intentionally so.
I wanted our nonprofit’s name to be unapologetically descriptive. No vague title. No dancing around the word epilepsy. For too long, epilepsy has been whispered about, softened, hidden, or avoided altogether.
More often than not, when I say the name out loud, someone quietly tells me they live with epilepsy themselves — or that someone they love does. The conversation instantly becomes personal, vulnerable, and human.
And conversely, I’ve also experienced moments of visible discomfort. Once, after hearing the name of my nonprofit, the head of a private school physically recoiled. No words were necessary.
Those moments stay with you too.
And yet this week, I experienced something completely different.
PICS is a student-led initiative that introduces elementary through high school students to philanthropy and civic engagement. Students research local nonprofits, hear directly from organizations, then present, advocate, and vote on which groups to support.
Being part of this process — and seeing how thoughtfully the students engaged — was incredibly inspiring. Their curiosity and compassion gave us real hope for the next generation of community leaders.
What struck me most wasn’t just their kindness — it was their genuine, unfiltered curiosity.
The students asked thoughtful, matter-of-fact questions. They weren’t uncomfortable. They weren’t looking away. They simply wanted to understand. They approached epilepsy not with fear, but with empathy.
That gave me enormous hope for the future.
And as a mom, there was another moment I’ll never forget: watching Austin stand on stage speaking to a room full of elementary, middle, and high school students with confidence, authority, and grace. Watching young people listen to him not with pity, but with respect, made my mom heart incredibly happy.
Because stigma often grows in silence and discomfort. But these students showed what happens when young people are given the opportunity to ask honest questions, hear real stories, and connect with another person’s experience in a human way.
Instead of reacting with fear, they responded with compassion.
Instead of seeing limitation, they saw leadership.
Instead of defining someone by a seizure, they saw the whole person.
As the founder of Young Adults with Epilepsy — and as a mom — moments like these matter deeply to me. They remind me why visibility matters. Why storytelling matters. Why creating spaces for honest conversation matters.
Medical care is critical, of course. But reducing stigma happens person by person, conversation by conversation.
This experience left me feeling incredibly hopeful — not only for the future of epilepsy advocacy, but for the kind of empathetic leaders these young people are becoming.
So I stay in this conversation, and I invite others to do the same.
Don’t look away.
Don’t lower your voice.
Don’t avoid the word epilepsy.
Speak it. Share it. Ask about it.
Or, as Greg Grunberg says: “Talk About it!”
Because stigma only survives in silence. And there is nothing to be ashamed of in epilepsy — only a future we shape together through awareness, compassion, and courage.
