Living With Epilepsy and the Weight of Stigma

Being a teenager already comes with pressure to fit in, and epilepsy can make that even harder. From others seeing you as your diagnosis or having misconceptions about epilepsy, stigma can affect how you see yourself.  Teens living with epilepsy face unique challenges but no one is alone in their journey.

Many teens describe feeling:

• Unsure whether it’s safe to tell others about their condition
• Afraid of being judged or left out
• Worry about what friends or classmates will think
• Fear of having a seizure at school or in public
• Stress from managing seizures while keeping up with daily life

These feelings show the impact of stigma and how epilepsy is often misunderstood. Many people find that understanding, education, and connection can make a difference, so no one faces epilepsy alone.

“I want my journey to inspire other kids. Never stop smiling or laughing even through the hardest parts of this illness. Don’t give in to the negative ideas and emotions of epilepsy. … Stay strong and advocate for yourself.” — Makayla Campagnone, 18, “I Want to Inspire Others With Epilepsy”

Share your story to help other teens living with epilepsy.

What Is Stigma and Why Does It Matter?

Stigma happens when people have negative beliefs or treat someone unfairly because of something they don’t understand. In epilepsy, stigma often comes from fear, misinformation, or old stereotypes.

It can look like someone avoiding you after learning you have seizures, making jokes that hurt, or assuming you can’t do things you’re capable of. Over time, these experiences can make you feel excluded or self-conscious. But the problem lies in the misunderstanding, not in you.

“There was a time when I’d cry just thinking about it, and I’d refuse to explain why I couldn’t do certain things. But now, being part of an online support group has made a huge difference. It’s helped me realize that I’m not alone in this …” — Lyzet Nava, “How Support Makes a Difference in My Journey”

Changing the Story Together

eJourney aims to replace fear with understanding and silence with conversation. It encourages people with epilepsy to share their experiences, raise awareness, and correct misinformation.

You and your family don’t have to make big gestures to challenge stigma. Small, thoughtful actions can build confidence and change how others see epilepsy. For example:

• Sharing helps others understand- Personal stories show what epilepsy truly looks like: real people living full lives.
• Facts replace myths- Learning and speaking up helps others let go of false ideas.
• Community creates change. When people living with epilepsy connect and support one another, stigma begins to fade.

Remember to be kind to yourself and continue the activities and interests you enjoy.

When the Weight Feels Heavy

Even when you do everything “right,” stigma can still hurt. If someone says something unkind or uninformed, you might:

• Offer a brief correction: “That’s not accurate about epilepsy.”
• Use an “I” statement: “I have epilepsy, and this is what it means for me.”
• Set boundaries with people who continue to be disrespectful.

If those moments become overwhelming, reach out for support from a parent, counselor, local epilepsy office, or healthcare provider. Talking to a professional can help not just to talk about it but to build helpful tools for everyday life.

“It was not until recently that I learned epilepsy is hard enough without also trying to keep up with everyone else! … I never knew how strong I was until being strong was my only choice.” — Brooke Canning, “Epilepsy Shaped Me Into Who I Am”

Epilepsy is a part of your life but doesn’t have to define it. Replacing isolation with understanding and silence with confidence helps break down stigma.

Sign up for the eNewsletter for epilepsy community and other news.