The Mighty Logo

5 People You Meet Along Your Epilepsy Journey

The most helpful emails in health
Browse our free newsletters

You’ve been diagnosed with epilepsy. A diagnosis is a life-changing event. Epilepsy doesn’t always present itself to the world and it can go unnoticed by family, friends and the public. With epilepsy being a part of your everyday life, you’re bound to meet a variety of different people along your journey.

Other relevant stories:
What Is Photosensitive Epilepsy
Can I Smoke with Epilepsy
Autism and Epilepsy

Based on my own experiences, here are five people you’re likely to meet along your epilepsy journey:

1. Those who claim you’re faking.

Having epilepsy is a serious medical condition. As the person living with epilepsy, you know exactly how difficult and challenging living with this condition is. Sometimes, family, friends and the public may not. When a person claims you’re faking epilepsy, it can be hurtful and frustrating. Don’t let inappropriate and disrespectful comments discourage you. Rather, be motivated to overcome your challenges and be the better person.

2. Those who are unfamiliar with epilepsy, yet have a long list of ways they’ve heard puts an end to seizures.

The grapevine. The mighty grapevine of information. We often hear so much information through the grapevine, yet cannot always be certain what is fact or fiction. It’s important to take information through the grapevine with a grain of salt. Not everything you hear or read is accurate. It’s always important to speak with your doctor before trying anything.

3. Those who act interested to learn about epilepsy yet in fact have little interest.

We want to educate family, friends and the public about the condition we live with to eliminate the stigma and the fear associated with it. So what do we do? We talk about epilepsy. We talk about living with epilepsy, how epilepsy personally affects our lives. Some people are engaged and eager to learn all they can so they can help make life easier. For others, since the condition doesn’t personally affect them, it quickly becomes a topic of little interest, which is rather unfortunate to witness for those affected by epilepsy.

4. Those who completely understand your journey.

It’s easy to feel alone within your journey — especially if you’ve never met another person living with epilepsy. It’s important to remember that there are people all around the world who feel the exact same way you do, who completely understand your journey. There are a multitude of communities, groups, etc. Your doctor can even help connect you with a local group to meet people who understand what you’re going through. Within these communities, there are people who’ve been diagnosed, families and even friends of who are broken and have been made whole again. Whatever point you’re at right now, you might find someone or multiple people at the very same point. It’s within these communities that you become motivated, inspired, uplifted, renewed and even strengthened. You have the opportunity to provide the same to others too.

5. Those who are filled with wisdom and inspiration through and through.

It’s always good to have wise and inspirational friends by your side who encourage and fill you with great wisdom. The wisdom of someone who’s walked through life for a longer period of life is invaluable. Having diverse people in your life can be a completely positive experience. To hear the journeys of another opens the door for avenues you may have never expected to find. It could very well be the beginning of a lasting friendship and support.

Experiences with one another help us realize that we are indeed not alone in this fight.

No matter who it is we meet along the way, whether good or bad, allow it to be a positive, learning situation. You’re your greatest encourager. Always be the best you can be. You never know. You might just encourage someone else along the way.

Have you met these people? Who are people you’ve met along your epilepsy journey? Share in the comment section below.

Follow this journey on The Epilepsy Journey.

Do you have a story about your experience with epilepsy? Please send it to and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Originally published: September 10, 2015
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home