Epilepsy Life: A Caregiver’s POV

Hi, I’m Lorrie 👋

I recently saw someone post about Autism acceptance — “Autism should be accepted everywhere.” I completely agree.

But it got me thinking… what about Epilepsy acceptance?

Here are a few thoughts from my journey as a caregiver:

Adjusting to lifestyle changes

When your child is diagnosed, it’s not just their life that changes — it’s the whole family’s. In the blink of an eye, epilepsy can feel like it’s turned everything upside down. Suddenly there are medication schedules, sleep routines, safety plans, and a whole new way of thinking. As a parent, I had to educate myself so I could truly be there for my child and support our family through it.

Coping with stigma and misconceptions

No, epilepsy is not contagious.
Yes, someone can “look fine” and still have epilepsy.
Being left out of gatherings. Canceling plans last minute because of a seizure. People not understanding why. The emotional side of epilepsy is just as real as the medical side.

What works for one family may not work for another. Reducing stress and anxiety looks different for everyone. Maybe it’s naps, books, music, dancing, quiet time — whatever brings peace. You might be surprised what helps once you start exploring.

Seeking support for Epilepsy

If you are a caregiver or parent of someone with epilepsy — or any chronic or invisible illness — please find support. Online groups, in-person communities, wherever you feel safe. It can be an incredibly lonely journey without it. There is so much more available now than when my child was first diagnosed. Back then, I felt alone. No one should have to feel that way.

After diagnosis, everything feels scary. Even activities that once felt normal can feel overwhelming. But it’s not about stopping life — it’s about adapting it. Learning how to participate safely while understanding that seizures can happen anytime, anywhere. Find options that work for your family and move forward with confidence.

Enhancing overall well-being

Staying positive isn’t always easy. Epilepsy can try to tighten its grip. But finding small joys, new hobbies, little “field trips” of discovery — those things matter. No one chooses epilepsy. But here we are. So we learn, we adjust, and we find ways to regain a sense of control.

Epilepsy doesn’t just affect the person having seizures. It impacts the entire family in different ways.

You’ve got this.

Signed,
Lorrie F
From a caregiver’s point of view 💜