Explaining Epilepsy to Kids

One of the hardest parts for a kid coping with an epilepsy diagnosis is understanding what is happening to their brain. Being able to explain epilepsy is empowering for a child. As parents, we care about our children and their self-esteem. Receiving a diagnosis like epilepsy can be confusing and frightening for a child.

Our daughter received her epilepsy diagnoses during kindergarten.  Hearing that you have something going on with your brain is confusing for a 6-year-old.  She kept asking if her brain was broken or sick.

To help her understand her diagnosis, we told our daughter that her brain was having hiccups. Our daughter has absence epilepsy, which most of the time manifests as short quick staring spells. The metaphor came to me on the fly, but it luckily seemed to resonate with her. When talking to my 6-year-old, I wasn't as concerned with the medical accuracy of my explanation as I was with helping her to wrap her little mind around some big and confusing concepts with her health.

Luckily for us, my husband gets hiccups a lot. My daughter was quite amused by the hiccup metaphor.  I told her that the medication she was taking for her "apple-epcy," as she calls it, is going to help her brain stop having hiccups.

We've stuck with this way of explaining her epilepsy to her, and it came full circle a year later when I overheard a conversation between our daughter and her little brother in the car. It went a little something like this:

Son: "Is your brain sick?"
Daughter: "My brain isn't sick! It just has hiccups, and my medicine keeps those hiccups away."

Hearing her able to articulate to her brother what epilepsy meant to her made me so happy. She didn't shy away from the question. She put her brother right in his place and explained to him her epilepsy with confidence.

We try to talk openly with our kids about our daughter's epilepsy. There are times our daughter wants to keep it a secret from people, and there are times where she will sing it from the rooftops that she has something unique and different about her. We let her choose those times.

A recent trip to the eye doctor demonstrated her confidence again when she advocated for herself and let the technician know right away that she has epilepsy. Building her confidence and empowering her with an "explanation" for her epilepsy has allowed my daughter to not only cope with her diagnoses but begin to identify with it.

What are some ways you've explained epilepsy to your kids?

-Abby