"Now even leaving the house feels like a risk I’m not always able to take."

In 2021, I was diagnosed with epilepsy as well as traumatic brain injury (TBI) affecting the frontal, right, and left regions of my brain. At the time, it felt like my world shifted—but things only became more complicated. In 2023, after more tests and hospital visits, we discovered that I wasn’t just experiencing epileptic seizures, but also non-epileptic ones. That news devastated me.

My life now revolves around staying at home, not out of choice but out of fear and embarrassment. Seizing in public is humiliating—not just the seizures themselves, but everything that comes with them: the anxiety, the sudden loss of bladder control, the stares from strangers. I used to be active, social, independent. Now even leaving the house feels like a risk I’m not always able to take.

We’re still running more tests, and my neurologist believes I’ve likely had epilepsy my entire life, undiagnosed. He also suspects that what I’m experiencing may be connected to MS (multiple sclerosis). When my brain MRI revealed demyelinating disease, I felt like I had been hit by a brick wall. I’m only 36. I never expected my life to change so drastically, so quickly.

I want my story to be heard. I lived a full and normal life—played sports, went to school, hung out with friends—just like any other teenager or young adult in their twenties. But my health began to decline, and it kept declining. I share this because I know I'm not the only one. There are so many others going through the same things in silence. We need to speak out. We need to support one another. We have to stand together as a chronic illness community—because no one should have to navigate this alone.

• EPILEPSY WARRIOR . EPILEPSY FOUNDATION

Connect and spread community: @mama_cadie

Clinical definitions will never capture the full weight of living with these conditions.

But we can.