Why Talking About Controlled Epilepsy Matters

I’ve had epilepsy for over 30 years. At first, I had mostly generalized tonic-clonic seizures. These are the big, obvious ones. When I fall over and start shaking, everyone can tell I have epilepsy. And I get a reminder — in the form of bruises, headache, weakness and a bitten tongue.

For the last 10 years though, my epilepsy has been mostly controlled. My seizures have switched from being mostly tonic-clonic to mostly focal (aware) seizures, also called partial seizures. They don’t last as long. It’s difficult, sometimes impossible, to tell I’m having them; even my wife doesn’t usually know. Not even when I’m sitting a foot away. And I’ve been having only a few seizures a year, rather than one a month or so.

Other relevant stories:
• What Are the 12 Types of Seizures
• What to Do When Someone Has a Seizure
• Can a Woman with Epilepsy Have a Baby 

You’d think all this would make me happy. Less obvious seizures? Fewer seizures? Should be great, right? But no. If I don’t get reminders that I’m living with epilepsy, I feel less competent to speak out for it. I feel like I should step back and let others who are more affected tell their stories while I stay in the background. I should keep my mouth shut and let the people with “real” epilepsy speak up.

And this is not good. It’s harmful to me, and it’s not helpful to those who might listen to me. Because I do have a story. It might not be as “obviously” serious as others’ stories, but it’s my story. It does affect me, and I need to tell it. My story is not so much about the hospitalizations, injuries and restrictions on living others go through. But it’s the story of taking pills every day and not knowing whether they help, knowing there’s something going on with me that others can’t see, and wondering whether they think I’m faking it. It’s a real story. It’s an important story. And I have to tell it, because it’s about me.

And people need to hear it. They need to know that epilepsy is not just about the seizures and the limitations — all the obvious things. It’s about my neurologist saying, “You’ll be on medications the rest of your life.” It’s about me taking 50,000 pills in the last 30 years. It’s about worrying whether the seizures will come back. It’s about so many little things. People need to hear about the rest of epilepsy. And I need to tell them.