I Am Not 'a Person With Epilepsy.' I Am an Epileptic.


There’s lots of discussion in chronic illness circles about how to describe those who have chronic health conditions. Is he a diabetic, or a person with diabetes? Is she an epileptic, or a person with epilepsy? “Person first” terminology is the accepted norm — we’re supposed to be people with epilepsy, not epileptics.

I understand the idea, and I use that approach for others. But for myself, I beg to differ. I am not “a person with epilepsy,” I am an epileptic.

I don’t mean to imply that epilepsy defines me, or that I am no more than my epilepsy. But epilepsy is not something that’s “with me,” something that came in from the outside and attached itself to “my real self.” Epilepsy is part of me. For better or worse, it always has been. And surprisingly, I think it is “for better.”

I used to be angry at my brain. What was wrong with it? How dare it act up like this? Then, only a few years ago, we found the cause of my epilepsy. I have some severe structural abnormalities in my brain. Many people with these abnormalities have intellectual disabilities. But not me. Many of them start having seizures before age 10. But not me.

I’m luckier than most. And now, instead of being angry at my brain for imposing something on me, I appreciate how well it works, given its condition. I’m more aware of it. I take care of it. I’m happy with it. I wouldn’t have had that without epilepsy.

I have an epilepsy awareness blog, and I update it regularly. I have a passion, something I’m not afraid to talk about and advocate for. I wouldn’t have had that without epilepsy. I have a newfound sympathy with people with chronic health conditions of all kinds. This, too, not without my epilepsy.

Epilepsy has given me lots of grief — fear, frustration, loneliness, even despair. But it’s also given me pride in myself. It’s developed parts of me that weren’t there before; things that lift me up. Things that help me lift others up.

Epilepsy is not who I am. But it has fundamentally shaped who I am. More than anything else I can think of, epilepsy has brought out things about me that I can rejoice in.

Is epilepsy a pain? Absolutely. Is it scary? Of course. Did I sign up for this? No. But it’s important to me. I wouldn’t be who I am without it. Because of my epilepsy, I’m proud to be who I am. And so, odd as it might seem, I’m proud of my epilepsy. And I call myself an epileptic.

Getty Image by Poike

Follow this journey on Epilepsy Empowered.


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