Ending the Shame About My Seizures in the New Year

We’ve closed down another year, and my wish for 2018 is that together we end the humiliation many of us with epilepsy feel. To begin, we need to ask the simple question why. Why do we feel this way in today’s culture (at least the culture in the area where I live)? What about other conditions that cause seizures? For instance, are people with diabetes or hypoglycemia embarrassed? They also have seizures.

I hid my epilepsy for more than 30 years before escaping the secret, bringing it to light. I’m open and find most people around me simply want to know more about my condition rather than associating it with something evil, as they may have in days past. However, when I have one of my tonic-clonic seizures, I force down shame, distressed by how ugly it must have looked and if I scared anyone. Did I urinate? Did my eyes roll back? Did I turn gray? Were there children around who were terrified? How many people did I inconvenience or worry? And what did everyone guess was the source of it? Drugs? Drinking?

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I wait to venture beyond my house until my head no longer is in a fog. Concerned friends and coworkers ask how I’m feeling. I look down at whatever I’m doing and mumble “fine,” moving on and hoping they will too. Usually they don’t know what to do, and do walk away or change the subject, though only because I’ve made it awkward.

I can tell them I made “a human mistake,” that I forgot to take my meds. In their eyes, I see they’re relieved my episodes are usually controlled. But I also see (or imagine?) an accusatory “how could you?” pass across their faces. How could I be so irresponsible as to have forgotten meds and put everyone else through the drama of my seizure? And so humiliation settles in. It’s this shame of irresponsibility that keeps me from self-acceptance when my epilepsy hits full force. Having epilepsy is nothing that anyone deserves, but I feel like forgetting my meds is wrong.

I’m at peace with telling people about my disability, but humiliated when I let my trigger grab me. I obsess about the fear, worry and inconvenience the seizure may have caused. Sometimes I still feel shame, but at least I’m not ashamed any longer of the epilepsy itself. My seizures are rare, seemingly coming every two to five years. And it is up to me to keep them away. Only then will I no longer feel epilepsy has its grasp on me.

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Getty image by Victor Tongdee.