Why I'm Going to Stop Apologizing for My Epilepsy
I look up into all the faces — the concerned, the horrified, and the ones rushing to lift the stretcher. “I’m sorry,” I mumble. And then I lose consciousness again.
I’ve just had a tonic clonic seizure, and I’m embarrassed and overwhelmed because I feel like I’ve caused so much trouble. I know. I know. It’s not my fault I have epilepsy, though the “I deserve its” of adolescence still creep in from time to time. Nonetheless, I feel I must apologize.
Other relevant stories:
• Is Epilepsy an Autoimmune Disease
• Can Epilepsy Kill You
• Is Epilepsy a Disability
But what am I apologizing for? Is it that I have epilepsy or something else?
Here’s where I squint, trying to find the source. My seizure definitely has been an inconvenience, both for me and I feel for others, and it’s scary, especially for those who don’t know I have epilepsy. I forgot to take my meds, which is what led to all of this. I feel I need to apologize for that, but I also feel I should apologize for not having told some of the others I have epilepsy and instructed them on how to deal with it.
Rationally, I’m clear on what should be the bases of the apology. Are those points — inconvenience and scare — really what is striking me when my brain swims up to consciousness and I automatically say “I’m sorry”? Of course not. The apology comes from deep down. It’s the belief there’s something inherently “wrong” with me. I’m odd. I’m less than. I don’t deserve others’ care.
But I shouldn’t let those irrational ideas into my head, be they subconscious or not. We’re all different in our own ways (of course). I have epilepsy. It’s random, and it isn’t my fault. It isn’t any of our faults, we who have epilepsy.
As we all fight to overcome the stigma against epilepsy, it’s important for us to get a hold of this impulse to apologize. If we truly believe we’re as good as others, then we need to act like it. I believe always apologizing encourages others to pity us, essentially to think less of us, and that’s not acceptable.
We can apologize for inconveniencing others and not preparing them for the possibility we may have a seizure, but we never must apologize for our epilepsy.
We want to hear your story. Become a Mighty contributor here.
Thinkstock image by Wavebreakmedia Ltd
I’m blessed with being able to control my tonic-clonic seizures via meds. Nonetheless, I hid my condition for 36 years. Finally tired of the stigma against epilepsy, I began opening up, choosing moments (ideally somewhat casual ones) to tell people I knew well of my epilepsy. The stigma against epilepsy is culturally based, as well as a product of ignorance. It’s up to us, through open discussions and teaching others, to change the perceptions about epilepsy, do away with the stigma. zettera.az@gmail.com
alison-zetterquist