Pushing Past the Social Limits of Epilepsy

Has anyone ever felt like a social burden because of your epilepsy?

I have.

Mostly from family members, but also dates and strangers. See, I have atypical petit mal epilepsy. I was diagnosed at the age of 9 and I am now 26. I have anywhere from 20-50 staring spells per day. Yet somehow I managed to earn a bachelor’s degree and I am starting a PhD in neuroscience in the fall. However, no matter how hard you try, some people don’t give you a break. If you’ve had a similar diagnosis, have you been here before?

Other relevant stories:
• Can Epilepsy Kill You
• Is Epilepsy a Disability
• Is Epilepsy Contagious

The family members who huff and puff to take you somewhere because you cannot drive, treat you like less than human because you have a “less than perfect” nervous system and act like you do not deserve the same rights they do, even though your sister refuses to drive and she has a “perfect” nervous system.

The people questioning your life choices and judgment, from the clothes you wear, to the people you date, to the life goals you manage to achieve despite your “less than perfect” nervous system.

When you have a staring spell in someone’s general direction and they think you’re being creepy or staring at them.

When your potential date is put off by the fact that you have a disability which prevents you from driving, as you could harm yourself or others from being unconscious for 10-15 seconds.

When your boyfriend’s mom says he can do better because she doesn’t want her grandchildren to have epilepsy, even though your epilepsy is not genetic, but was caused by meningitis as a child. (Even if it was genetic, that is still a horrible thing to say.)

If you’ve had to deal with any of this, I want you to know you are not alone.

There are beautiful people who will understand, who will help you get to work or give you a lift when needed, or will see past the stigma, even if they aren’t your own blood. You cannot let other people confine you to a box or decide what is right for you, no matter what your situation is. You have to decide what is best, and let people into your life who align with these values. The sky is the limit. Do not let haters get in the way!