In the almost twenty years since my epilepsy diagnosis, I’ve heard a slew of uninformed, impolite, foolhardy and sometimes cruel remarks about seizures. All point to the assumptions people make and their downright ignorance. I, too, used to have a lot of the wrong impressions about epilepsy- until I became the patient. So without further ado, here is the feedback of my fellow epilepsy warriors on what we wish you knew:
“It’s not just the seizures. It’s the mental health toll.”
“People need to know proper first aid, things not to do especially. It’s scary how many people still think they should put something in our mouths.”
“It’s not something you can get over like the flu. Epilepsy also is so draining.”
“We can’t control when we have seizures. And an ambulance doesn’t always need to be called.”
“I wish people understood that I don’t forget things they tell me because they are ‘unimportant’- I forget because of my seizures, meds and brain surgery.”
“What my co-workers should or shouldn’t do. My supervisor thinks stress at work causes seizures. I need them to know that while stress is an issue, it’s not always the case.”
“A seizure isn’t always what they show on TV…some of the same seizures can vary person to person.”
“The time recovery after a seizure. I’m not lazy, I just don’t have the strength.”
“I’m not a nut case just because anxiety and stress trigger seizures.”
“Just because you can’t see a physical seizure doesn’t mean I’m perfectly fine!”
“There are so many ‘off’ days or feelings, and I hate not knowing what’s happening and the stress of the pending possible seizure, and then the stress that I put on others with the extra crap they have to do for me. It’s not the seizures alone, it’s the rest that goes with it.”
“Not all seizures are the tonic-clonic type and they don’t all come from the same place!”
“I wish people would be kind to each other no matter if you have a disability, talk to them and get to know them before you judge.”
And that, my friends, is the perfect way to end this discussion.
