@dannoyes
Hi Dan,
You've touched on something really important here.
The first time I had a tonic-clonic seizure—until then, I'd only experienced focal seizures, which remain my most frequent type—I was at home with my husband. He knew exactly what to do, but later told me how distressed he felt watching it happen.
If my husband, who lives with me and understands my condition, felt that way, imagine what it's like for people who barely know about epilepsy, have never witnessed a seizure, or don't know how to help.
That experience made me reflect on how I approach this.
I started by telling close friends about my epilepsy—and thankfully, most embraced me. Later, I informed people I see regularly: my Pilates teacher, hairdresser, neighbors. I kept it simple: "If I have a seizure, call my husband."
But when I had my first complex focal seizure during Pilates and my teacher couldn't reach my husband right away, I realized this wasn't enough. I needed to provide clearer guidance in case of a seizure. I also started wearing a medical alert bracelet, though the information on it is still fairly limited.
But how do I deal with this with friends I haven't seen in a while, or with strangers?
I confess I am still thinking that through. Recently, I heard about a solution that might help some of you. Someone I know who has mostly complex focal seizures recently shared that he carries business-sized cards with his condition and what to do during a seizure. When he feels one starting, he hands the card to whoever's nearby. Of course, this only works for seizures with auras—not everyone has that warning.
Some friends have suggested putting this information on the back of my phone since it's always with me. I'm still thinking about it.
What's worked for you when a seizure happens around strangers or people you don't know well? I'd love to hear how you've been dealing with this.
Chris