Recently, I had the chance to meet with a family who had two kids with PANS. We had some great conversations, and I’ll probably write a whole other post about our meeting another time. But there was one exchange between me and the seven-year-old that I can’t stop thinking about:
Me: “You’re very brave.”
Little PANDA: “Why?”
He was clearly surprised by my statement. I could tell that this idea was completely novel to him and that no one had told him this before. I didn’t expect a seven-year-old to have spent a great deal of time cogitating on the way he’s handling a disease, but I still found it curious that he had no concept that he was brave for continuing to fight it. I’ve thought about his reaction for awhile, though, and now it makes perfect sense…
You see, when you’re a kid with PANDAS or PANS, you live in a world of fear and anxiety. One day, you were fine, and the next, everything became scary. You don’t understand the things you do anymore, and sometimes, you’re even afraid of yourself because you don’t know when you’ll lose control next. You feel like a coward for being worried about things you know don’t make any sense—things that no one else around you fears. You feel crazy. You feel trapped. You feel anything but brave.
If you’re a seven-year-old living in that kind of world, of course you’d never think about how brave you are. But you can have courage and not even know it…
“You’re brave because you’re fighting against PANDAS,” I told him. “That’s a hard thing, but you’re doing it.”
Little PANDA: “Is my sister brave, too?”
Me: “Yes, she’s brave, too.”
PANDAs are not cowardly for having severe anxiety. They are not weak for losing control of their emotions. They are not crazy for carrying out compulsions. They are not freaks for having tics and other involuntary movements. No, they are children doing their best at fighting a devastating disease that’s attacking their brains—a disease they cannot control. None of us ever wanted to do odd behaviors and angrily lash out at our parents—when we do it, most of us only feel worse about ourselves afterwards. We hate all these symptoms, but we are doing the best we can to get through each day—and that takes courage.
Being brave doesn’t mean you aren’t afraid. Brave is going on in spite of the fear—and this is what all PANDAs are doing every day, whether they realize it or not. I hope more and more parents will start to understand this and remind their children that having irrational fears and continuing to fight them is brave.