Last weekend I was at the Toledo Zoo, we hosted a small constituent appreciation event where we had a booth set up with our purple signage and Know Lupus sign. A young girl came up to the table and asked, “why are you here?” slightly accusatorily as kids do. I said, “we’re here with the Lupus Foundation.” She asked, “what’s a lupus?” I smiled just a little, she probably thought that it was an animal, after all, we were at the zoo and lupus does mean “wolf” in Latin. I only had a few seconds to come up with an answer to that question in a way a 10-year-old would understand.
How do I answer that? If I’m being honest, we call it a cruel mystery because we don’t know what it is. We don’t know what causes it or how to cure it. Sometimes we can’t even diagnose it correctly. Should I tell her about the inflamed joints? The skin rashes and lesions? The extreme exhaustion? Should I tell her that she just asked the million-dollar question? That, I too, would like to know what lupus is.
So I think, what is lupus? I told her, “it’s a disease actually, it’s a disease that makes your body hurt a lot in a lot of different ways, and we,” I said while gesturing to all my purple banners, “are here to try and help.”
She smiled politely and said, “oh.” And then proceeded to tell me that her favorite animal at the zoo is the cheetah because it can chase her little brother. We both laughed.
After she left, I thought about my own definition of lupus. Lupus is a lot of pain in a lot of ways, it’s hard to sugar coat. But in the same thought, I had another, we are here to help. We, the Lupus Foundation of America, Greater Ohio Chapter, are here to provide guidance, support, education, and compassion to our communities. We want to do more so that in the future when a child asks what lupus is maybe we can tell them that it used to be a disease but now it’s just Latin for “wolf.”