Yesterday I was at a store waiting in line on my scooter when the woman waiting behind me said, “Those things are great”, nodding at my scooter.
“Yep”, I agreed. “They sure are”.
“I had one of those for a while. So what happened to you?”
Her first assumption was that I was recovering from some sort of injury. I told her nothing had happened and that I have Multiple Sclerosis. “That’s hard on you, huh? I knew someone who had that”.
Regardless of how many people know other people with Multiple Sclerosis, most strangers I encounter see a healthy young woman and the possibility that I might have a disability doesn’t compute. It’s not their fault, and I’m typically not offended as long as they are polite. Multiple Sclerosis is a puzzling disease, it can be difficult to treat, doctors don’t know exactly what causes it, so it makes sense to me that it’s difficult for people without it to understand it.
MS can change from day-to-day, even hour to hour, and I think that can be confusing for some people. I can have a day of almost complete normal, but then walk through the hallways at work like a drunk the next day. Sometimes my MS isn’t so obvious, but other times it screams out to the world. I think people expect a disability to be all or nothing. With my MS, it’s somewhere in between.
These frequent changes involved with Multiple Sclerosis can be hard to understand. Equally difficult, I think it’s hard for people to make sense of what they are seeing when they look at me. I’m young! I look healthy! But very often that’s how people with Multiple Sclerosis look to the outside world; just fine.
Living with Multiple Sclerosis has taught me to keep an open mind. Our eyes don’t always tell the full story. I’ve learned to deal with the fact that I’m a confusing image to many people. I admit I’ve not always responded to remarks about my condition with a polite answer. And these days I often full out ignore the people who blurt out inconsiderate comments or questions. While I’ve encountered plenty of idiots along the way, I’ve learned to use the questions as an opportunity to educate. I just want to be understood.