I’m not secretive about having MS, but I’ve noticed that most people seem hesitant to bring it up. They know I have it. I know they know I have it. They want to know how I’m feeling or offer their support, but they’re not sure what to say or whether I want to talk about it. Lovely friends and acquaintances are trying to be tactful, but it can sometimes be a tricky dance.
Take “How are you,” for example. It’s the opener for just about any conversation you’d have. But now that simple question can go two ways. If someone says to me “How are YOU?” then I’ll answer the way I always have. “I’m good, thanks for asking! The weather is lovely in Vermont at this time of year. Yes, John’s getting so big! Work is good! Doing great.”
But if someone puts a hand on my arm, stares very intently at my eyes and says, “How ARE you?” in a somber voice, then I understand that they’re asking me a different question. To me, that’s an MS question, so I’ll answer it differently: “I’m doing really well. I’ll learn more from my neurologist in a couple of weeks, but we’re hoping the drugs are working. Fingers crossed.”
Those are two very different conversations. And I’m fine with either one, by the way! I don’t mind being asked about MS, directly or indirectly, and I really do appreciate the concern. Everyone’s different, but I feel better when the people around me understand what’s happening. On the other hand, it can be depressing and if people don’t really want to know, I don’t want to impose uncomfortable details on them. So I’m really trying to understand what’s being asked before I give an answer.
“How are you” used to be so much simpler.
It seems that learning to talk about a disease or a challenge (or choosing not to talk about it) is something that takes time, both for those of us who have them and for the people we run into at lunch, or at a cocktail party, or at a beautiful wedding like the one I went to on Saturday. In the end, I think it’s all about learning to put others at ease and to accept their concern with appreciation and grace. As with so many things, a goal that probably makes sense for all of us, MS or not.