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.
steady she goes 
Inspiring post! Definitely a goal we can all work on.
What I have heard is that when you know someone has a major illness it is proper to ask if they want to talk about it or would rather discuss something else. That sounds like a delicate dance too but it does place the awkwardness on the ‘healthy’ party.
I agree – it’s to our advantage to know what kind of answer people are looking for. It’s perceptive of you to differentiate what is being asked by what word is emphasized. Depends not just how it’s asked, but who is asking too, don’t you think?
I do think so, yes. And of course, that also makes a big difference in the way I answer!
Not only does it take some listening to know what they really want to know and it also depends on what I feel like sharing at the time and/or whom is asking.
Totally agree with this. Some people are likely to get a whole earful. Others are going to get a “Fine, thanks” no matter how they ask the question.
Amen, sister! -so well said. Man, this made me realize how much more complicated every little facet of your life has become. But, you got this part of it, anyway!
Oh Katie – I resonate so much with this story and I’m sure anyone does who is dealing with a serious chronic health issue. Maybe especially those of us who live in small towns, where you can be astonished to learn who knows what about you. Your understanding of these inquiries and your ways of responding to them are so much more gracious than my own. Please give yourself a warm embrace for this. My own response to having a near-stranger approach me on the street with this question has sometimes been, “I’m doing well, thank you; how are YOU?” spoken with a clenched jaw.