Multiple Sclerosis: Diagnosis and Treatment
Living with Multiple Sclerosis: How to Deal With Rude and Mean People
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Dear Mr. Manners: I was diagnosed with multiple sclerosis (MS) a number of years ago, and I think I live with my condition pretty well. After moving to a new city, however, I find myself having to “introduce” my disease all over again. Many people react in very odd -- sometimes hurtful – ways: “At least it’s not cancer,” they’ll say, or “oh, my [fill-in-the-blank relation] died from that!” Sometimes it’s just a look of shock, pity, or incredulity. I’m wondering how to react to someone’s rude, disrespectful, or just plain mean response to my disease. It’s not as if I can take my revelation back; I only tell people who I feel should know. What is the proper rejoinder to such painful comments?R.R, New York, NY
A:When I casually asked my friend and neighbor Virginia Smith, long diagnosed with MS, for her thoughts on your question she penned an amazing response. Instead of my usual column, I’m going to share her letter with you:
“Dealing with this kind of business has gotten easier with age, for me. I've had MS for 21 years now, and it's always been invisible. Your correspondent has touched on some of the most annoying types of remarks. Generally, I try to turn it around on the person who's making the lame comment. For the ‘at least it's not cancer’ remark, I would say something like, ‘I've really glad I don't have cancer. So how is your job going?’ For the ‘my relative died of that,’ say ‘That's such a shame. How 'bout those Duke Blue Devils?’ You get the idea.
“I suppose most people are well-meaning. They get a little freaked out by this news and don't know what to say so they search their memory for anything that remotely connects to the topic. By turning the topic around so quickly, you help get them out of a jam and relieve yourself from any more talk in that vein. Anyone with a lick of social sense will recognize what you have done and hopefully learn from it. When you see them again, if they ask a very pointed ‘how are YOU?’ just answer as usual (‘I'm fine. And you?’). Play dumb, in a sense. Politely close the door on these people and hope they get the clue.
“As for the rude, disrespectful, and incredulous people: Do not tell anyone about it until (1) you are certain of their character or (2) absolutely can't avoid it. It's not a matter of shame, but of self-protection. I suspect your correspondent may be rather young--MS usually starts in young adulthood--and so are her interlocutors. Because they are young, they probably don't have much experience with illness or mortality, especially not among their peers. Therefore they are all the more likely to be incredulous. And that brings us back to number one above.
“In a new city, she may have been a bit liberal with her intimacies in an effort to make friends. She may not have much of a support system close by. This is why I would advise her to coast along on the surface with potential friends until she learns what they're made of. I would advise the same approach in the workplace. Unless the MS is apt to pose a problem there, don't mention it. If necessary, only inform the direct supervisor and HR person.
“And the best tip I have is this: talk to the nurses in her neurologist's office. There should be at least one who specializes in MS. Nurses tend to know the real day-to-day psychosocial challenges that patients go through. The younger docs are better than their predecessors, but this just isn't what they do best.
I think Virginia’s advice is spot-on. Life with a chronic illness requires ongoing navigation — and undoubtedly some course correction along the way. A bit of grace, a touch of humor, and some tolerance for other people’s uninformed errors will go a long way in helping keep you on track.
Every Thursday,Steven Petrow, the author of five etiquette books, and the forthcoming “Mind Your Digital Manners,” addresses questions about medical manners.
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