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Things you might want to avoid                                                     “Are they
saying to someone with MS                                                           sure you
by Maxine Young
                                                                                  have MS?”
Most people who say these             cinched tightly around your
things don’t mean to cause hurt       torso), cognitive fog, or fatigue
                                      beyond your wildest dreams.            That question can
feelings. With that in mind, the
                                         Please feel free to tell us how     toss a wrench into
author offers a guide for friends     good we look, but not in spite of      the whole acceptance process.
and family members.                   our MS. We look good—and we            All it takes is a pinch of doubt
                                      also happen to have MS.                to throw us off track. We have

Iwas diagnosed with MS two
 years ago. Of course I don’t
think that makes me an expert,
                                                                             a right to question our doc-
                                                                             tors if we aren’t sure or need
                                                                             further explanations, but this
but when a family member                “Oh, I know                          question is almost like ask-
mentioned an old wives’ tale                                                 ing us to prove what we are
about the disease and tried to            someone                            experiencing.
convince me that it was true, I                                                  Why not ask how we are
thought someone really should           who has MS!”                         feeling to start a discussion? Or
create a guide.                                                              what helps relieve our discom-
                                                                             forts? Or if we need any help?
                                      As I tell more people,                 (But only if it’s really meant.)

    “But you look                     many immediately
                                      remember someone else they             Thank you for caring about us!

      so good.”                       know—or knew. What comes
                                      next depends on prior experi-
                                                                             The people who ask these ques-
                                                                             tions are usually coming from a
                                      ence. I’ve received a super-           place of concern, even love. I’m
                                      cheerful “Oh, my boss’s wife had       so thankful that not everyone
            To be honest, I’m         that. She’d be sick sometimes,         runs away or is afraid to open
            not sure what feelings    but get better right away.” I’ve       up a dialog. Those reactions are
this is supposed to evoke, but the    also received a shocked silence,       so much worse. Advances in MS
speaker, perhaps unknowingly,         followed by “My sister had MS.         research to find a cure are hap-
has just insinuated:                  She didn’t do well.”                   pening every day. When a cure
   1) People who look good                Please remember MS is not a        is found, we can all celebrate
aren’t supposed to have an illness.   one-size-fits-all disease. We’d like   together.
   2) Suffering is always visible.    you to listen and understand
   Just because someone looks as      that each of us has symptoms           What is the worst thing
though they’re doing extremely        that are unique to us. You don’t       someone has said to you?
well doesn’t mean that they           have to keep your prior experi-        
aren’t experiencing numbness all      ences with MS a secret. Just
over their body, the MS “hug”         understand that everyone is            Maxine Young is a good-looking
(described as having a large belt     different.                             freelance writer.                                                      Momentum • Winter.2009–10    37

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