Living
The delicate balance of talking about MS
by Katherine Shaw
When I bump into a wall and my boyfriend says nothing,
I move past it without emotion,
and go on to other things. But
then there are times when he
gives me “the look” or, heaven
forbid, makes a concerned
comment like, “Are you OK?”
or “I’m really worried.” Then,
I’m a mess. Do I have thick
skin? When it comes to my
roller-coastering MS symptoms,
absolutely not.
But that doesn’t mean the
comments aren’t warranted. For
heaven’s sake, if I’m rebounding
off walls, I’m worried! Still,
when it’s time to bring up
a difficult topic to someone
who has MS—anything from
suggesting a walking aid to
considering long-term care—
finding that delicate balance in
communication is critical. The
strategies will be different for
everyone, and it’s important to
let your family and friends know
what works for you. Here’s what
I’ve told my family helps me feel
supported.
TOM GRILL/GLOW
be doing great!” Or when I’ve
done what feels like the 5,000th
repetition of my physical
therapy exercise, and my
boyfriend calls out, “I’m proud
of you!” Hearing these things is
incredibly motivating, and I’ve
learned to savor them.
1. Celebrate the small things.
MS typically doesn’t get better
with time, and my desire to
remain as functional as possible
for as long as possible is huge.
So I’m delighted when someone
says, sincerely, “You seem to
2. Know your audience. If
I’m freaking out with my best
friend over my latest symptom
development, I need her to
be my rock. I want to cry and
whine and shriek that it isn’t
fair—so I desperately need her
to minimize her own emotions
and help me get through mine.
Other people with MS may
crave a greater emotional display
from their friends; there’s no
right or wrong. Thankfully my
friend understands what I need,
and I know I can count on her.
Think about who your friends
are. Some will be invaluable
at helping you brainstorm
practical solutions, while others
have great shoulders to cry on.
Let each know what you need
from them.
3. Watch for a reaction. While
my mom may want to discuss an
issue that she sees as front-and-center, today may not be the
