the Cleveland Clinic, agreed.
“Kids are very attentive to what’s
going on in the family,” she said.
Children observe changes in the
household—a period of symptom flare-up or more doctor
visits. As children accumulate
and digest information, questions naturally arise.
“There’s an evolution in
childhood knowledge,” Dr.
Miller explained. “As they grow
up and become aware, they
develop an understanding of
what MS means within the
context of the family.”
Building a story in grays It’s important to tell chil- dren what you know and what you don’t. While it’s far easier to talk in black and white—look both ways before crossing, say thank you—an MS diagnosis is anything but hat. Will Dad’s symptoms remain barely detectable or will the disease progress rapidly? Will he lose his job? Will we
have to move?
“Discussing gray areas is
tough, but necessary,” Dr. Miller
said. It’s OK to explain that MS
can be very different for different people, and that you aren’t
sure how it will impact you or
the family. With MS, things
Ongoing and open communication is critical. All questions
should be acknowledged and
“Kids can adapt if they are
allowed to be a part of the
explained promptly. If children
don’t hear anything, they’re very
likely to make something up,
and that can be worse than the
reality. As one father put it, “I’d
rather they hear it from me than
from any other source.”
“Assure your children that
you will always answer any of
their questions openly and hon-
estly,” Dr. Miller advised.
It’s all in the delivery
While dealing with MS may feel
like it’s all about you, the conver-
sation with your children should
be all about them. In Dr. Miller’s
experience, children have three
very consistent and universal ques-
tions: “Did I cause this?” “Will
you die?” and “Will I get it?”
Plan your communications,
managing both time and place.
When issues arise, tell your
children that it is absolutely not
their fault, that the likelihood
is low that you will die from
this and that MS is not catch-
ing. They should know that
there are treatment choices,
and that you are doing
everything you can to help
“When my children
were young, I never told
them I had a disease
because kids think dis-
ease is like cooties,” said
Florida mother Tammy.
“Instead, I told them I had
“It helps to be reassur-
ing,” Dr. Miller agreed.