MS—it’s a family matter
When someone is newly diagnosed, the first person to connect with
the National Multiple Sclerosis
Society is often a spouse,
parent, sibling, child or close
friend. Usually, they’re seeking
information and resources for
their loved one, but they rarely
ask for help for themselves.
Devoted family members can
be pillars of strength for people
with MS—but only if they also
take care of themselves, because
MS changes things for everyone.
MS changes family plans. If
Mom isn’t feeling well today, she
may not be able to participate
in activities the way she once
did. The family may not be able
to afford the things they used
to, either, because living with
MS can be so expensive. And
long-term goals, like education
or retirement, may shift when
caregiving becomes a priority.
MS changes relationships.
I’ve heard many family members
describe the helplessness that they
feel in trying to be supportive to
a person with MS. They don’t
know what is or isn’t OK to say.
They can’t always tell how the
person with MS feels—and that
can create misunderstandings,
disappointments, frustrations. If
they don’t have a way to discuss
issues, it can have a longstanding
impact on the relationship.
the family of
Some people transform their
feelings of powerlessness over
the disease by getting involved.
Dennis Dirksen, a board member
at the Kentucky/Southeast
Indiana Chapter, whose wife and
children have MS, completed
the Challenge Walk MS—a
3-day, 50-mile walk—in
Charleston, S.C., this spring.
Connecting with others while
doing something so difficult and
meaningful was a very powerful,
therapeutic experience, he said.
But there was so much more to
it. “I was surprised at the people
who gave money to support
me in this. I never asked them
before, but this gave them an
opportunity to express their
caring and concern and love for
me and my family,” he told me.
For some family members,
staying informed about the
disease’s progression is the
most important factor. I recall
a woman in Spokane, Wash.,
whose husband had MS; she
told me that even though she’s a
nurse, his doctor wouldn’t allow
her in the exam room during his
appointments. The doctor didn’t
realize they were a team—that
they were going to get through
this together. That woman,
Jean Rose, was instrumental in
helping the Society shine a light
on the fact that the entire family
lives with this disease.
President & CEO
National MS Society
733 Third Avenue, 3rd Floor
New York, NY 10017