repeatedly. There’s no one way to handle it, but a
thoughtful plan may prevent later regrets.
All in the family
A strong support network is key for coping with
a chronic disease like MS, and for the majority of
people, the family is the linchpin of that network.
A spouse or partner, a sibling, or someone else in
the family who was at their side during the search
for a diagnosis, is often the person they tell first.
A harder call is deciding when to disclose to your
children and what to say. “Think about how you
talk with them about other complicated or confusing
subjects,” advises Dr. David Rintell, Ed.D., a
psychologist at the Partners Multiple Sclerosis
Center in Boston.
Start simple
Dr. Kalb suggests using age-appropriate language to
talk about MS. “I tell people to approach it like sex
education,” she says. “You start with simple, basic
information, and add more complex information
as your children develop the ability to understand
it.” With very young children, for example, you can
explain that MS is not like the flu or chicken pox,
and tell them they’re not going to catch it and you
can still hug and cuddle.
When discussing it with a young child, adds Dr.
Rintell, “Make it concrete; make it specific to what
is observable, and don’t go too far beyond that.” For
example, a parent could say, “Mom is having some
trouble with her legs so she doesn’t walk as well as
before. But she’s OK and can still take care of you.”
Teenagers can understand much more about the
illness. Still, he says, they should rely on their parents
or healthcare providers for information; they’re better
off not researching MS on the Internet because
they may come across unreliable or frightening
information.
With grown children, the conversation is generally
easier. Bob Sweitzer, 62, a retired transportation
executive near Denver, immediately told his kids after
he was diagnosed in 2004. “Our youngest of five was
in college at the time,” says Sweitzer. “The others were
either in the latter stages of college or early stages of
their own working careers. They were very supportive.
And for the most part, they wanted to learn more.”
Timing the disclosure is often determined by the
severity of the illness. When MS causes changes in
family routines, it’s probably a good time to discuss
what’s going on. “If parents are very worried or
depressed or anxious about all of this, their physical
symptoms may not show, but their children are
certainly picking up that something’s amiss,” says
Dr. Kalb. “When you don’t fill kids in, their
imaginations typically come up with answers that
are even scarier than reality.”
