The
Disclosure
Dilemma by Andrea Sachs
Deciding if, when, how and who
to tell about your MS is a big deal.
K aren Ball, the White House correspondent for the New York Daily News, had just returned home after two grueling trips
abroad with the president. It was the summer of 1995
and, as usual, the capital was sweltering. But a few
weeks later, Ball, then 33, found she couldn’t walk in
the heat without falling down. After bouncing from
one doctor’s office to another, she finally had an MRI,
and was diagnosed with multiple sclerosis.
and how—to have The Discussion: Who will they
tell and how much will they say? The choices that
people with MS make are myriad. “Some people are
just an open book; some will not tell a single family
member,” says Tova Epstein, LCSW, a social worker
at the Corinne Goldsmith Dickinson Center for
Multiple Sclerosis at Mount Sinai Medical Center
in New York City.
ILLUSTRATIONS BY KATE MILLER
Ball knew next to nothing about MS, but she knew
well that the press corps in Washington, D.C., thrived
on gossip. “In that very insulated world in which I
lived and worked, it would travel like wildfire once
it became known,” recalls Ball, now a freelance writer
in Kansas City. So she immediately devised a plan.
“I gave a disclosure statement to an assistant secretary
with the White House press office, and I spun it
strong. I was very careful in the way I worded [my
disclosure]: ‘It’s not a big deal. They think I have a
mild case. I’m going to be fine.’”
Take your time
Those who have found the answer to their health
puzzle after years of unexplained symptoms may
have a strong impulse to tell the world. But since
disclosure, once made, is irreversible, many experts
advise thinking it over first. Says Rosalind Kalb, PhD,
a clinical psychologist and vice president, clinical
care, at the National MS Society, “We encourage
people, if they can, to take a little time to sit with
the information themselves and make a thoughtful,
educated decision about who needs to know.”
A personal decision
While not everyone with MS needs to be quite as
strategic as Ball was, many still must decide when—
People often live in more than one realm: family,
friends, dating and work. To the degree that those
worlds are separate, people with MS may find
themselves faced with the issue of disclosure
