“not a simple fix where you call somebody and they
immediately come in and protect your rights in
the workplace and you never miss a day of work.”
For that reason, according to Barbara McKeon, the
Society’s director of Employment Programs and
Services in the New York City area, “We recommend
that people consider not disclosing unless they have
to. They might have a really good experience; their
employer might be very understanding and very
helpful. But on the other hand, it could go the other
way and there’s no way for
them to really know that.”
Goldman learned that firsthand from Keer, the federal
researcher, who became Goldman’s client after his
employer refused him permission to work at home
Although Keer ultimately won a settlement and
has been working happily for 16 years at a more
accommodating agency, he shudders at the memory
of going up against his former employer.
Much of the time,
employees disclose to their
employers when they need
some sort of accommodation
to do their job. This might
include such adjustments
as making the workplace
accessible, modifying a schedule, allowing leave time
or providing reserved, close-by parking space.
“Initially, you only need to let them know that you’re
having trouble because of a medical condition and
you need an accommodation,” Batiste explains.
“Often, the employer doesn’t ask for any more
information, and that’s the end of it.” But if you
request an accommodation, the employer is allowed
to ask for proof that you have a disability, which
usually means your diagnosis and your limitations.
Employees should know, says
JAN’s Batiste, that “they are
not 100 percent protected
just because they happen to
disclose. There may be times
when someone discloses and
an employer has a legitimate
reason to terminate them, for
example, if they cannot do
their job anymore even with
accommodation.” The Society offers an online tool
that can help a person decide if, when and how to
disclose in the workplace. Visit nationalMSsociety.
org/workplacedisclosure for more information.
Much of the time, employees
disclose their MS when
they need some sort of
accommodation to do
An employee who has visible symptoms but doesn’t
require any kind of accommodation has no legal
obligation to tell the employer. But if symptoms could
lead an employer to misconstrue their significance—
fatigue as laziness, or balance issues as substance
abuse, for example—it might be better to disclose.
Charles Goldman, a disabilities lawyer in Washington,
D.C., warns employees with MS to proceed with
caution. “I think we still live in a world where people
are afraid of the unknown, and that comes into play
when people have hidden disabilities such as MS.”
If an employee were getting ready to disclose, says
Goldman, “We would say to them, first let’s work
with someone to practice, such as someone at your
local MS chapter, so you don’t have to hire a lawyer.
You can practice what you’re going to say to whom
and how you’re going to do it.” (For help finding a
local employment program that can help you practice,
call an MS Navigator at 1-800-344-4867 or JAN at
1-800-526-7234.) He adds, “You need to get your
doctor lined up; let him [or her] know that he may be
asked for medical information. You can’t just sort of
put your toe in the water when you make disclosure.
You’ve got to be prepared.” n
Andrea Sachs is a senior reporter at Time magazine.
Diagnosed with MS in 2009, she disclosed to her employer