Work & Multiple Sclerosis
Experts describe strategies that help multiple sclerosis patients cope with symptoms of the disease.
How to handle workplace issues when you have
Elissa Levy, a 37-year-old with secondary progressive multiple sclerosis
(MS), is living proof of the unpredictability of this progressive neurological
disease that affects the central nervous system.
Soon after being diagnosed in January 2002, her physical status plummeted
quickly. The former fitness buff who regularly skied and jogged describes the
overwhelming MS-induced fatigue that plagued her almost daily. "Sometimes
my eyes hurt too much to watch TV," Levy tells WebMD.
During that period, she traded her running shoes for a cane, broke off a
relationship with someone she had once considered marrying, and relinquished a
long-sought full-time position as director of a new charter school, taking up
part-time work instead.
Then, just as quickly as the symptoms struck, they abated. "I had tried
all the drugs on the market for MS. As a last resort, I even did
chemotherapy." She found relief through an experimental drug (not yet
approved by the FDA for MS).
Now, for the second time in three years, she's had to evaluate her future.
"I still dream about going for a jog. But now I can walk home from a movie
20 blocks, instead of taking a cab," Levy says. She is back to work full
time, sometimes pulling 12-hour days. And she's re-established a relationship
with her old boyfriend.
Through the ups and downs of the disease, people with MS must go on with
their lives. Very often, that means making long-range decisions about how to
live, from employment to recreation -- and being open to re-evaluating them as
needed. In addition to these "big picture" decisions, practicing
seemingly small lifestyle strategies can make the disease more manageable.
Working With MS
Like many others with MS, Levy was forced to make decisions about her
professional life. Among the questions she faced: Do I tell my employer and, if
so, when? Can I continue working? What accommodations will I need?
New laws, ever-increasing resources, and improved attitudes are making these
decisions easier. Currently, 43% of adults who have had MS for 12 years retain
employment, according to an ongoing nationwide study sponsored by the National
Multiple Sclerosis Society (NMSS).
But some experts believe that percentage could be higher. "Employers may
have preconceived ideas about what a person with disabilities can do. It takes
time to change attitudinal barriers. There's still work to be done," says
Steve Nissen, director of employment programs at the NMSS.
That's why, for now, it's generally up to the employee with MS to initiate
any discussions involving disclosure or accommodation requests in the
Nissen considers disclosure -- the whens, whos, and hows of it -- one of the
most difficult aspects of working with MS, or any disability.
Before disclosing, Nissen suggests the following: "Ask yourself: 'What's
going on to make you think it's time to disclose? Are you having new or
different symptoms that's posing a challenge at work? Are you having trouble
meeting deadlines, or missing time?'"