Multiple sclerosis (MS) often strikes between the ages of 20 and 40 -- during your prime working years. And more often than not, the disease affects women.
Over 70 percent of women with MS who were surveyed said they feared their condition would affect their ability to work. More than 60 percent said they'd tried to hide their symptoms at work.
That's what Trish Palmer did when she was diagnosed with MS in 2013. She told her manager at the Columbus, OH, hospital where she worked, but she didn't disclose her condition to co-workers at first.
"It felt like something I didn't want to make a big announcement about," she says. "I was pretty cautious about what people would think of me."
When to Make the Reveal
You're not required to tell your employer about your condition, and it could be in your best interest to keep quiet. "It's my view that they shouldn't disclose they have MS until they begin to need protection in the workforce from the FMLA [Family and Medical Leave Act] or ADA [Americans with Disabilities Act]," says Thomas Stewart, JD, a social security disability attorney and licensed physician assistant.
The FMLA lets you take up to 12 weeks of unpaid time off each year to manage the symptoms of your condition. The ADA requires companies with 15 or more employees to make accommodations that help people with disabilities do their job.
Often some challenge in the workplace will trigger the need to reveal your MS. "Maybe it's that traveling becomes too hard," says Stewart, who also sees patients in the Department of Neurology at the University of Colorado Anschutz Medical Campus. "Then you'll need to have a discussion with your employer about your limitations."
How Much to Tell
You can reveal as much, or as little, as you want at work. Saying "I have a medical condition" might be enough. But a full disclosure of your MS and what it means gives you a chance to ask for what you need.
Being more open about your condition can also be helpful if your co-workers and manager aren't familiar with MS. Even though she works in health care, Palmer found that her reveal was sometimes met with confusion. People she told either didn't know anything about MS or would say things like, "My uncle has it and he's in a wheelchair."
"You have to meet people where they are and where their level of understanding is about it," she says. "People have tons of questions."
Asking for Accommodations
Under the ADA, you have the right to ask your employer for "reasonable accommodations." That means you can still do the basic functions of your job, but you need some help.
"If four times a year you're expected to travel to meet a client on the other side of the country, it would probably be considered a reasonable accommodation to have local clients instead," Stewart says. But if your job is to drive a bus and you can no longer drive, your company may not have to accommodate you because that's considered an essential function.
Examples of accommodations you might ask for include a more ergonomic workspace, extra breaks during the day, or a change in your work schedule. Or you might want to reduce your hours from 40 to 30 a week. "They would make less money, but that might allow them to stay in the workforce longer," Stewart says.
If you do want to cut your hours, he advises looking into your company's disability insurance policy. "Look to see if there is a partial disability provision that would allow you to work fewer hours and get paid 60 percent for the hours you don't work. And be careful to determine whether you will be able to keep other benefits [such as health insurance] if you do reduce your hours," he suggests.
Will You Still Be Able to Work?
Being diagnosed with a condition that causes movement issues, fatigue, and mental changes can make you fear that you may not be able to continue working at all. "I do a lot of critical thinking and make a lot of decisions on the fly," Palmer says. "I worried, am I going to have a cognitive processing delay, and is that going to affect my ability to care for people?"
Those fears are well founded. In one study, more than half of people with MS were unable to keep working. Making small changes or a big switch could help you stay on the job.
A stressful 40-hour-a-week job ultimately wasn't a good fit for Palmer. She left the hospital to become a travel nurse. "I still work full-time, but every day that I'm off is my time. I can rest if I need to rest," she says. "My stress level has gone down significantly."
Living with MS for several years and changing jobs have improved her state of mind. "In the beginning, I was very anxious all the time about what was going to happen and what, if any, disabilities I was going to have," she adds. "At the moment, I'm low stress and I'm not anxious about that, but it took a long time to get to this point."
Palmer says knowing her rights and working closely with her doctor to manage her condition have helped. She's even found a silver lining to her condition. "Honestly, if it weren't for the MS, I'm not sure I would have taken this job and had all the crazy, fun adventures I've had," she says.
Photo Credit: SDI Productions / Getty Images
ADA National Network: "Reasonable Accommodations in the Workplace."
BMC Neurology: "The [email protected] study: a 3-year prospective observational study on factors involved with work participation in patients with relapsing-remitting multiple sclerosis."
Johns Hopkins Medicine: "Multiple Sclerosis: Why Are Women More at Risk?"
Mayo Clinic: "Multiple sclerosis."
National MS Society: "How Much Should I Tell?" "Women and MS, National Report Documents How Women with Multiple Sclerosis View Work & Family."
Thomas Stewart, JD, PA-C, social security disability attorney; licensed physician assistant; Department of Neurology, University of Colorado Anschutz Medical Campus.
Trish Palmer, patient. [She's living in Portland, OR right now, but she moves every few months for her job]
U.S. Department of Labor: "Family and Medical Leave Act."
U.S. Equal Employment Opportunity Commission: "Fact Sheet: Disability Discrimination."