Making employment decisions
An MS diagnosis does not have to mean kissing your career goodbye. Here’s how you can take control of the decision-making process.
by Beth Adelman
Attorney Felicia Lopez thought she had her career path mapped out. Then, in 1999, she was diagnosed with multiple sclerosis. But she didn’t put her dreams aside. Instead, she found different ways to achieve them, researching her options and making decisions that she knew would work better for her down the road. “My life is different, but it’s far from over,” she says. “That is a huge lesson that I relearn every day.”
Indeed, “Having MS doesn’t mean you have to give up doing work that you love,” says Doris Lill, client education manager for the National MS Society. “Most people have time after a diagnosis to do research and plan their future,” Lill says. Being proactive with that process helps people add a measure of control over an unpredictable disease.
Start with now
The first step to managing your work life with MS is to evaluate what you need now. Though your needs may change over time, you and your healthcare team can discuss how MS may be affecting your work currently, and can come up with practical ways to manage symptoms such as fatigue, or cognitive or vision challenges.
For example, you may be able to work around fatigue by tackling your most demanding tasks first thing in the morning. For other symptoms, simple strategies may include using a larger font on your computer, getting a brighter lamp or using a different kind of filing system. Ergonomic office equipment such as desk chairs, keyboards and arm supports may also help.
In some cases, however, you may need your employer to make certain job accommodations, such as providing a dedicated parking space closer to your building, a desk closer to an elevator or bathroom, or modifying your work schedule to accommodate rest breaks.
After you’ve addressed today’s challenges, you can begin thinking about what you might need in the future. Dorra Blacker, clinical supervisor for vocational rehabilitation at New York University Langone Medical Center’s Rusk Rehabilitation in New York, points out that MS symptoms can come and go, so it’s important to think about which symptoms you can work around in the short term and which will require long-term accommodations.
The Americans with Disabilities Act requires employers to offer reasonable job accommodations—although the employer determines what constitutes “reasonable.” Keep in mind that if you request accommodations, you will need to disclose information about your MS to your employer. Otherwise, the decision to disclose is up to you.
Read your company’s employee handbook to learn its policies on medical leave, flexible hours and job performance, advises Kris Graham, employment manager at the Society’s Information Resource Center. And be prepared to follow those policies or request modifications to them, Graham adds.
But as others have discovered, if your employer’s policies don’t meet your needs, you can also consider exploring other avenues.
Lopez did exactly that once she realized she had options. After her diagnosis, she decided to move to a metropolitan area with public transportation in case her mobility became limited. She also prioritized working for an organization with flexible hours and policies. She can work from home if she is having a flare-up and also has time during business hours for medical appointments.
Lopez recommends that people with MS research the policies and corporate culture of any potential employer. Check the company’s website as well as sites like Glassdoor, where current and former employees dish on what it’s like to work at specific places. You can also search LinkedIn to see if anyone you know works for the company you’re targeting. Employment experts advise that you not discuss your MS during a job interview unless you know you will need accommodations right from the start, but you can ask about sick leave, flex time and work-from-home options once you have an offer in hand.
Blacker suggests people with MS also think outside the box. “Ask yourself what skills you have that would enable you to do your job differently or to do a different job,” she says. “Have a Plan B and also a Plan C.” Every state has a vocational rehabilitation office that can help people explore their options.
Deciding not to work
Even if you decide to leave work, it’s important for you to feel that you have control over that decision. Lauren Strober, PhD, a senior research scientist at the Kessler Foundation in West Orange, New Jersey, says people who leave work to do something they want, such as spend more time with their families, or do volunteer or advocacy work, fare better emotionally than those who stop working because they feel defeated.
Jackee Jackson, a social worker and disability advocate in South Plainfield, New Jersey, who is also pursuing a doctorate of ministry degree, has engaged in advocacy on the local, state and national level. She was diagnosed with MS in 1997 and retired early because she could no longer perform her job duties. But that doesn’t mean she isn’t still working. “The type of work that I do now consists of disability consultant work, community service work, volunteer work, working in the church and academic work,” she says. “Although they are not 9-to-5 jobs, it is work.”
And, as Lopez says, “Never underestimate the value of feeling satisfied when there’s a role for you to play.”
Beth Adelman is a writer and editor in Brooklyn, New York.
To read more about disclosing your MS on the job, visit nationalMSsociety.org/disclosure.