If there’s one thing Michael Pappano, MSW, LCSW, a social worker at Penn Medicine’s Multiple Sclerosis Center, wants people to know about employment and multiple sclerosis (MS), it’s this: They are not incompatible.
This is because while multiple sclerosis flare-ups can make work complicated—they don’t necessarily have to make it impossible.
A person’s work identity is a big part of who she is. It’s important to know how she can remain in the workforce and feel good about herself,” Michael adds.
Here’s how MS patients can cope with multiple sclerosis flare-ups when they also have a job.
Q: How can you protect your job when you have a chronic disease like multiple sclerosis?
Michael Pappano, MSW, LCSW: First, if you have MS, it’s important to know your rights in the workplace.
For instance, under the Americans with Disabilities Act (ADA), you can’t be treated differently at work just because you have MS. For example, you can't be fired or have your hours cut back.
But not all employees are covered under the ADA. These protections are available to anyone who works for more than 20 calendar weeks per year for a local or state government, or a private business with more than 15 employees. People who work for the federal government are covered as well.
So if you have MS, these protections entitle you to reasonable accommodations. All that means is that you should be able to get modifications to your current work environment so that you can satisfy your job requirements. This could be as simple as your employer getting an ergonomic keyboard for you, if you’re having trouble typing.
There's also the FMLA, which is the Family and Medical Leave Act. The FMLA allows a person to take an unpaid leave of absence for up to 12 weeks if she or one of her family members has a medical condition.
This can be intermittent or continuous leave. So during multiple sclerosis flare-ups, this might be useful.
But FMLA is only an option for people who work for companies with at least 50 employees and who live within a 75-mile radius of the company’s home base, or if they work for the government.
A person might have short- or long-term disability benefits through her employer as well. It really varies. But those are potentially options, too.
To really know your rights, talk to someone in human resources, or a representative from your union, if your company has one.
Q: Does it help to tell your coworkers that you have multiple sclerosis?
Michael: I don’t recommend that you disclose to your boss and coworkers that you have MS, even if you take time off. In fact, you’re not required to tell your boss and coworkers why you’re taking FMLA time off.
Disclosure might make your coworkers feel empathetic towards you. But it could also create opportunity for you to be singled out or even mistreated.
With the ADA and FMLA, your information is kept in a confidential file with human resources. So your boss never needs to know why you have an FMLA benefit or why you need an ergonomic keyboard. All of that information can stay quiet
An HR person or a union representative can make arrangements for you to take time off without disclosing anything to the boss directly.
Q: What if you’re having trouble keeping up with work because of your multiple sclerosis?
Michael: See if you can work from home. That could be considered a reasonable accommodation under the ADA.
For example, I counseled a woman who works with a major company and manages vendor accounts. This is something she can do from home—and she lives an hour away from work. And her computer is set up for it.
If she were to fall behind at work because of absences, working from home to stay caught up could be considered a reasonable accommodation.
Q: How can you handle questions from coworkers about why you keep taking absences?
Michael: It’s very stressful to be bombarded with questions by coworkers. To help patients with that, I’d refer them to the National Multiple Sclerosis Society. They have an employment specialist who can help with these sorts of questions and situations.
Another resource is the Job Accommodation Network, which provides some wonderful tips on how people with disabilities like MS can navigate the workplace.
Q: How can you deal with the psychological stress of knowing that when you have multiple sclerosis, you might have to retire early because of your condition?
Michael: I think the knowledge that most people living with MS continue to work is very comforting for many people. Many times, the assumption is that people with MS do not work because they are totally in wheelchairs. That’s not necessarily true.
I counsel MS patients, and if I had a dime for every time I heard “when am I going to be in a wheelchair?” I’d have enough money to find a cure for this disease. The truth is, don’t assume you’ll be in a wheelchair or totally disabled someday. The disease is different for every person.
With the disease-modifying therapy medicines that were developed in the 1980s, a lot of people became able to live with MS with very few signs. People can live with it without anyone knowing they’ve been diagnosed. And people are living significantly longer, with less disability.
I also think reaching out to others in the MS community—peers, counselors, the National Multiple Sclerosis Society, etc.—might help people feel more at ease with their condition.
At Penn, we have caring physicians, nurses, pharmacists, social workers, and other specialists who can provide support as well. We gather around the people we serve so they can enjoy the best quality of life possible.
Make an appointment at Penn’s Multiple Sclerosis Center online or by calling 800-789-7366. Penn Medicine’s Multiple Sclerosis Center has been designated a National MS Comprehensive Care Center by the National Multiple Sclerosis Society.