Disclosing Multiple Sclerosis: Whether and When to Tell Your Employer You Have MS

By Thomas Stewart, M.S., J.D., PA-C | MS Awareness Month is a chance to bring multiple sclerosis to the forefront, to help advocate for people and families living with MS every day, and to educate the public. This March, we’ve devoted the month to helping foster greater understanding of MS in our community.

MS is often an “invisible” disease. So many common symptoms can be truly life-altering to those living with them, but not always apparent to the outside world. We’ve created this page of basic MS information for patients and families living with MS, to help them share the facts about MS with loved ones, friends, co-workers, neighbors, and anyone else who may not have a great understanding of what it means to live with MS.

There is no one-size-fits all answer here. In part, this is because emotional factors play a role in the decision. Explaining the origins of a gait abnormality, may serve to end speculation and make working life more comfortable. For example, one client, a dental hygienist with MS, became unable to work with patients because of a tremor. Accordingly, she changed her job and became a teacher instead, without any clinical responsibilities. She told me that on the first day of every class, she explained to her students, “Let me get this out of the way: I am not drunk; I have MS.” She believed that this helped build a trusting rapport with students and avoided distracting speculation as to why she was clearly unsteady, and increased her own comfort level. This strategy worked in her case.

In many other cases, however, such a disclosure might be ill-advised. Most people know very little about MS. Employers and co-workers may even think that it is a terminal condition. Many don’t know that with good treatment, functional loss over time may be minimal or even zero. Uninformed people in your work environment, due to prejudice, may begin to view you as less competent. You may even miss promotions--or worse--based on this prejudice. Though this may be illegal, you may find it hard to prove. In any case, what you want are strong, supportive relationships with co-workers and supervisors, not a potential legal claim.

Therefore, in my opinion, the better course is not to disclose that you have multiple sclerosis to your employer or co-workers (except, perhaps, to trusted friends who will not disclose to others, especially leadership).

Similarly, for the reasons described above, e.g., prejudice, I do not think it is a good idea to disclose that you have MS at a job interview.

When Disclosure IS a Good Idea

On the other hand, there are times when disclosure is a good idea, even necessary, to continue employment. Usually, such a disclosure becomes critical when MS related symptoms and limitations begin to interfere with your ability to do your work, whether your employer has noticed or not. But it is especially critical after a bad review at work. Such a disclosure at this point may afford important legal protections that may significantly extend your ability to continue in the workplace.

For example, fatigue may become so severe as to begin to interfere with job demands. There are multiple possible ways to handle this problem by seeking reasonable accommodations and the Americans with Disabilities Act (ADA), a federal law for larger employers (generally greater than 15 employees) or, for smaller employers under state laws, which, in most states will provide protection for workers who work for smaller employers.

If you notify your employer about the fact that you have MS, you should do so in writing and request a discussion about whether accommodations may be available that might help you stay in your job. Your employer must begin a conversation with you, technically they must “begin an iterative process” with you to identify reasonable accommodations that may help you keep your job. Examples of possible accommodations that might help might include:

  • a more flexible work schedule, 
  • working from home one day per week,
  • job restructuring, or
  • the use of a wheelchair. 

You are entitled to a reasonable accommodation unless it places an undue burden on your employer. Whether these potential accommodations create an undue hardship will be determined on a case by case basis. But the conversation may identify some solutions that both the employer and the employee consider to be reasonable.

Occasional time off may become a critical strategy for staying in the workforce. For larger employers (those with 50 or more employees) then the protections of the Family Medical Leave Act (FMLA) are critical. This will provide up to twelve weeks unpaid leave over the course of a twelve-month period. Without the FMLA, most employers won’t tolerate even once absence per month before firing someone. (Note that there are also state analogs to the FMLA, which may protect employees at smaller firms.)

To receive the protections of the ADA or the FMLA, notifying your employer about having MS is required. Generally, at least in my opinion, it is when seeking these protections that you should disclose your MS to your employer, but not before.

It will be important to work with your clinical team as you go seek the protections of either the FMLA or the ADA. Ultimately, they will need to substantiate your diagnosis and the need for accommodations. Ideally, you should discuss this with your clinical team prior to notifying your employer to ensure that your clinicians will support what you are seeking to accomplish. n

Thomas Stewart directs the RMMSC’s Disability Law Program. For a free consultation, please contact RMMSC’s Disability Law Clinic at (720) 301-9708.

References and Additional Reading:

https://www.mscenter.org/images/stories/PDF/InforMSSummer2016.pdf

https://www.nationalmssociety.org/Living-Well-With-MS/Work-and-Home/Employment/Disclosure-Decisions/Should-I-tell