Disclosing MS On the Job: Why I Did, and Why I Didn't
Last updated: February 2023
The question regarding disclosure of your MS at your workplace is really a lot more complicated than simply deciding to ‘fess up.
A little background
I was diagnosed with MS two weeks before I completed training to become a sleep technologist. When I applied for, and was offered, my first job, I wondered: Who should I tell? Anyone?
Obviously, my goal upon finishing the program and getting certified was to get a job. That would require me to sit through medical board exams as soon as possible upon graduation. A job already awaited me on the other side of that milestone. I just needed to interview for it.
But I was still learning how to deal with my new diagnosis while managing a job requiring me to work 12-hour overnight shifts. Would I be able to handle all this?
Here’s the dilemma
On the one hand, MS is unpredictable. I originally saw the doctor because I went through a short period when I was unable to read (alexia, a form of aphasia).1 That’s not exactly good news when reading is part of most job descriptions!
On the other hand, I was fatigued but functional. I’d been given a good prognosis. I’ve probably had MS since age 10. At age 47, my disease course suggested slow progression without treatment. With treatment, serious progression seemed even less likely. (True to form, I’m still in remission.)
The risks of disclosing my MS at work
Would disclosing my MS risk my job prospects? Would failing to disclose leave me helpless during an unexpected MS flare? What were my legal options?
While the Americans with Disabilities Act (ADA) prohibits workplace discrimination against people with MS, there are no guarantees it will be enforced.2
Meanwhile, the job market remains an unfriendly place. Many who need job-specific accommodations fear stigma and bullying if they disclose, often hiding their conditions (like I did) out of self-protection.
What I did, and did not, do
- I interviewed for the job (literally the same day I started Tecfidera). I didn’t disclose my condition at that time.
- I was offered — and accepted — the job.
- Normal onboarding through the hospital human resources (HR) department meant I faced reams of paperwork included questions about physical capacity to do the work and medical conditions for which I may need accommodations. This is when and where I disclosed my condition.
- I started my new job and sat for — and passed! — my boards over the next two weeks.
- I didn’t disclose my condition to anyone in the lab until months after I finally left the overnight shift for more sustainable work.
Why I did—and didn’t—disclose
I give 100 percent full credit to the Job Accommodation Network (JAN) for helping me navigate these difficult waters.3
I highly recommend you search their website for ample resources to answer questions regarding accommodation if you find yourself in the same pickle.
For more than 35 years, JAN has provided free, confidential advice about illness and disability employment issues and workplace accommodation to employers and people with disabilities and their families. Services include one-on-one consultation about all aspects of workplace accommodations. They work with both employers and employees to ensure the ADA protects everyone involved.3
What should you do?
It turns out there’s not just one right (or wrong) approach to disclosing your MS at your workplace. A lot of factors play into this decision. Here are two big ones.
Is yours a new job or an existing job?
I learned through JAN that it’s better to avoid disclosure during the interview or before the job offer has been given and accepted. Once accepted, they cannot legally let you go based on your medical condition, even if you disclose to HR. HR, by virtue of the ADA, must keep your condition private.
By disclosing at the time of hire, it also secured my future right to ask for, and receive, accommodations.
If your MS diagnosis came after you started work, the rules may be different. You’re best off reaching out to JAN (I’m not a lawyer) to determine how you can protect your job and acquire necessary accommodations.
Does your employer have a formal HR department?
The paperwork and processes I went through showed the hospital HR department to be extremely adherent to ADA regulations regarding workplace privacy and accommodations.
However, you might work for a very small company with no HR department, just an HR manager. Your need for accommodations must go through this person.
The ADA outlines specific regulations for small businesses, but I’m no expert: reach out to JAN to discover your best approach to disclosure in a way that protects you.
Ultimately, it’s up to you to decide if and when you disclose, based on your comfort level. But make sure you know your legal rights, to be safe.
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