As I prepared to tell my employer that I have relapsing remitting multiple sclerosis, I worried about what to expect.
Maybe I’d get a shocked look from the administrator who oversees the department where I teach part-time. Or maybe I’d be quietly phased out, informed that future teaching opportunities have dried up.
This “big reveal” would be, according to multiple sclerosis advocates, a risky move.
In its article “Should I Tell,” the National MS Society advises: “Some people have misconceptions about MS and prejudices. Despite your best efforts, they may react negatively toward you, incorrectly viewing you as someone less competent or less able to handle stress.”
While the society acknowledged that some people might feel better being honest with those at work about what they’re experiencing, it suggested being judicious. “You could be held back from promotions following disclosure but find it difficult to prove this was due to your MS,” it warned.
Most people don’t have a firm understanding of multiple sclerosis. It attacks the protective coating around nerves in the brain and spinal cord. That damage interferes with and interrupts the communication between the brain and spinal cord and the rest of the body, like a wiring error that causes erroneous signals. The symptoms an individual with MS experiences depends on which nerves suffer damage.
I was diagnosed with a mild form of multiple sclerosis called relapsing remitting MS in July 2014. My symptoms now range from fatigue, numbness, migraines, and nocturnal leg spasms to trouble ascending stairs and sensitivity to heat, which causes me to become light-headed and nauseous and for my legs to quickly become weak.
A year after my diagnosis, I applied for a part-time job teaching at a university. I did not mention my MS during the interview. The only time I hesitated about my decision to keep quiet about my illness was when I needed to complete a form which asked if I have or have ever had any of 18 ailments listed, including cancer, schizophrenia, PTSD, epilepsy and multiple sclerosis. While the document described disclosure of this information as “voluntary” and said, “any answer you give will be kept private and will not be used against you in any way” (you could answer “yes,” “no,” or “I’d prefer not to answer” — the option I took), it was hard not to be worried after the admonitions I’d read in online MS patient forums by people who believe they’ve been discriminated against after such revelations.
To be sure, the Americans with Disabilities Act forbids discrimination against those with disabilities — including MS-related disabilities — and empowers employees to request work accommodations. When you’re a contract employee, however, you’re vulnerable no matter how many strong evaluations you’ve received.
In the question-and-answer section of the Equal Employment Opportunity Commission’s page about the Americans with Disabilities Act, the response to a question about whether an employee should disclose a disability to an employer said, “If you think you will need a reasonable accommodation in order to … perform essential job functions, you should inform the employer that an accommodation will be needed.”
Since I didn’t require any accommodations, I didn’t think I needed to mention my MS. So I didn’t — and I got the job.
After 10 semesters, I’d be lying if I said I haven’t experienced any MS-related challenges on the job. Sometimes the classrooms in which I teach get hot and stuffy, which can trigger my heat sensitivity. I wear thin layers — lots of sleeveless shirts and dresses — and carry ice packs or cold drinks which I press into the palms of my hands or against my face and neck to cool me off.
There have been times when my MS has made grading papers difficult. After talking it over with a neurologist, I’ve developed techniques that help me successfully grade those papers, including getting ample quality sleep and stopping when my focus wanes. Regardless of the issues I’ve had, I’ve always completed my work on time.
I’ve taught hundreds of students without feeling compelled to discuss my multiple sclerosis at work, although I have been publicly writing about it. It wasn’t until I decided to write a memoir about my life-altering diagnosis that I decided I needed to personally inform the department’s administrator. I wanted her to hear it from me.
Seemingly stunned after I shared my news, she said in a low voice, “I had no idea.”
I told her my symptoms are mostly mild — with the exception of the heat sensitivity and stair climbing — and that I’ve had the disease since I was hired nearly five years ago. A few weeks afterward, I was again offered the opportunity to teach classes in the upcoming semester. My revelation had not been an epic mistake.
As I breathed a sigh of relief, my thoughts shifted to actress Jamie-Lynn Sigler who played Meadow Soprano on HBO’s “The Sopranos.” In a 2019 essay for the website Shondaland, Sigler said had she kept her MS secret for 15 years, adding, “I struggled silently and ‘covered’ it up all the time.”
In the aftermath of her health announcement, Sigler said she has faced a dearth of acting opportunities. It has “definitely gotten super quiet for me since I came public with my MS,” she wrote.
My story — so far — has a happy ending, but I’m painfully aware that many others’ stories don’t. I’d very much appreciate hearing your story, good or bad, via the form below about telling an employer you have a chronic disease.
Meredith O’Brien is a teacher and the author of Uncomfortably Numb: A Memoir (Wyatt-MacKenzie Publishing, March 2020).