Informing Employers of MS Diagnosis

Informing Employers of MS Diagnosis

I was thinking this weekend about when I worked. I’ve read a few MS blogs where people discussed when, if ever, do they disclose their disease to their employer? If you are new to my blog, I was diagnosed with multiple sclerosis when I was 26. I’m 50 years old now. I became disabled when I was 44. That left a lot of years when I worked. I held my last position for 13 years with the same company but I worked at 3 different locations within the company. I dealt with all the financial of a nursing home. I ended up doing Medicaid application, insurance billing, collections, Medicare and Medicaid billing, as well working with outside lawyers and our companies lawyers. I had many people to answer to, therefore I had many bosses. As far as my multiple sclerosis diagnosis, everyone knew.

When I interviewed for a new job, I never disclosed my diagnosis. I never even discussed it when I moved laterally between locations of my last position. I would eventually give out the information as a matter of fact in a conversation somewhere later down the line. Usually I told after I tripped over the invisible thing on the floor that always seemed to come out of nowhere. In those early days, you really wouldn’t know anything was really wrong unless you really knew me. My symptoms were mostly invisible unless I was too tired or it was hot. You might than see a slight limp. I did have those out of nowhere falls periodically. It was usually those moments when I’d nonchalantly say, “I’m ok, I have MS”. That is how my employers found out. I never hid it and once known I was completely transparent. I even had steroid IV treatments running while I worked in my office. My bosses knew my disease and disability had no impact on my job. I worked through relapses, steroid withdrawals, and fatigue. I used my sick days to sleep all day. They didn’t really help the physical fatigue, but they were important to keep me going mentally, especially towards the end.

My major relapse, that really disabled me, happened in 2014. By this point, there was no way to hide my disease anymore. I now needed a walker to get around. It wasn’t just my employers and peers who knew, the patients and families knew. Everyone I dealt with knew. That was a little more difficult. I found myself explaining I had MS all the time. People don’t expect a 44 year old collecting money to look like someone who could be in the nursing home getting rehab. I started working from home a few days in the final year. The company did try to tell me I couldn’t do my job from home after a few months like that. Since I was still number 1 in my collections within the company and I was still 100% on top of every case I had, that was bullshit. I got a family lawyer who helped draft a letter to my employers. They knew that my request was a reasonable accommodation according to the disability laws and I was able to continue working part from home part from the facility. My neurologist and I decided it was enough at the end of January 2016. I was taking more and more medication just to get through the day. It just got to be too much.

The decision to tell or not tell your employer is a call that is a personal decision. I never denied having MS to most people. There was always a time where I had a trip or fall out of nowhere that caused me to explain. I was never embarrassed by having multiple sclerosis. I was already klutz. Having MS brought it to a whole new level. I did use it in the early days to explain my clumsiness. It was a way for me to make light of my disease. I can’t do that anymore 😂. I hope that this helps for anyone who is unsure about disclosing the information. You are protected by disability laws. My advice is don’t let multiple sclerosis be an albatross around your neck. There is no reason to not show your a strong warrior.

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