I’m not a professional actor, but I put on one heck of a performance at work. You see, I have MS and I am afraid of my coworkers finding out. You can say that my health is no one’s business, but let’s be realistic. In my field, normally we spend more time with coworkers than we do family, and one of our most valued character traits is curiosity. Some are gossips who cause trouble and others feel compassion. No matter the reason, though, although they can’t ask me outright, they will still try to find out.
Like any production, I have a script. When I first arrive at a client’s office, before anyone starts wondering about my cane, I casually mention I have arthritis in my hands and feet (which I do). When I use a digital recorder to help me with brain fog, they assume I have trouble holding a pen. When pain surprises me with a jolt of electricity from my foot to my knee, I bite my lip and look like I’m concentrating on the speaker. When the room begins to spin or I’m “floaty”, I stick to chairs and just point to the cane if anyone looks curious.
Cognitive issues are a struggle. I was a key manager in my field when I was diagnosed, and now I am a support worker who has to look up the steps to use basic software when my brain’s recall button isn’t working. I came to terms with that years ago. Now when something doesn’t make sense, I smile inside and mutter, “I used to be SMART!” I don’t measure success in promotions and titles anymore either, which is heresy in much of the business world. Recruiters have said my lack of ambition is undesirable and yet I’m labeled “overqualified” for the roles I would excel in. As offers for work dwindled, I wondered if I should tell them my MS relapses became less severe and occurred less frequently after I gave up my high-stress career. Instead, I accept any short-term freelance gig I can find.
Fatigue is a killer, but the energy it takes to pretend I’m fine makes it even worse. Even with medication and coffee, my body wants to curl up under my desk and sleep halfway through the day. Plus, Team Players work overtime. Team Players don’t mind attending “lunch meetings”. My heart is a team player. My body isn’t. And I don’t do anything except eat and sleep when I get home. Social activities—if any—are limited to Saturday because I have to rest up for Monday.
Every good script has a twist. My most recent short-term gig is turning into a long-term and possibly permanent opportunity. (I am SO Sally Fields: They like me! They really like me!) As jobs go, this is Oscar material all the way—great colleagues, interesting work and an environment that truly supports diversity. For example, my department planned a gathering at a restaurant several blocks away and many team members planned on hiking it. My boss ordered and paid for a vehicle for me, then joined me so I wouldn’t feel singled out. I am touched by her consideration. So perhaps the time is coming when I can be open about my MS, make a little joke about being floaty, be honest that I need to work from home because my legs aren’t working that day. This is one stage I would be glad to retire from.
As treatments continue to improve how we live with out symptoms, this will become a more common scenario. Do you feel you can be real about your MS? What about with those who determine your salary, raises, opportunities?