Leading a double life with a MS diagnosis

Last updated: July 2015

Living with an MS diagnosis is challenging to say the least. We have to deal with a variety of symptoms, make life changes and slow down the progression of the disease through intense drug therapy. Coming out to friends, family, colleagues and others is also challenging. It can be intimidating, scary and down right stressful (like we MSers need any additional stress…).

For me, coming out to my friends and family was and is easy. I’m lucky. Everyone is very understanding and the best part is no one treats me any differently. This is what I want. Life goes on and so do I; my loved ones know this about me.

Coming out with my diagnosis to my colleagues is an entirely different story. Except for the boss man and one trusted friend, I have not revealed my health status at the office. Why? I do not want to be evaluated based on my health but rather the work that I do. So, I work incognito, like a double agent. During the day I live as a business professional and at night I live as someone with MS. My mission? No one at work must know that I live with MS and I cannot blow my cover. I know, I know. Ridiculous. I believe I have them fooled yet it’s beginning to get exhausting being a secret agent.

First, the discrete phone calls are getting harder and harder to make. You know these calls right? The ones we place to our neurologists, the MRI scheduler, the infusion room, the pharmaceutical support office, the billing office (that MRI costs how much?!), etc. If I place these calls from my desk in the cubicle farm, my colleagues will surely overhear and (gasp!) my cover will be blown. So, like a good agent, when I need to call in I quietly grab my cell and walk around the office, looking for a private place to duck into so I can freely convo about The Secret. Either my office mates think I am a very, very private person or think I’m chatting it up with an employment office looking for a new job. This can only mean one thing: I am a very good agent indeed. I have them fooled.

Sometimes my physical symptoms make it difficult to conduct my spy work and I risk exposing the mission. This can be very difficult to cover up. For example, one afternoon, during a meeting with about ten analysts and statisticians, an episode with double vision came up for me. I told myself, as I began seeing about twenty calculators spin around the conference room, “Just blend in, like any good spy, while they talk about their findings and insights and pray that they do not ask you any direct questions.” And I did. I just sat there, calmly, and listened to everyone, nodding my head once in a while in agreement as I waited for the spinning to stop. “Whew!” It finally did pass, twenty calculators reduced to ten, and I managed not to attract any attention

Alas my cover remains intact.

Sometimes when I am walking around the office with spreadsheets in my arms, I lose my balance, bounce off a couple of cube walls and trip a bit. To cover this up, I start into a slow jog, as if telling my colleagues, “Yeah. I meant to do that. I’m in a hurry because I’ve just been called into the EVP’s office to explain those numbers and I’m feeling a bit frazzled about the whole thing.”

But, is all of this so smart? Am I adding additional, unnecessary stress by playing these spy games? At what point do I just blow my cover, let “them” catch me and relax about who I am? I am a number crunching photographer who loves riding my bicycle really, really fast and just happen to live with MS.

How about you? What has it been like to tell your colleagues, friends and family about your life with MS? Are you out at work with your diagnosis and how did you overcome any obstacles? Or, like me, are you leading a double life?

Best always,

Agent C.

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