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When To Tell Others About Your Multiple Sclerosis Diagnosis

Written by Francie MacDougall
Posted on November 2, 2021

The question of whether or not to reveal I had multiple sclerosis (MS) hung over me when I got my first job and had to have a physical exam for insurance. I feared being denied insurance because something might show up in my medical records or exam.

I was fine for a long time — most of my career, in fact. I managed the progression of the disease with medication, and I attributed a drop foot or a sluggish day to a late night. I had shared my diagnosis with a good friend/roommate, but I’d trusted her discretion.

Like most of us, I assume, I wanted to be judged by the quality of my work rather than the quality of my work “despite my disease.” I wish that wasn’t a concern. We all take medicine. We all deal with challenges in life — and I do believe that, in most ways, what doesn’t kill you makes you stronger.

So, you might tell your boss or your colleague you have MS because it helps complete the picture of who you are, but it doesn’t change the reality of what you can do. I never told anyone officially, but I think everyone knew. I fell a few times and walked a lopsided MS walk. When the magazine I worked for folded, I spoke to our human resources department, and that conversation felt oddly circumspect.

I wanted to negotiate a way to keep my health insurance for a longer time period and get advice on how to proceed with a job search. But the HR representative seemed cagey, concerned about her duty to me versus a duty to the company. I wish she had been able to help me, first and foremost. As it was, I had to go to another doctor for a year until we could switch insurance packages to find the one that accepted my doctor. And I let my long-term care insurance drop because I didn't know I’d been paying for it.

I want to blame someone — HR or myself — for being so naive. But maybe it’s our society’s fault, where we all fear losing our sense of security? I kept my secret for as long as possible. But harboring a secret feels like hiding shame, and there is no reason for shame. We just have to keep reminding ourselves — and others — of that!

MyMSTeam columnists discuss multiple sclerosis from a specific point of view. Columnists' articles don’t reflect the opinions of MyMSTeam staff, medical experts, partners, advertisers, or sponsors. MyMSTeam content isn't intended as a substitute for professional medical advice, diagnosis, or treatment.

Posted on November 2, 2021
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Francie MacDougall is a freelance writer who lives in Birmingham, Alabama. She was diagnosed with MS in 1990. Learn more about her here

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