Talking About It

Before I found out I had multiple sclerosis, I told my family, my friends and my boss what was going on: the weak leg, the doctors, the MRI, the spinal tap. When I found out that the tests were positive, I pretty quickly told them that news as well. I was scared, but I was never alone with this.

I’ve learned since that some people take the opposite approach. They feel that they’re managing this disease well if they never have to tell a soul. And there are others who fall somewhere in between. MS is something to be mentioned only to those close people who really need to know.

To share, or not to share. I think of this as one of the defining issues in the way we each choose to live with this disease.

At first, it was hard for me to understand why anyone would choose to keep MS “a secret.” Wouldn’t there be fewer misconceptions about this disease if we all just talked about it? Wouldn’t it be less scary? Less confusing? Wouldn’t you want all the love and support that can be offered by friends and family who know what you’re going through? I don’t want to judge, but for a long time I struggled to to put myself in the shoes of those who keep silent. I just couldn’t picture that choice.

(Please, don’t send me scathing comments yet. Keep reading.)

Over time, I’ve come to understand that there are as many reasons not to share this information as there are to share it. Maybe your professional opportunities would be limited if your employer knew that there may be struggles to come. Maybe you’re avoiding worried looks or unwanted sympathy that you might face if you talked about it. (I wish neither of these things were true, but I know we don’t live in a perfect world.) Or maybe you just don’t want MS to be one of the things that defines you in the eyes of others. I get that now.

These days, when I meet new people, I find myself thinking about whether to share and how much and when. At first, it’s not really relevant information. It’s not like you’d walk up to a stranger and complain about your migraines or the bunions on your toes. Your health problems are your business.

But over time, as those acquaintances or professional contacts cross the line into friendship, not saying anything doesn’t feel quite right to me either. I have to go to the hospital for an infusion once a month. I don’t want to slip away mysteriously to do something that’s just a real and regular part of my life. I don’t have anything to hide. At the same time, “By the way, I have MS,” is a bit of a conversation stopper. You don’t want to put other people in the awkward position of not knowing how to respond.

I’m still working on the right formula for telling or not telling or who to tell or when to tell. I’m also really working hard at understanding why others make the choices that they do on this same issue. I wonder if you’d be willing to share your approach and your reasons for it. Do you talk about MS?

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Katie

Katie Jennings, Blogger

Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS in December 2012. She blogs about all of it at http://steadyshegoes.com.