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Telling People You Have MS

Posted on: September 12th, 2013 by Erica Daher
Category: Managing MS


orange kitten coming out of red shopping bagI remember coming home from my neuro’s office on April 15th, 2012. After nearly four years of doctors testing, poking and prodding me, the results from my spinal tap were in: I had Multiple Sclerosis. It was a Sunday afternoon.

While I wasn’t fully prepared for the diagnosis, I could handle it. However, I was not prepared to tell my mom who was waiting at my house, babysitting her grandkids. I remember coming through the back door into the den where my mom and dad were playing with the kids, and I nonchalantly told them I had MS, just as coldly as the doctor had told me. I went upstairs and cooked dinner for the family. Clearly I wasn’t ready to tell anyone, let alone discuss it.

As the months passed, I was definitely sad. I wanted to feel bad for myself, but having two small children left no time for that. It was my silent secret. I remember sitting at my son’s soccer practice listening to another mother bitch about her injured foot and how she couldn’t play tennis for a few weeks. She went on and on. A hurt foot? That was fixable. How dare she? I wanted to strangle her. Didn’t she know how I was suffering or how many others with MS endure much worse?

I remember another time I was picking up my son from his after-school program and in front of all the mothers I had an MS moment; I just completely forgot what I was saying. I started sweating. I literally forgot mid sentence what I was talking about. Even my four-year-old son looked up at me waiting for the words to come out of my mouth.

Then it happened. I was out to dinner with friends who had no idea how I was suffering silently. The couple mentioned that they were participating in the NMSS walk the next month. Awkwardly I blurted out that I had MS. There it was and it was not so hard. I didn’t get the sad, sideways glances that I thought I would (except for my older-generation dentist who cried when I told him, but that’s for another blog entry).

After that, it was a little easier. I cautiously mentioned my news to people that I could trust. I started with the pediatrician when I had to take the kids to get their vitamin-D levels tested as the only hopeful MS preventative there may be. Then it was my son’s school when he told them that I had a nurse coming to see me at the house (only for steroid infusions, nothing major, but it was to my four-year-old). Then to friends and family that I knew would want to know and help.

It’s not easy to share a big secret. But it’s also not healthy (or fun) to keep it inside. Telling people and talking about it might be hard at first, but opening up is the first step in dealing with it.

Here’s my advice for sharing the news:

  • Don’t expect certain reactions: People will respond in unexpected ways. I got reactions that ranged from clearly uninformed to no sign of emotion whatsoever.
  • Know that everyone’s an expert: Expect some people to turn into world-renowned neurologists with cutting-edge advice. Don’t get your panties in a twist (the stress isn’t worth it); let them talk — and then call your friends with MS to badmouth them later. Kidding. Kind of.
  • Appreciate the people who care: Love the friends who listen and give you hugs because that’s really all you want.

For lots more helpful tips on telling the various people in your life that you have MS, check out

Do you have any advice for telling people you have MS? How did you share the news?

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