When to Tell Someone You Have Multiple Sclerosis

  • I choose to tell others I have MS in part to put a face on the disease and then to help lift the veil of mystery and stigma associated with it. In a very real way, multiple sclerosis can be an invisible disease absent a clear public face; and with the use of the recent disease-modifying drugs, fewer MS patients end up in a wheelchair or severely disabled.

    Would you know it if the next woman in the grocery line had MS? Is there a secret code by which we can identify each other? Perhaps a special tartan or favorite hairstyle...

    When I was first diagnosed, I felt alone and like nobody could really understand what I was going through. It was scary and frightening with all of the uncertainties and unknowns. I did not know anybody who lived with MS so I had no frame of reference.

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    But upon telling, I was greeted with such support from my Middle Realm that I knew life would go on. Following this small announcement, I was exposed to such understanding and kindness. One father of a student even called me brave. Well I wasn't so sure it was bravery, but I guess it was daring. A bold move perhaps.

    However I did not immediately tell my fellow musicians for fear of prejudice. When I needed to rig up a strap to help hold my horn because my left arm was too weak, I claimed a vague nerve problem when asked about it. Coming off a tough 5-day round of IV Solumedrol with a marshmallow face and performing in an orchestra fundraiser, I hid out on 4th horn and basically went through the motions, played meekly, and hoped to go unnoticed.

    So now.... three years later.

    Who do I tell?

    Anybody who asks, “how did you hurt your leg? Or via the internet, I guess I tell the world.  

    Why do I tell?

    Most importantly because I want fellow MSers to know, truly know, that they are not alone on this journey. By telling the world and discussing all aspects of multiple sclerosis with each other, we create an Inner Realm out of the Outer Realm.

    In this age of google and dogpile, anybody who knows me or looks up my name will know that I am a woman, a musician, a friend, living with MS.

    So when do you tell?

     

    The answer might be never.  But perhaps we should come up with a secret handshake, just so we'll know each other in the grocery aisles.  Until then...

     

    The whole world doesn’t need to know... unless you want them to know.

     

    Who do you tell? When and Why?

    Part 1 - The Inner Realm

    Part 2 - The Middle Realm

    Part 3 - The Outer Realm

     

    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: August 22, 2008