(As Invisible Illness Awareness Week continues, I am dedicating my posts to those with Chronic Invisible Illnesses, and to helping those who may know of someone with an Invisible Illness better understand them. It is an honor for me to be a part of this cause!)
Not only do I blog about chronic illness, I “talk the talk” as well. Having been chronically ill since 2003, I seemed to have developed somewhat of a “sixth sense”. it is weird, but I have this instinct for being able to “see” people who have Invisible Illnesses.
This summer I was getting coffee at a Dunkin’ Donuts and I saw this pretty young woman carrying her infant in the removable car seat. Everyone was remarking how beautiful the little girl was and she had one of those traditional names like Charlotte or Lily that I love.
I said to the woman, “How are you doing?”, and I told her how I remembered how heavy carrying a 20 pound car seat with a ten + pound baby was. She said, “Yes it is hard and…it’s not just that…I have M.S.” I told her that I had Lupus and I had Rheumatoid Arthritis when my son was born. “You did? You do?” I told her my story, the short form, about how I used to have to crawl to Tyler when I could not walk and Tyler was crying or needed to be changed or fed.
And then, she started to cry. “There’s no one else like us in the world!” And she broke down.
I put my arm around her. “Aren’t you on any support groups for your M.S.?”
“Oh, no. Those places are just depressing. People just moan about how bad they feel. And they don’t understand what it is like to have M.S. and have a baby.”
I guess I had been living in a bubble. I had thought if you had a major disease in this day and age, you would be on at least one internet support group. And that if you were a mom with a major illness you would be on several!
But I live in the world of Social Media. I am a blogger, a tweeter, I am on Face Book, Google+. I never would have made it, literally, not have been on this planet today without the support of my friends that I have found on the internet.
“Rachel, you are wrong about you and I being the only ones! There are hundreds of thousands of women just like us who are raising children while dealing with not just one disease but many! They are doing it every day. They are getting through it, and you will too!”
I told her about sites like But You Don’t Look Sick and Chronic Babe. That they weren’t the depressing, “poor us” sights she thought they were. That they were fun and the people on them were interesting and cool and beautiful and they were from all over the world. And that we laugh and that I have made REAL friends that I can share my life with, and yes, when I am in trouble, I have their phone numbers because sometimes I need to speak to someone…
Just like me.