There is sisterhood or brotherhood out there for you even if you have a super rare, hard to pronounce illness. Some of you reading this have an illness so rare that even your relatives can’t remember the name of it. When people ask me why I carry a cane, the conversation goes something like this:
Person: What’s wrong with you, if you don’t mind my asking?
Me: I have Myasthenia Gravis
Me: Myasthenia Gravis.
Me: It’s a rare neuromuscular autoimmune disease similar to Multiple Sclerosis (MS).
As someone with an aunt who has MS, I sometimes joke that it’s as fun as MS but five times harder to pronounce. (She’s a family friend I call “Tita” even though we’re not related by blood because I’ve known her all my life.)
A 1 in 50,000,000 Life
I can’t blame people for being confused by MG. After the neurologist diagnosed me in October 2008, I went home and practiced pronouncing it for two hours. I couldn’t possibly tell friends and family I had a 1 in 100,000 disease that I could not articulate!
I’ve never met anyone with MG or PCOS (polycistic ovarian syndrome) for that matter. The odds of me meeting another person who has all my illnesses are less than 1 in 50,000,000. At first, this seems like a lonely reality. But I’ve had family members with cancer and met women bravely battling fibromyalgia and Lupus everyday. I learned two things:
1. We should all bind together to vent, find comfort, and discover solutions. That’s what this website is for!
2. The heartache is the same everywhere. No one I met EVER said, My disease has given me more energy. This doesn’t hurt. This has made life easier!
Stay Tuned! Interviews with Patients of All Stripes Coming Up
I will be interviewing brave people who have survived or are currently battling cancer, Hodgkins Lymphoma, lupus, MS, fibromyalgia, and other illnesses. We will learn from each other. I will ask questions like:
- What are your symptoms?
- What has helped you survive?
- What did you learn about style from your struggle?
- What’s the most important thing you learned about life?
Stay tuned! Subscribe to this blog. Follow me on Twitter; my handle is @JessicaGimeno.
Met a Wonderful Young Man on the Train
Two days ago on the train I made a new friend. I boarded the Metra with Erica Kane (that’s my cane’s name). The two of us has a hard time finding a seat. Then this young man with a large cast on his left leg made room for us. It turns out my new friend, 21-year old Elliot, has MS. For thirty minutes, we laughed as we talked about going through some of the same challenges, medications, and treatment. We laughed like two strangers who just discovered they love the same sports team or TV show.
An hour after my ride, I was in my office crying in pain. I shut the door so no one would hear me. When I came home that evening, I started to think: I hate my life! It hurts. My mother prayed with me for strength. And I remembered all my blessings: an ability to work despite the myriad of illnesses, awesome nieces and nephews, supportive parents…By the time I put my head on my pillow: I realized that knowing people like Elliot has redeemed the pain. This bond with other “professional patients” has changed me forever.
Have you found comfort in other patients? Do you have a rare illness?