Does Community Exist for People with Rare Illnesses?

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

Person: What?

Me: Myasthenia Gravis.

Person: What?

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

paper-chain-in-the-dark-1215912-mI 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 who has MG and PCOS (polycistic ovarian syndrome) and Bipolar Disorder.  Until last month I didn’t even have any friends with MG.  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!

 

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.

Your Turn?

Have you found comfort in other patients?  Do you have a rare illness?

Stay tuned!  Subscribe to this blog.  Follow me on Twitter; my handle is @JessicaGimeno.  Meet other sisters and brothers on FI’s new Facebook pagehttps://www.facebook.com/fashionablyill 

JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

One thought on “Does Community Exist for People with Rare Illnesses?

  • December 17, 2013 at 6:46 pm
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    I have bipolar, ADHD, ulcerative colitis and hypothyroidism. Sometimes, amazingly, I am healthy. But sometimes, I am sick four ways to Wednesday for weeks or months. I keep going with my lovely life, but it would be nice to have someone who can relate to the particular intertwinings I struggle with. There are things about my diseases that are disgusting, or scary, and I sometimes feel like the people who care about me just have no way to relate. When I say I’m sick, I’m not saying my nose is stuffy or my neck is sore and I can take some Tylenol and I’ll be better in a few days. But when I try to explain it, I just go on and on and feel like I am complaining and annoying. It is lonely, indeed.

    Reply

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