Wednesday, December 8, 2010

I'm sorry....can I verify your credentials, please?

A man's illness is his private territory and, no matter how much he loves you and how close you are, you stay an outsider. You are healthy. ~Lauren Bacall

I have a habit of trying to "figure out" my diseases and which one I'm battling at any given time. Is it the fibromyalgia bothering me or the rheumatoid arthritis flaring up? Is it the snow moving in? Did I go up and down the stairs of our split level home one too many times? Or is it (gasp) disease progression? The last thing I want is someone telling me what they think it is or especially what they think it isn't.

I saw this t-shirt and at the time I chuckled because I knew it was a true statement and I had a few run-ins with folks who compared RA to the pain in their hand or an old sports injury in their knee. Now, I don't even know where to begin about how it makes me feel. Just as thousands of other RA and fibromyalgia sufferers, I have had physicians blow off my pain or just change my medication and hope for the best. I had decided to try a "holistic" approach when I was first diagnosed with fibromyalgia. That doctor looked me dead in the eye and told me that fibromyalgia wasn't real. Hmmmpf.

However, the most painful blows for me are not from the medical community. They're from people I come into contact with on a regular basis. Most of them too prideful to educate themselves on the reality of 1.) Who I am. 2.)The significance of the disease that they are so quick to be experts about. Co-workers, church family, neighbors, and My husband told me once that there are times when it's difficult even for him to believe that there is something wrong or that it's really as bad as I say it is simply because I look okay. Do not be mistaken, I have a wonderfully supportive husband who helps me a great deal with many things around the house and when we're out and about. It's the not looking sick that people can't get past.

But You Don't Look creator Christine Miserandino gives a wonderful visual in The Spoon Theory. I have even printed it off and given it to friends and family members as well as posting it on facebook or emailing it to friends just hoping that they'll read it and grasp some sort of understanding of chronic illness. Unfortunately, the majority of my friends have failed to respond to the article (which is beautifully written, by the way) or be bold enough to have a conversation with me about it.

These diseases are real. The pain is intensely real. My distinct bad attitude towards "normal" illnesses is mutating into something very snarky, but that's a whole new topic for a whole other day. And if tomorrow was anything like today, we'll be discussing it tomorrow.

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