Excited over sucky things.

Today I read the Wikipedia entry for Ehler-Danlos Syndrome and got excited. I e-mailed my mom right away. She’d heard of it too, agreed the similarities were plentiful. She was as eager to hear the geneticist’s test results as I was. If I had it, then I probably inherited it from her.

They say that no news is good news, but they are pretty much wrong. People often cannot fathom why I seem eager to be told that I have Multiple Sclerosis or Parkinson’s disease. They’ve heard about the symptoms and they cringe at the possibility. Who’d want tremors and numbness? Who’d want to carry that label around for the rest of their life?

The thing is, I’m already sick. I’ve already got a grab bag of horrible symptoms like ordinary evil itchy welts, good ol' fashioned fecal incontinence, and hallucinations induced by migraines instead of recreational drugs. Now, I would like to know why.

For a while my doctors and I were pretty sure I had MS. Having Multiple Sclerosis would not have been the worst thing in the world. It’s rarely fatal, and it’s got more than one organization dedicated to improving the lives of its’ sufferers. My wonderfully sensitive and compassionate doctor consoled me when the test results came back negative. “I’m sorry, I know that you want answers.” She knew I didn’t want Multiple Sclerosis; I just wanted an effing explanation.

In the best of cases, a diagnosis can even mean a cure. And although I’ve long since given up on the idea of a magic pill or a miraculous therapy (pain killers and massage will have to do), I know that the details of successful treatment are better crafted by doctors who understand why your symptoms are happening. The ointment to treat one kind of rash makes another kind of rash worse. And sadly the diagnostic procedure in many cases is to give the patient the medication for the suspected illness, and if the patient improves, then the doctors assume their assumption is right. If that sounds iffy to you, imagine being the guinea pig given medicated cream for ringworm when you really have eczema. The itching was so awful I cried.

So now, I’m trying not to fall into the trap of self-diagnosis. Many “perfect fit” diagnoses have come and gone, and this particular disorder would be no cakewalk. Although Ehlers-Danlos is rarely fatal it can have potentially life threatening complications. It’s not as straightforward as their depression theory but not as terrifying as their multiple heart attacks theory.

But this disorder could explain why I was a contortionist for the circus in college. It could explain why my skin is so translucent that you can see delicate blue veins crisscrossing my chest. It could explain the fistful of skin that can be stretched off of my belly. And it could explain all the pain. And if I can’t have a cure, I would love an explanation.