May 20, 2012

What Happens When I Google My Symptoms...

...I am led on a wild goose chase and my easily distracted, wandering mind indulges in the 'what if's' and pretty soon I start to worry if I have other rare conditions and click on random link after link in pursuit of answers. Although I start off on more reputable sites like Wikipedia and WedMD, I often end up on YouTube, watching videos about babies born with a foot in their brain, or worse, without a brain. Not to make light of either of those conditions as they are both extraordinarily rare and devastating. I couldn't even tell you how Googling acid reflux led me to those YouTube videos, but the point is I waste an exorbitant amount of time researching my conditions on the Internet when that is the work my doctors are supposed to be doing on my behalf in the first place. But since they seldom do, I am usually left to my own devices.

I believe only have one honest doctor, my EP, who reminds me nearly every time I see him that it's often impossible to put a neat and tidy label (diagnosis) on anyone and that the reality is there are hundreds if not thousands of medical conditions out there that have yet to be named, either because they are extremely rare or have been mis-categorized, lumped into a syndrome when in reality putting a label on anything may impose an overgeneralization, or at worst, even a catastrophic misdiagnosis.

Diagnoses are more like starting points. That is, it's 99% certain that I have autonomic dysfunction. It's also highly probable that I have POTS or a POTS-like condition. My EP does not know and has not classified what "type" of POTS I have despite my persistence to find out.

Too bad I am the labeler type who likes to define everything and then tie it all up in a neat and tidy bow. No two people with POTS have identical symptoms or numbers. Very similar, often. Identical, almost never. We are like snowflakes, if you will. Each delicate, each different. Pretty vague, but that's about as deep as my doctor is willing to define dysautonomia...

Although it's practically an oldie, this song randomly popped into my head today. It reminds me of all the strong and brave women in the POTS and EDS communities and how different we are from typical patients. An anthem for POTS/EDS patients perhaps and how difficult it is for doctors to define us. Many of us are a walking episode of 'Mystery Diagnosis.' I appreciate how Natalie Merchant subverts the negative stereotypes surrounding rare illnesses in this song. She shows us that being a medical anomaly is more of a 'Wonder' than a burden. And that's how it should be.

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