The Balancing Act

I wish this were a new circus apparatus I picked up, but no, just a lifetime philosophy on a chronic condition level. I love the Aristotle and Maimonides principles of balance and ratios. But sometimes I'm just sick of feeling like I'm walking on a tightrope just to get through the day.

Anyone who spends a lot of time trying to explain weird symptoms to healthcare practitioners knows the doctor's office tightrope walk. I feel the need to tiptoe around my symptoms. If I fall down on the under-explaining side, then I risk the physician not getting the full picture and moving forward with a plan that may not take all my concerns into account. But if I fall down on the other side, I risk being lumped into the disbelief, hypochondriac, no-way-you-feel-all-that-and-look-so-healthy category, at which point the physician stops taking my concerns seriously. I am fortunate to have found many practitioners for my medical team who listen to me and take me seriously. I have a handy tool in my pocket, in that I am a doctoral-level healthcare practitioner myself. It gives me a little armor to push and advocate for myself a bit more assertively than many of my peers with invisible conditions. And yet, even I find myself gripped in the anxiety of not being taken seriously, and facing the constant questions of, "Really? Can you bend your thumb to your arm and stuff?" when meeting a new physician. (Answer: Yes I can; in fact I can do all the bendy things with my Beighton score of 9/9. And also everything hurts and I often feel one wiggle away from passing out so that's cool.)

Then there's the trying to be a normal young adult tightrope. What social activities are worth pushing through not feeling great? Is this hike and stunning view worth pulling myself out of bed every morning the next week with a heavy head and aching joints? Do I put a knee brace on and ruin my cute outfit or do I sit out while all my friends dance? Do I spend hours and energy going to doctor appointment after doctor appointment in hopes of an answer before my healthcare changes, or do I just read blogs and forums and try to problem-solve my concerns with lifestyle changes that may or may not be relevant to me?

And the basic getting through my workday tightrope. Do I use this brilliant, perfect, but physically-demanding-on-me intervention with a child, or do I save it for a different day when I may or may not feel a little better? Do I brace my back alongside bracing my emotions for the inevitable comments on my "quick weight loss" from the loquacious moms of my kids? Do I wear visible braces and get ready to answer patients' parents' questions with "oh just an old gymnastics injury acting up. Again."? How do I conserve my own energy while providing the best possible care to my patients? 

There's also the symptom tightrope. On one side the symptoms are just my current "normal" or baseline - the pain and the unpleasant sensations I experience every day. On the other side are regular ailments, like my newly discovered dust allergy or the common cold. Trying to navigate which symptoms belong in the EDS category and which symptoms belong in the regular human living in a dynamic environment category can be hard to tease out sometimes, providing its own tightrope tension headache. 

The tightrope seems to get longer and longer the more fatigued I get. And with a chronic condition, there certainly isn't an end in sight. The tightrope stretches on, and I tiptoe around hoping to stay right in that ever-balanced point, because each tip over to the wrong side will set me back in either direction. I guess at least my calves will get super strong from all the tiptoeing...

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