My chronic illness isn’t a Chronic Illness. That is, The Professionals can’t name it. Oh, they try — half-interested in figuring me out, half not. Often I feel like more of a hassle for everyone involved than an actual, living, breathing being who desperately needs her shit solved.
For whatever reason, I do not fit neatly into the system. Not for a diagnosis, not for a prescription (or several prescriptions), not for any real cure. Standard Operating Procedure does not apply. My case is “complex” — although clearly my expectation of how vigorously Western Medicine should pursue un-complexing things differs significantly from theirs.
I ask “Why?” a lot. Doctors don’t like “Why?” I long for them to take my case as personally as I do, to hear and learn and apply the intricacies of how I tell them my body behaves, and assist me in piecing together the mystery.
After decades of trying to suss out a cornucopia of confounding ailments, I’ve given up believing their deep investment is possible. Conventional approaches are much too entrenched in the research of fifty years ago, inflexible in their thinking, invested instead in their known routines and procedures. Routine I am not.
Still, I feel like f-ing crap every day. Shouldn’t somebody do something?
I’ve been given many “official” labels for my condition(s), sure: Autoimmune Thyroiditis (Hashimoto’s), Hypothyroidism, PCOS, Depression, Anxiety, Eczema, POTS, SIBO, Interstitial Cystitis, IBS, Microscopic Colitis. I suffer from Unexplained Infertility, and am a Habitual Aborter (HA means I miscarry pregnancies often — even the acronym pisses me off.).
I pee a lot, sleep poorly, have mood swings, random freak outs, and mad itches. I can’t digest my food properly or therefore utilize basic nutrition, and some days I can barely hold myself upright. Gravity is not my friend. I can’t hold a regular job yet somehow also don’t qualify for disability. Social occasions can be hazardous. Every day is difficult, although I’m never sure in which way it will prove so.
Of course, “Crazy” is the unofficial term that is most often implied, though not spoken, during the endless clinic visits. It’s all in your head, sweetheart. These tests look fine. Just take a pill, problem(s) solved. A few years ago, I actually had one P.A. pull me aside, out of my husband’s earshot, and suggest perhaps HE was the culprit: “Are there any problems at home I should know about, Mrs. Bryant? Hmm?“.
Screw that guy. I’m not nuts. My husband is fabulous. My lived reality is that the pills haven’t helped much, and the tag words don’t get me far. They are merely clues, directions to head. Those labels are for other people’s comfort, not mine: the docs can tell me what I “have,” insurance companies get codes to deny me coverage by, friends and family find false relief in finally hearing a supposedly proper explanation. “Oh, she has that. Okay, I see.”
But I do not have “that.” Well, I do . . . there are just so many “that’s” to contend with. “That” is not the answer; “that” is but a severely limited view of a super huge whole. Treating symptoms in isolation won’t ultimately fix me, nor will blaming the patient and/or her family when you can’t solve something simply and be done.
While I am chronically ill, I do not have a specific Chronic Illness. I have a puzzle instead. Despite countless tests and theories over the years, no All-Encompassing Explanation has yet been uncovered. No governing, Unified Plan addressing what has gone offline has been nailed, nor a strategy for how to get all systems back on track.
My goal is to be a healthy, human woman, not a patched-together quilt of band-aided-over maladies merely limping along. There must be an identifiable beginning point, a root cause. Seeking a logical, science-based rationale for how and why my body fails the way it does . . . and a concrete path for changing this if possible is a reasonable hope. Making me feel like it isn’t: there’s your insanity.
I’m no longer looking for a diagnosis. I’m looking for an answer.
What have your experiences with chronic illness and/or conventional medicine been like? Please leave any comments below, email me at firstname.lastname@example.org, or use the Contact page on the 10PP website. All thoughts, reflections, attitudes are always welcome (within reason!). Let’s discuss.
© 2017 Rebecca Bryant/Ten-Percent Panda
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