My Chronic Illness Isn’t A Chronic Illness

chronic illness

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 tenpercentpanda@gmail.com, 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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Overcoming Miscarriage: From Patient to Patience

Science sez our cells continually replace themselves . . . and that this ongoing, nifty in-house auto-rearranging results in a full new body every seven years.  If so, then I have just about created a new human being by now after all: me.

Okay, so I was actually trying to make a baby, but whattyagunnado?

Seven Years

Yes, it’s been almost seven years since our first miscarriage.  I can still hear my husband’s shocked gasp after the ultrasound technician announced that there was an “empty sac” in place of what we had both whole-heartedly expected to be the first glimpse of our happy budding embryo.  “Empty sac” is not a child.  “Empty sac” is not a little being to love and nurture and watch grow and laugh and tickle and goof around with.  “Empty sac” is a bad joke.

A really shitty, perverse, unfunny twist of fate.

Looking back, it was obviously naive of us to not be even the slightest bit prepared for a negative outcome, but truly: we were completely blindsided.  It still stings.  This was our first pregnancy, and who could know starting out that something so supposedly natural also had such high potential to be so impossible?

In the looong, agonizing time since, something has shifted inside me, along with my cells.  Some major part of me has come to realize that resistance is futile.  The new cells understand that there is no rushing, there is no controlling, there is no begging or pleading, or changing things.

That doesn’t mean we’re giving up.  Rather, it’s more of a peaceful state instead of a tortured one.  What my shiny, fresh cells have latched onto instead is hope.  Hope is more powerful than everything, when applied correctly.

Before I sound absurdly naive once again, let me clarify: there is a difference here between magical thinking and willful choice.

I choose to believe we can still build a family.  I choose to believe my body can heal, that I can help it find what it needs, that we can still connect, at the right time, with the little soul(s) out there who want to be a part of our strange, odds-defying dream.  I choose to no longer force, to trust that the universe is indeed looking out for each and every one of us, as long as we hang on and keep doing our best.

The very awesome poet Wendell Berry refers to this kind of endless, but optimistic, slog as “the patient work of the seasons.”  It’s about allowing things to happen, and being open to the slow, methodical shifts that need to occur to bring a thing into being.

You can’t hurry Spring . . . but one day it does arrive.  In due course.  After winter.  After Patience.

Seven Minutes

For the longest time, I was a different kind of patient.  I belonged to the doctors instead.  I was their patient, and it stunk.

I was a name on a chart, a lady with a ticking clock and mysterious ailments, unwisely attached to pursuing an ill-advised (even at age 39) agenda.  The power was all in their hands: to cure or not cure me, to perform or deny each procedure, to tolerate (or not tolerate) the incessant questions of a possibly — probably — unhinged woman so stupidly, nakedly in denial.

I felt their skepticism keenly.  As their patient, they were never really on my side.  I was just one of far too many nutty, needy gals they needed to deal with within their overscheduled day, during the average seven-minute appointment Western medicine considers appropriate to address all conditions.

Seven minutes.  You know what else also can’t get accomplished sufficiently in seven minutes?  Umm, just about everything?  Okay, maybe minute rice, three-minute abs, a five-minute journal can be handled decently enough . . . but don’t tell me the intricacies of a female body gone offline can be solved without considerably more care and attention.  The standard system is not a system designed to tackle complexity; it is a system designed to shuffle as many through as it can and be done.

Well, I’m done with that approach.  Now I’m my kind of patient instead.  Me and my overhauled newbie cells will nurture and believe as we see fit, and keep hope abundant and ever-present.  We’ll investigate and consult with carefully-selected medical professionals as needed and weigh what they say vs. our own experience and general BS-o-meter.  We’ll trust in being this kind of patient now and allow for the seasons to perform the work, and hopefully, ultimately, the miracle.

Nowadays, I’ll take seven transformative years over seven rushed, pointless minutes and count myself as alive, even lucky.  It’s still not easy, but the power is in the right place now.  Miscarriage is ours to overcome; it does not belong to anyone else.

What do you think?  How long have you been TTC?  Have you had some unhappy run-ins with conventional medicine yourself?  How have you coped?  Please leave any comments below, email me at tenpercentpanda@gmail.com, 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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