Why I Feel Like a Chronically Ill Underdog

Today, I saw an infectious diseases specialist. She was lovely, caring, and invested in my care, but in the end, this appointment was just another metaphorical box to tick off in my quest for a diagnosis. You see, I’m sick and have been for a long time according to this lovely doctor – sick since 2012.

I couldn’t believe it. Sick since 2012? According to my medical chart’s hard data of vitals and lab work, I’ve been sick for over five years but, apparently, chose to ignore it. Why would I do this? Why would my doctors do this? What kind of reckless game was being played with my health? Or was I just doing what I had been conditioned for years to do – ignore symptoms?

That’s right. You read that correctly. The conditioning borne through years and years of figure skating and familial reinforcement led me to think that my symptoms weren’t anything to be alarmed about. Part of me hears AC/DC singing “Stiff Upper Lip” when thinking about how I’ve been conditioned to look past the ephemeral moment and go for that golden ring just beyond my reach.

“Fever? Oh, it’s probably nothing. I just overdid it today…”

“Sore throat? C’mon! It’s allergy season…”

“Headache? Hah! Who doesn’t have one…”

“Fatigue? I’m just not eating well enough. I’ll add some magnesium and zinc to my dinners…”

And on… and on… and on…

“Complexion? I know it’s pale. I just need to do this or that or the other…”

So many of us are conditioned to overcome. We were the underdogs in 1776; yet, we prevailed! And, my fellow Texans would shout, “Underdogs? Remember the Alamo!” We are a country and society that loves a good underdog story. However, when it comes to chronic illness, it’s not a battle of an underdog. It’s just not that black and white.

The battle, in my case, is trying to discover what on earth is wrong with me. It’s shuffling between specialists – all of which are convinced that I’m sick but can’t prove what it is, and that is frustrating because all of these learned doctors can’t provide any relief without a definitive diagnosis. It’s moments like the one with another specialist whom shared that he was sure what label belonged on my illness, but couldn’t provide said label because it isn’t his field.

Stiff upper lip? Forget it. It’s a rigid, clenching feeling just above your stomach and below your heart that threatens to loose itself, that must be reined in and contained lest words that will be regretted will fly. That’s the moment of strength – when one contains the ever waxing and waning frustration that dwells in the center of your chest borne of chronic uncertainty.

Chronic illness is an exercise in chronic uncertainty. We wait and wait, all the while jumping through the required medical hoops that are gapped out by availability of the specialist and all the while getting sicker and sicker.

Recently, I was talking with my therapist about my experience. While this man’s “poker face” is good, he couldn’t hide his own frustration on my behalf. He said something along the lines of, “What if they can’t find a diagnosis?” To which I replied, “Oh, they will when I’m on an autopsy slab.” In the nine years that I’ve been seeing him, he’s never seen or heard anything so grim that wasn’t followed by a dark smile and a stab at humor. That moment was the single exception in nine years.

Hopefully, I’m wrong. I want to be wrong. I want to keep fighting like the underdogs who came before me. Diagnosis or no diagnosis, I want the treatment for what three different specialists strongly believe is my diagnosis, but I haven’t jumped through enough hoops or spent enough copays or given enough wait time at appointments or have had enough blood draws for lab work or whatever nonsense awaits me while unravelling the enigma of my health.

While I didn’t start pursuing this issue until the end of May of 2017, because I was too sick to even do a load of laundry at times, I’m still hopeful and grateful to be taken seriously. In the end, I just want relief and would be happy with just half my energy back. Whatever autoimmune label awaits me, I just want the treatment – but, no label means no treatment.

So, I try to keep the underdog spirit alive by getting up, proverbially dusting myself off, and going to the next appointment.

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