Wheelie Gripes: The Worst Thing About Not Having a Diagnosis

There are a lot of things that fucking suck about having an undiagnosed chronic pain condition. It’s a long-ass list that others have tackled far better than I could. But there is one thing that, for me, is the absolute worst thing in this entire situation.

It isn’t the disbelief of the doctors, though that’s disheartening. It hurts to have to run down lists of symptoms with every new visit, every new face, and get told to take some naproxen and walk it off. It sucks to keep pain diaries and symptom logs only to be told that you can’t possibly be experiencing the pain you say, because you aren’t splayed on the floor screaming. It’s frustrating to have your high pain tolerance used against you, used to gaslight you, and have all of your legitimate concerns dismissed because don’t you know how rare it is for someone so young to be suffering like this? (And yes, actually, I do know how rare it is. Looking around at a constant stream of my peers who can, you know, walk, sort of gave me a hint.)

It also isn’t the worst to deal with disregard of strangers, though they certainly seem to revel in treating you like a petulant child. It’s blood-boiling when they stare at you with disdain, demanding to know why someone so young and seemingly healthy is demanding equal access to their store, restaurant, music venue when you can’t even give them a valid reason to believe you need or deserve it. It’s unsettling when they refuse to accept “I don’t know” as an answer to their invasive questions, and then proceed to quiz you about your health history, and tell you about their great-aunt’s-girlfriend’s-nephew’s-cousin who had this illness or that disability, and you should get tested for it. It’s annoying to have your personal medical issues treated like fodder for public guesswork, and your demands for privacy treated like snobbery.

The worst thing isn’t even the disbelief of your loved ones, though that’s a special kind of sting. It’s confusing how they could scream in horror when watching a part of your body bend, swell, dislocate, shift in a way that it never should, yet they’ll still eyeroll when you insist that no, really, you can’t “just walk” for some particular errand. It aches that they guilt you for not being around for more social events, when you’ve told them again and again that leaving the house is agonizing. It cuts really fucking deep when they “forget” that you need accommodations, when they scoff at the idea that you’ve really seen that many doctors, had that many tests, gone through that many treatments and still don’t have an answer. It kills to sense their impatience, to feel like they’re blaming you for not having an answer to give them yet, a valid excuse for your behavior.

No, for me, the worst part, it’s from the person who treats me the most callously in all of this…it’s from me. Because this endless symphony of doubt from the outside world bores into my brain, it plants its ugly little seeds and then watches first with bemusement, then with devilish glee as I spend every waking moment questioning myself, berating myself, hating myself. There’s nothing worse than that. It’s the reason I push myself too hard (because surely my abilities can’t be as limited as I think they are!) and end up in agony. It’s the reason I refuse to purchase quality mobility devices, because I just can’t justify spending that sort of money for what my self-doubt tells me is a completely made-up disability. It’s the reason my anxiety is skyrocketing, my pill regimen is getting heavier, and my pain is worsening. It’s the reason I can’t fall asleep at night, and the reason I can’t get out of bed in the morning. It’s the reason my life is crumbling around me.

But it’s all in my head. Somehow, I’m thinking my body into brokenness. Because otherwise, they’d know what’s wrong with me…right?



About bunnika

shout at the brick wall; if it doesn't hear you, shout louder
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One Response to Wheelie Gripes: The Worst Thing About Not Having a Diagnosis

  1. kesiana says:

    (Okay, this entry is kind of old and all, but if you didn’t want comments on previous entries you’d disable them after X weeks/months, right?)

    This sentiment is anything but uncommon! I don’t get why the medical field can’t give people “placeholder” diagnoses–it validates the person’s feelings, gives them something to throw in idiots’ faces when told they’re faking, and it’s something to report back to the insurance company with when they’re trying to deny something. It’s not like it would be hard–like, for you, “pain disorder NOS” or something (possibly in Latin, to sound more official).

    Yeah, yeah, “some people are faking for painkiller/SSI/parking placards”, but I’m not saying a placeholder DX should be given immediately to every single person seeking one. It’s just that some problems CAN be proven, like your aforementioned “oh wow, knees aren’t supposed to bend like that, no wonder you’re in pain”, even if multiple tests can’t figure out WHY for some time.

    Hugs if you want them; I’ve only read two of your entries, but I think I’ll be reading your entire blog now. 🙂

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