Red
Warlock
- Apr 10, 2019
- 744
This medical diagnostic odyssey is more than arduous. It's around the six year mark now; six full years (over 2000 consecutive days) of constitutional mayhem and unbearable pain, dragging myself along living a quasi life, trying to be brave and quiet, while the whole time people around me try to convince me that it's "all just a state of mind", that I just need to do basic things like "drink more water" as I sweat and shiver and try to force myself to eat and smile and participate as much as I can while invisible knives stab into my body the whole time…
Bad enough to endure all the physical symptoms alone but the invalidation and skepticism on top of it is insult to injury, salt and lemon juice in the wound.
As devastating as having my physical being crumble beneath me just as I began to tolerate and rise above all the emotional turmoil of my youth and young adulthood, and despite various seabed-scraping lows along the way, I truly feel that my mental health has never been better. I no longer feel beholden to my emotions, and others describe me as calm and level headed despite my ongoing medical issues. They still try to argue the toss that it must be "psychogenic" but that stance doesn't hold up under scrutiny - at least they shut up after a while now. I wish it was as easy to prove to the doctors who definitely think I'm either stupid, crazy or malingering.
Medical consultations seem but like cursory lip service; they're performed to appear like action is being taken but nobody actually listens to what I say. They make up their own narrative regardless of my side of the conversation, prompting me to audio record what is actually said in every appointment and then having to contest their version when I become aware of the way off piste story they've tried to spin. Symptoms are continuously shrugged off with unsatisfactory "explanations", both subjective and objective (never the two shall be considered together mind you), alarming test results that correlate with these symptoms presumed to be anomalous and "self limiting". Rolled eyes, sighs, ignored evidence and demented rationalisations that don't even make sense… Yet I'm apparently the crazy one lol
I know it's not the case but it's hard not to feel conspired against, especially when every doctor seems to have their mind made up before I even open my mouth; shrugging me off mid sentence with a sigh and obvious annoyance, not following actual procedure or writing anything down. The body language says, "You've had a couple tests and we didn't find anything conclusive so it can't possibly be in my field, must be something else, see ya."
I've spent weeks/months/years bouncing around between various specialists and some were good enough not to need to ever come back again. Yet the key ones who can measure all the visible, physical signs, ignore the obvious areas of diagnostic value that fall squarely under their scope, instead doing vague, cursory testing for one or two possibilities of many. Then get annoyed when I repeatedly find myself back in the same department because they can't consider every relevant condition in their field before impatiently sending me on too soon. And instead of them thinking, "Ok, so test results and symptoms have brought them here yet again, referred by a doctor who is pressed by written procedure to refer to me because of measurable, objective findings - what am I missing? After running one lot of tests last time and these yielding nothing useful, shouldn't we try different tests instead of THE SAME DAMN ONES AGAIN??" After common diseases and presentations are excluded, surely it makes sense to eventually consider less common conditions? I know Sherlock wasn't real but his quote that runs something along the lines of "when the obvious is excluded then what remains must be considered" is definitely logical and I don't see why it isn't applied in this case.
To top it all of, me seeing all these many specialists is somehow my fault. Dude, I didn't refer me, or do but half a job last time I was here. How about doing your job properly in the first place so I wouldn't have any damn reason to come back?!
It feels like they all suffer from an inflated saviour complex, that if you're not if front of them with an arm hanging off or something equally urgent and immediately obvious, then you're not worth their time. If they can't puzzle it out in one or two visits, it doesn't exist. It's like trying to spell out "CABBAGE" on a sudoku page then angrily screwing it up and throwing it in the bin in a fit of rage. Then pissing on it so nobody else can have a go lol
Utter bastards. Like I enjoy sitting in front of them time and again just to be sneered at and looked down upon while I attempt to articulate, quite calmly and reasonably despite their haughty reception, what has upended my life without warning for the last several years, only to be interrupted and misinterpreted before they've even bothered to shut their own pompous mouths for more than three seconds. Like I would even choose to be in a room with these snotty fucks when if there was any chance I could avoid the bloody lot of them FOREVER, I would.
Tit holes.
If I wanted "attention" from anyone at all in the world it most certainly wouldn't be from this bunch of stuck up gobshites.
I know how I feel and something is fucked. I wasn't fucked, I was fine and happy and thriving, then suddenly I was, very quickly, very fucked. Either they've fucked me even further or I'm too fucked to get unfucked.
Either way, they can get fucked lol
So now waiting for yet more test results and the follow up consultation but already pretty much know how it's going to go. List of questions and requests at the ready; I will not simply take them at their word when they don me off this time and will insist on seeing the results and report myself (for it has recently been shown that as many as 50% of radiologist findings are not acted upon or relayed properly to patients). Preparing already to ask for a second opinion and further investigation from yet another doctor who will consider something else possible in their field instead of the one sole condition to which the current doctor is prepared… also, finally requested my full hospital records a couple of days ago for the last 10 years; this really is the very last push. Giving it everything I have to try to figure this shit out before finally giving up for good.
If I have to read medical jargon for weeks to wade through it all, google at the ready to translate and continuous coffee in hand to keep me awake, then so be it.
I've always said I'd take any of the
"Three D options":
Disappear (symptoms and pain, obvs)
Diagnosis
or
Death
…Being left with the outlier and far more torturous outcome "Limbo" was never acceptable and most certainly is not now after all this time.
Either I puzzle it out and find where they've failed or I've given my all and can then reasonably be allowed to bow out; either is ok by me. Then all I have to do is deal with the diagnosed disease or wait for my grandmother to live out her last days, choose a considerate time of year, sell my belongings and collect a certain amount of money for those final expenses so that nobody is too out of pocket when it comes.
There will be some sort of conclusion soon as I can't remain in purgatory forever.
Bad enough to endure all the physical symptoms alone but the invalidation and skepticism on top of it is insult to injury, salt and lemon juice in the wound.
As devastating as having my physical being crumble beneath me just as I began to tolerate and rise above all the emotional turmoil of my youth and young adulthood, and despite various seabed-scraping lows along the way, I truly feel that my mental health has never been better. I no longer feel beholden to my emotions, and others describe me as calm and level headed despite my ongoing medical issues. They still try to argue the toss that it must be "psychogenic" but that stance doesn't hold up under scrutiny - at least they shut up after a while now. I wish it was as easy to prove to the doctors who definitely think I'm either stupid, crazy or malingering.
Medical consultations seem but like cursory lip service; they're performed to appear like action is being taken but nobody actually listens to what I say. They make up their own narrative regardless of my side of the conversation, prompting me to audio record what is actually said in every appointment and then having to contest their version when I become aware of the way off piste story they've tried to spin. Symptoms are continuously shrugged off with unsatisfactory "explanations", both subjective and objective (never the two shall be considered together mind you), alarming test results that correlate with these symptoms presumed to be anomalous and "self limiting". Rolled eyes, sighs, ignored evidence and demented rationalisations that don't even make sense… Yet I'm apparently the crazy one lol
I know it's not the case but it's hard not to feel conspired against, especially when every doctor seems to have their mind made up before I even open my mouth; shrugging me off mid sentence with a sigh and obvious annoyance, not following actual procedure or writing anything down. The body language says, "You've had a couple tests and we didn't find anything conclusive so it can't possibly be in my field, must be something else, see ya."
I've spent weeks/months/years bouncing around between various specialists and some were good enough not to need to ever come back again. Yet the key ones who can measure all the visible, physical signs, ignore the obvious areas of diagnostic value that fall squarely under their scope, instead doing vague, cursory testing for one or two possibilities of many. Then get annoyed when I repeatedly find myself back in the same department because they can't consider every relevant condition in their field before impatiently sending me on too soon. And instead of them thinking, "Ok, so test results and symptoms have brought them here yet again, referred by a doctor who is pressed by written procedure to refer to me because of measurable, objective findings - what am I missing? After running one lot of tests last time and these yielding nothing useful, shouldn't we try different tests instead of THE SAME DAMN ONES AGAIN??" After common diseases and presentations are excluded, surely it makes sense to eventually consider less common conditions? I know Sherlock wasn't real but his quote that runs something along the lines of "when the obvious is excluded then what remains must be considered" is definitely logical and I don't see why it isn't applied in this case.
To top it all of, me seeing all these many specialists is somehow my fault. Dude, I didn't refer me, or do but half a job last time I was here. How about doing your job properly in the first place so I wouldn't have any damn reason to come back?!
It feels like they all suffer from an inflated saviour complex, that if you're not if front of them with an arm hanging off or something equally urgent and immediately obvious, then you're not worth their time. If they can't puzzle it out in one or two visits, it doesn't exist. It's like trying to spell out "CABBAGE" on a sudoku page then angrily screwing it up and throwing it in the bin in a fit of rage. Then pissing on it so nobody else can have a go lol
Utter bastards. Like I enjoy sitting in front of them time and again just to be sneered at and looked down upon while I attempt to articulate, quite calmly and reasonably despite their haughty reception, what has upended my life without warning for the last several years, only to be interrupted and misinterpreted before they've even bothered to shut their own pompous mouths for more than three seconds. Like I would even choose to be in a room with these snotty fucks when if there was any chance I could avoid the bloody lot of them FOREVER, I would.
Tit holes.
If I wanted "attention" from anyone at all in the world it most certainly wouldn't be from this bunch of stuck up gobshites.
I know how I feel and something is fucked. I wasn't fucked, I was fine and happy and thriving, then suddenly I was, very quickly, very fucked. Either they've fucked me even further or I'm too fucked to get unfucked.
Either way, they can get fucked lol
So now waiting for yet more test results and the follow up consultation but already pretty much know how it's going to go. List of questions and requests at the ready; I will not simply take them at their word when they don me off this time and will insist on seeing the results and report myself (for it has recently been shown that as many as 50% of radiologist findings are not acted upon or relayed properly to patients). Preparing already to ask for a second opinion and further investigation from yet another doctor who will consider something else possible in their field instead of the one sole condition to which the current doctor is prepared… also, finally requested my full hospital records a couple of days ago for the last 10 years; this really is the very last push. Giving it everything I have to try to figure this shit out before finally giving up for good.
If I have to read medical jargon for weeks to wade through it all, google at the ready to translate and continuous coffee in hand to keep me awake, then so be it.
I've always said I'd take any of the
"Three D options":
Disappear (symptoms and pain, obvs)
Diagnosis
or
Death
…Being left with the outlier and far more torturous outcome "Limbo" was never acceptable and most certainly is not now after all this time.
Either I puzzle it out and find where they've failed or I've given my all and can then reasonably be allowed to bow out; either is ok by me. Then all I have to do is deal with the diagnosed disease or wait for my grandmother to live out her last days, choose a considerate time of year, sell my belongings and collect a certain amount of money for those final expenses so that nobody is too out of pocket when it comes.
There will be some sort of conclusion soon as I can't remain in purgatory forever.
