I Hope You Get Officially Sick.

I have a friend who’s been aching for years. Her joints tend to skitter out of their sockets. Her skin gets overstimulated quickly, so sexytimes quickly curdle into needle-like pain.  And she has random storms of pain that just show up, sweep through her body, pull all the energy out of her and leave her wrung like a wet rag.

She still goes to school full-time. She still gets good grades. She still has a fulfilling romantic life.

But damn, is she swimming upstream, and occasionally – increasingly – those romantic moments are cut short by OW OW OW.

I hope she gets a syndrome soon.

Because the thing that nobody but chronically ill people can really understand is how little doctors often listen to you. They whoosh into the room, skim a chart, ignore the years of history of complaints to sit down and go, “So what’s bothering you?”  And because so many of them lack context, they’ll look at these skirls of symptoms, ignore half of what you say, and devise a treatment on the spot that ignores years of past history because they heard “joint pain” and shrug it off as arthritis.

Or, worse – and particularly if you’re a woman – they’ll decide that this is “drug-seeking behavior,” tell you that you don’t need pain medications, this is just something you’re making up.

Actually, a lot of doctors will suspect you of making it all up if your symptoms don’t point them to a clear conclusion.

This is not to say all doctors are bad, but all doctors are harried and busy, and too many of them take shortcuts.  Which is why I found myself hoping that my friend had a condition called Ehlers-Danlos Syndrome, which can actually be fatal.

Not because I wanted her to die sooner; no, I want her to have a good long life. But the minute you can condense your symptoms into a singular diagnosis, and have That Phrase on your sheet, it’s like getting upgraded to first class on the airline. Suddenly, doctors have to agree that you must be taken seriously – sure, you’re in the exact same amount of pain you were in before, but they can’t hand-wave it off.  When they see That Phrase on your chart, they actually stop and read back to see what they were missing, because That Phrase makes you somebody important.

…or not. The thing about That Phrase is, once you get it, you find exactly how often doctors actually don’t read your chart.  Sometimes you have to remind them That Phrase exists, and is all over your goddamned medical history, and yes you need drugs for it, no you don’t want to adjust treatment, you have something that works for you now, a combination of chemicals that allows you to mimic a functioning human being for a couple of weeks, and then you have to fight with your physician to find how this all works.

When my Uncle Tommy was near the end of his life, I wanted him to move out to Ohio with me, so I could take care of him. He refused. “The doctors here know me,” he grumbled. I thought that a trivial complaint when I was twenty-five and stupid, but the older I get the more I understand what he meant: he’d grown up in Connecticut, lived there for fifty years, was famed in the community for being a hemophiliac and a hepatitis patient.  He never had to argue with anyone to get the drugs he needed, never had to explain his condition to some fresh-faced doctor, and on the rare occasions he did a nurse would swoop in to correct the new boy, this is Thomas Lucas, you should know him.

It says something about our medical care system that even though Tommy had good insurance to pay for everything, he was terrified to move lest he literally die from a case of incomplete information.

And there’s all sorts of reasons for that, from the welter of miscellaneous patient records to HIPAA privacy regulations, but the truth is that for people who have chronic conditions, they frequently find themselves as the only repository of valid knowledge – battling with endless waves of amnesiac doctors to tell the professionals what didn’t work last time and won’t work this time.

Which is why if you get sick, I hope you get officially sick. I hope you get That Phrase. Because That Phrase will be your shield against poor medical treatment, like a cross to brandish at vampires – it might not force them to flee, hissing into the night, but That Phrase will at least get their attention.

Without That Phrase, you risk being reduced to a whiner, some needy patient who shows up at the office three times a month because, I dunno, you’re lonely or something.

And if you’re not chronically ill, I ask you to take a moment to think about how ridiculous it is that getting an official diagnosis is a moment of celebration – sure, you’ve discovered your collagen proteins are collapsing like limp spaghetti, causing your shoulders to spontaneously separate!  You may die!  But it’s so much easier from now on, because even though your body’s collapsing, you’ve just gotten a diagnosis that gets doctors to agree that you actually have a problem.

Then ponder what it’s like for people with the exact same problems who don’t have The Diagnosis, and think about how awful that is for them.

That’s all.

4 Comments

  1. NC Narrator
    Apr 16, 2015

    My son has Ehler’s Danlos – we discovered it just before he entered college, and thankfully it’s the mild version. I apparently gave it to him. No one ever had a name for why my joints just like to move around a lot, they just did. I was flexible. In my son, it manifested with the wiggly joints AND super stretchy skin. He can grab the skin at his neck and pull it out about 6-7 inches. It’s more than a little gross, actually.

    For my entire life I’ve had this weird little constellation of problems. And for all of my adult life I’ve listened to doctors tell me that they’re all in my head. It took one awesome doctor and one really pissed off me to figure out some of what was causing my problems.

    The incredible stomach pain that was all in my head for over a decade? Gall stones. Horrible little stones that form in your gall bladder – which is not, BTW in your head. My gall bladder was evicted forthwith.

    The weird fact that I can seriously go all day without eating and never feel hungry? Turns out my stomach is paralyzed, so anything I eat hangs around for hours and hours and hours.

    Before the final AH-HA! moment, I’d gotten to the point that I avoided going to the doctor at all. No matter what kind of pain or discomfort I was feeling, I just didn’t want to face that pat on the head and there’s the door again.

    We went through basically the same thing with my youngest son before we FINALLY got his Autism Spectrum diagnosis.

    That simple little phrase changes SO much.

  2. Mighty Minion
    Apr 19, 2015

    Amen.
    I’ve had low thyroid for 15 years before I found a Doctor willing to order the 3 blood tests to test for it… After that I had to try 2 doctors before I could get back on the trip. I’m terrified that Ill go of it again because of a lack of good doctors…
    And this drug isn’t addictive, and will just make some one feel crappy if they don’t need it.

  3. Gayle
    Apr 20, 2015

    One problem I have found with The Phrase – when your diagnosis is something some doctors DON’T BELIEVE EXISTS. I have fibromyalgia – I fit all the descriptors, I have all the symptoms, I got my diagnosis from one of the top rheumatologists in the country – but I have been told I’m a crazy, drug seeking hypochondriac by doctors who don’t believe fibro is a valid diagnosis. Therefore, all this debilitating pain? Either I’m making it up, or I need a shrink. I totally understand Tommy’s point – I’ll never change doctors, now that I have one that gets it.

  4. trin1066
    Jan 17, 2016

    Sometimes though, at least in the case of my Fibromyalgia, is that any NEW pain or dysfunction gets written off as “it’s just something that comes along with the Fibromyalgia…”

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