I remember sitting in class my first day of Biometry (“Statistics of Biological Systems” was the formal title. The Engineers on campus called it “Math for Bio Majors”).
The professor looked each of us in the eye and said, “You can use statistics to justify anything, so use it wisely.”
Maybe it was the 8:00 AM hour—and my late scramble across campus denying me a quick caffeine grab—but that statement destroyed and opened my world in the same breath. All of those numbers news anchors trotted across the screen meant, effectively, nothing? Or everything? And there was no real way to know the difference?
(Okay, so my ACTUAL thought process was more along the lines of, “Holy shit! I can use math to prove my stupid research projects aren’t abject failures? Where was this knowledge the last fourteen years of my life?!” It was first thing in the morning)
Without knowing it, that professor had handed me the key to the Universe. For the first time, I saw the potential behind percentages, ratios, and reported values. My shaky relationship with math—so solid in our Geometry phase but utterly destroyed when letters and symbols suggested a threesome—rebounded.
I was a master of destiny: 100% guaranteed. (And I had the calculations to prove it!)
All of which is to say, take these values with complete assurance of their accuracy. Or, you know, with a heaping grain of salt. (The choice is yours)
9.6% of disabilities are VISIBLE. (That’s around 5.8 million out of 61 million spoonies—out of 333.3 million people in the U.S.)
When I had surgery on my right ankle (tendon and ligament repair), they put me on a knee scooter for six weeks. (Calm down—it’s nowhere near as fun as it sounds) Bright red, shiny, moderate maneuverability, with a cute little basket in front but no handy bell or horn to announce my arrival or warn obnoxious pedestrians to get out of the way. Also, the wheels weren’t that adept at going off-roading. Or running people down.
But people—even those who couldn’t be bothered to move aside or hold doors—saw me. Something about a grown-ass woman tooling around on a scooter tends to draw the eye. More so than the bulky plastic boot propped on the seat, colorful socked toes wiggling in the breeze.
(And, yes, you better believe 99% of those people feel the need to ask to BORROW your scooter so they can try it out…inevitably crashing it into a wall or skidding out of control and sliding across the floor/sidewalk/parking lot)
I hated the damn thing and the limits it placed on me: No stairs, no driving, no escalators, no pools, and certainly no dignity. But I loved being seen and acknowledged as a dysfunctional human being for the first time in my life. No one questioned my inability to run across the room, lift a 100-pound dog on my own (what? You think they didn’t still expect me to help? Ha!), or carry equipment boxes throughout the clinic. The scooter made my limitations visible, speaking in an eloquent—if embarrassing—way that I’d never managed.
Now, 100% of my co-workers bitched about my “laziness” when they thought I was out of earshot. They complained I was “abusing my privilege” by “tootling around” on the scooter. (Nothing like signing up for an elective orthopedic procedure just to get out of work, am I right?) And people hissed that I wasn’t pulling my weight. As if I should be able to pop a Saint Bernard in my basket. But they made a vague attempt to keep such comments out of my direct line of sight.
And then piled all the weighty tasks back on my plate as soon as the scooter failed to make an appearance at work.
Brain fog has increased 25% in…people who aren’t…you know—little small things.
“Hand me the pointy thingie.”
“Do we have any more of the wet cleaning stuff?”
“Have you seen Annoying Morning Girl?”
Vague language was always part of the lexicon at work. We worked excessive hours under stressful conditions with worse than criminal standards. If I managed three gulps of water and a bite of sandwich in a sixteen-hour shift, it was a banner day. Most weekends, I barely managed to find ten seconds to lock myself in the bathroom to pee. Expecting my brain to remember words like “scalpel,” “KennelSol,” and “Amber” was too much.
Hell, without my name tag attached to my chest, I wouldn’t have been able to scrounge up who I was!
98% of us walked around using a combination of pantomime and word substitutions. (The other 2% tended to stand and gape like fish until someone engaged their psychic abilities and figured out what they wanted) And the later in the day or the longer the string of shifts, the worse it got. I remember one weekend where we literally devolved into grunting and pointing. (There might have also been some shrieking and throwing of varying things; I’ve blocked most of those episodes from my brain…or might have lost the memories entirely at this point)
But words weren’t supposed to slip away when I switched from the chaos of the ER floor to the relative calm of Cardiology. Maybe I needed to stay late a few nights a week to finish typing notes or follow up on some phone calls, but that wasn’t the norm. And while my nourishment only upgraded to a hasty breakfast and two bites of lunch, I usually managed to sneak a few more sips of water throughout the day. There were at least two of us in the office, allowing for reasonable bathroom breaks and a split schedule that didn’t include weekends. (Exempting the ER shifts I stupidly continued to sign up for)
I was still stumbling over my words, though. To the point of sounding like a random person they’d found on the street and dressed in scrubs.
The vocabulary, the knowledge, existed in my brain. When I closed my eyes, I saw the pages I’d studied in school, the diagrams I’d poured over in preparation for my promotion. Sitting at home on my bed, I could run through the anatomy and disease processes without a problem. I knew every valve, blood vessel, and step in the body’s breakdown towards congestive heart failure. My brain’s memory worked as effectively as ever.
Until I sat in front of our doctor and uttered the words, “The gate thing…on the left…it starts with a letter like ‘left’…not ‘l’ but close.” Tears filled my eyes. “Please don’t fire me.”
10% of women (>176 million of the female population of the world) have endometriosis.
Working in an ER, I have nearly limitless patience for urgent, emergent, and critical care. Maybe my background was veterinary; doesn’t matter. I understand what it’s like to watch a dying body hit the door and turn the treatment area into a shitstorm in the space of two seconds.
Even four years later, I remember the rush of adrenaline of trying frantically to place an IV catheter as blood pours onto the floor, counting out chest compressions and swapping out because you are physically exhausted from attempting to keep blood flowing a dead heart, scribbling down drug amounts and time as you watch the clock tick away precious seconds, and having to step away from a table because all your efforts came to naught. I hear the sounds that defy description as someone hears their beloved family member (I dare you to tell me a pet is anything else) is gone ring in my ears in the middle of the night.
While Karen in the lobby screams that her chihuahua (I don’t know why it was always a chihuahua, but it was) with the broken toenail is getting ignored.
In the throes of my worst pains imaginable, I have never shrieked for attention, pressed call buttons, or yelled at a doctor or nurse. (No matter how much they deserved it)
Not when nursing students attempted to place IVs where veins don’t exist. (I did mention the fact after, and probably destroyed his confidence forever, but I can live with that) Not when an idiot man asked me for the sixth time if I was positive I wasn’t experiencing menstrual cramps despite my telling him (repeatedly) I’d had a hysterectomy. And not even when a doctor decided she needed to push on my very obviously swollen and infected surgical site for…I don’t even know the reason.
I know what it’s like in their shoes, so I’m as good as I can be.
There are ZERO tests for endometriosis.
That bitch is invisible on all visualizing modalities: CT, ultrasound, even MRI. You can have the biggest rat’s nest infestation in the world waving at the radiologist, and they’ll never see it. Doesn’t even cause a blip on any labwork an ER doc cares to run. Unless a doctor is keen enough on female health, or savvy enough to read the medical record that (supposedly) follows you everywhere, or smart enough to listen when you’re providing your complete medical history (so. Many. IFs!), it will never cross their differential diagnoses list.
Instead, they will conclude you’re a typical hysterical female in need of psychological counseling (or medication—or both!). And they’ll advise you of such.
Ignoring the fact you can’t stand upright. Or keep passing out from pain.
When the second ER doc told me to see a psychiatrist, I lost all patience and decorum. My “behave for their sake” mentality went out the window. Maybe I knew what he was going through, but—for once—I needed him to care what I was going through. I mattered. I was going through hell each day. (To this day, my father reflects with amusement on the tirade he was privileged enough to observe)
Security escorted me out of the hospital.
True statement: 99.99% of ER doctors are assholes when it comes to endometriosis. (I don’t need a statistical equation to figure that one out)
>40% of patients referred to specialized pain clinics have fibromyalgia.
No one questions when an animal is in pain.
Actually, that isn’t true. About 60% of owners gave me a funny look when I quoted them the cost of pain meds for a surgical estimate. Most changed their mind when I asked if they’d like to undergo surgery without anesthesia. (I learned to steer clear of dealing with those who didn’t…and was reprimanded for suggesting we put a police watch on them as a potential serial killer)
I worked in veterinary medicine during the animal-pain revolution, though. Clinics and conferences alike revised pain charts, medications, and protocols to keep dogs, cats, horses, and everyone else as comfortable as possible. Patient Notes always included a space for observations related to pain: Was the animal shivering? Did it show a change in temperament? Was an affected limb extended? Could you see a hunched posture? Were they vocalizing? Were they quiet? All of us became adept at spotting cues that indicated a shift from one phase in the protocol to another.
No one ever wanted a painful patient.
But people (smart people; people who aren’t idiot owners influenced by what they see or read in the news or overhear in the latest garbage dump from YouTubers who think they’ve solved the world’s problems with sunshine and turmeric) understand that animals don’t become addicts.
A dog undergoing a CCL (cranial cruciate ligament surgery; the knee) needs to remain comfortable following the procedure and while they’re being sling-walked. As they recover and start walking again, though, the muscles stretch and calm down, and you taper down the dose. By the time you stop it, the dog is back to normal and doesn’t go hunting through cabinets in search of a fix.
Veterinary medicine doesn’t hold a pill bottle over a cat’s head, squinting at them as they limp across the table and say, “Are you sure you’re struggling to jump on the couch, Fluffy?”
Which is good because, unhappily, 14 million dogs and 90% of the cats in the U.S. develop arthritis as they age. And that doesn’t touch the number of pets undergoing surgical procedures (Newsflash: ALL of which fucking hurt!).
Swap over to human medicine, though, and it’s an entirely different script.
Self-reporting of my pain (which is how it’s done, because humans are incapable of watching for cues and behaviors) is never believed. I don’t even know why nurses or doctors bother asking me to rate my pain. Never mind that the traditional FACES pain scale doesn’t work for people with chronic pain, it’s become nothing more than a checkbox on an intake form, as useful as the address or phone number. (Do you honestly expect me to believe they don’t know where to find you to extract your money? Give me a break)
Those who know me see the evidence of my pain.
The words that come out of my mouth are always, “I’m fine.”
But my eyes squint, bringing out the natural creases on the sides of my head that I lovingly refer to as my “Don’t fuck with me” lines. My lips press together (mostly because I’m gritting my teeth together so hard I’m surprised I haven’t worn them down to sand yet). I grip surfaces around me tight enough to blanch all the blood out of my fingers. I move so slow a dead snail could outpace me. My body naturally curves around whichever part happens to have won the Screaming Nerve of the Day Award. And my temper is on a hair trigger so every other word that comes out of my mouth is a glorious painting of profanity. (Assuming I haven’t progressed so far that forming sounds is beyond my capability)
Because I fucking HURT.
The signs are blatantly obvious. If someone looked at the chart in a veterinary hospital, they’d go running for the big-gun drugs, a cushy fleece blanket, and an extra pillow. But in a human hospital? They roll their eyes and tell me to, “Suck it up,” or “Stop exaggerating.”
Human medicine is supposed to learn from veterinary.
Hell if I know where this particular disconnect went off the rails.
What’s your favorite invisible illness statistic? What number absolutely BLOWS your mind when you see it? Hit that button and share!
Do you know someone who could use a laugh? Or sympathize with this glorious (I said it, I meant it) piece of writing? Then hit that button below! We’re only as invisible as we let ourselves become!