The basic facts:
- I have this genetic condition. So I’m 4’7″ yes you read that right FOUR FOOT SEVEN INCHES. I’m 46 yrs old as of this writing.
- I have given birth four times
- three of the four were necessary c-secs
- I also suffer from a fun form of Herpes in my spinal fluid. That would be not such a big deal except what they don’t mention is that sometimes it can progress to a near-fatal form which I actually did have once.
TONIGHT WE ATTEMPT TO DISCUSS FACT NUMBER ONE
Growing up with a genetic condition that makes you look like alien from the planet bizarro-dwarfland (my features are the opposite of formal Dwarfism: short trunk, normal limbs) means every time a medical person even gets near me I am subject to a barrage of questions all designed to satisfy their curiosity. Being as I inherited this condition from my father who is hale and hearty as we speak, it clearly poses little, if any, medical problems. Sure there’s practical problems galore (most of which have to do with just being super-short) but oddly enough, they never ask me about the practical problems of being a walking freakshow OR being super-short. Some people like to make jokes which I generally ignore or grit my teeth and bear. Not because I’m so super-sensitive about being small but because trust me, by the time I was 13 I’d heard it ALL. Being 46, now I’ve heard it all at least ten times.
But hey, why not share? First, the secular questions in order of popularity:
- “what’s WRONG with you?”
- “what HAPPENED to you?”
- “YOU’RE SHORT!”
- “are you a midget?”
- “wow, I really dig short women”
The creativity alone just knocks my socks off, right? Now you know why I have a FABULOUS eye-roll.
Now the medical questions:
- “have you ever been screened for scoliosis?”
- “turn around and touch your toes”
- “can you move your neck?”
- “does it hurt when you move?”
- “so have you ever heard of Klippel-Feil?”
Now, you may think all of those things are innocuous. But how innocuous would you feel if you were in an urgent-care clinic trying to get an x-ray of your HAND because you thought your wrist was broken and before the tech will set up the x-ray machine some PA starts barking at you to touch your toes and let him thump on your spine? Yeah, not so much. Especially when you’re in your 20s and have been getting spinal examinations since you were born. Not so innocuous. But people who have physical deformities develop a certain lassez-faire about being interrogated by medical personnel. We also develop a certain aloofness about strangers accosting us with dopey questions. At least strangers are trying, in a very inept and awkward way, to gain some understanding (well except for those Romeos who try to win my heart by telling me they love short women but we’ll get to that later) we can forgive that; everyone has curiosity and how DO you go about gaining understanding of something so incredibly outside of your world without sounding dopey? We understand. We may not always be in the mood to tolerate the lumbering fool who interrupts us when we’re out having dinner with friends to scream “OH MI GAHD YOU ARE SO ADORABLE!” but we do, under it all, understand. In stumbling forth and saying goofy things (that are often regretted right away, much to our amusement) strangers are attempting to humanize what seems so inhuman. They are trying to put a person behind that strange physical presence. That’s why we try to be patient and tolerant. That’s why the best question to start off with is “hi, what’s your name?” (at normal volume, please)
Medical personnel, yeah not so much. Yes, I know they are curious too, probably even more so, but their curiosity is not an attempt to humanize us. Their curiousness is quite the opposite: it is an attempt to label and categorize us which is to say, dehumanize us. Medical personnel will go out of their way to start grilling and interrogating in order that the outward physical form they are so curious about can be studied and dissected (mentally) and labelled properly and added to their store of objective knowledge. So one develops a very different attitude when dealing with medical personnel than with strangers. I understand curiosity, both personal and professional and I most times will try and answer the questions barked at me. In many cases, I know the medical person has a job to do and they don’t and can’t know that I’ve answered those same damned questions at least twenty times a year every year since I could talk. It’s at best tiresome, but I can handle tiresome. So when it’s in the course of dealing with medical issues (which as you can see from the above facts, I’ve been picking up over the years much like I collect Star Wars paraphernalia – just a lot less fun) I will listen to and answer the basic questions. Sadly, most medical personnel are not satisfied with just the basic questions. Which would be fine in many cases.
However, when it comes to medical anomalies such as myself, they do not observe professional boundaries. The example with the urgent care PA bursting in on my x-ray is only one such instance. I could not begin to count the number of times I have been accosted by medical people who had absolutely nothing to do with me, my medical case or my current medical crisis and expected to achtung! to their orders no matter who they are because they are, after all MEDICAL PEOPLE and it is my job as a patient to answer every question they can think to toss at me. It does not matter if they happen to be walking down the same hall as me or if they happen to be a proctologist visiting his pal who specializes in eye-surgery; if I am there and they see me, they get to ask questions and order me around. It’s as if my mere existence in their visual field is sufficient permission.
…That’s the ones who at least have the wherewithal to interrogate me.
Others, simply make their assumptions and put them in my record without knowing anything about me or speaking two words to my face.
Another example: I was pregnant with my first child. I was nervous, as any expectant mother, but I was not particularly worried about my condition or being pregnant. My family physician who I had known from age 8 had assured me when I was a teenager “don’t worry, you have plenty of room to carry a baby like anyone else. The body makes room. You will be fine” and to doubly reassure me, she found some obscure medical texts of some women in Europe with the same condition who had given birth.
Well I was in a practice that primarily used midwives. On my third visit, the midwife told me I needed to meet with their supervising doctor, all perfectly normal, nothing to worry about everything was fine. But I wasn’t so sure. You see, the midwife had never, not once, asked me what my condition was. And that was damned odd. But not entirely unknown either. At that point (I was 24) I knew what that probably meant: she had already decided she knew what my condition was and wasn’t sharing her conclusion with little ole me. Considering I had never met this woman in my life before I got pregnant and I had only moved to that state two years prior, I figured it was highly unlikely she had any records or whatnot from my family physician. Especially considering they never asked me for releases.
So one visit, I was waiting for my midwife and I opened the exam door, grabbed my file from the folder on the wall and started reading it.
Wow. There were in total 15 pages written up by two different midwives about me. And none of it was true. It was all conjecture on their part. There was only one or two recordings of my visits, everything else was their supposition about my condition. None of which had they discussed with me. None of it. And mostly, it was all wrong too.
So when the midwife came back, I let her have it. I blasted her up and down and threatened to rip the file to bits. I threatened to walk out of their clinic. I threatened to have my baby in a hotel room. I threatened to call the Local news. I scared the holy hell out of her.
That story ended well…. eventually. There was the whole meeting of the supervising doctor, who wanted to schedule my c-section right then and there despite my protests. There was the firing of that doctor and our decision to hire a midwife of our own choosing. There was the hospital HR woman who begged me to fill out multiple complaint forms since that doctor had a reputation of being a horrible asshole. Then there was the visit we had after my NINE POUND son was born by NATURAL childbirth and watching that doctor and the old midwife grit their teeth as they smiled at us.
…yeah, some stories have good endings.
But most of my stories unfortunately end with me screaming at someone and walking out. OR me gritting my teeth and putting up with someone treating me like an amoeba in petri dish because they had some medical knowledge or expertise I needed to utilize once they were done barking questions at me and thumping on my spine while I touched my toes. Such is the life of the physical freak with an “orphan” disorder. Yay. You get used to it. Kind of.
I will interject here one striking difference: Nurse. And I mean Registered nurses. Aside from the nurse-midwife I mentioned above (and I don’t know that she was an RN, I strongly suspect she was not) RNs have always been nothing but wonderful and respectful of me. Sometimes they ask me about my condition, sometimes they don’t. Sometimes its because they have to and sometimes its because they’re curious. They never pretend its one when its really the other and they are always so very human about asking. I love every RN I have ever dealt with. Really. I don’t know why, because I’ve had LPNs who weren’t so kind. I’ve had PAs I wanted to strangle. I’ve had basic techs who could not be respectful if you stuck an IV in them and pumped them full of oxycontin and phenergan. Some people are just rude and joyless. But every single RN I know of has been wonderful.
So now you know why I hate doctors and am very suspicious and wary of all medical personnel, except RNs. God bless RNs.
Don’t worry I’ll hit this subject again. Good night.
I love this journal entry! You’re a very good writer, as I’m sure you know!
(Ha ha, I love to sound like a spambot)
Nurses are awesome. Except that one nurse.
Why did you have to have C-sections? My youngest sister had to with her son but is pregnant with another baby and really wants this one to be VBAC.