There is no magic cure, no making it go away forever. There are only small steps upward; an easier day, an unexpected laugh, a mirror that doesn't matter anymore.
Laurie Halse Anderson
I knew from the moment she walked in the room that she wasn’t going to help me. I knew by the way she looked at me - a mix of downward scrutiny and trepidation, gift-wrapped in a shiny layer of self-righteousness that could easily be mistook for clinical professionalism.
For the sake of preserving this doctor’s identity, because I don’t believe in an eye for an eye, let’s call her Dr. Ignorance.
Like so many doctors before her, Dr. Ignorance took one look at my medical records and swiftly tossed my credibility out the window thanks to that 8 letter diagnosis that’s haunted me since childhood.
Anorexia.
Or Anorexia - Nervosa (Restrictive Type), if we want to get specific.
See, in the Summer of 2017, I began experiencing severe pain in my abdomen.
The following year of my life looked a whole lot like monkeys playing catch with a banana.
The banana was me. The monkeys were doctors.
I had every test imaginable - Ultra Sound, Endoscopy, CT, MRI, SAT, ACT and even one called a Stomach Emptying Survey where I had to eat radioactive eggs and spend a day at the hospital to have images taken hourly of said radioactive eggs as they made their way through my mutilated digestive system.
I was sorely disappointed when the radioactivity didn’t grant me super powers, but I can report they did give me the worst gas imaginable.
Each test came back with more puzzles and every doctor’s visit ended with a frustrated doctor sending me away with a referral for another doctor who also couldn’t help me.
24/7, I felt like I had a knife in my abdomen. With any movement that engaged my abdomen or diaphragm, the knife became a machete. And every time I ate, the knife became a chainsaw.
To the doctor’s small credit, when someone with anorexia complains that it hurts to eat, that can be confusing. But I assure you, dear doctors, that nobody with anorexia who’s actively in their disorder would make excuses to do sit-ups.
During this season, I woke up each morning knowing that the day was going to be painful. And the fact that eating hurt worst of all seemed like a sick joke for someone like me who’s already fought a life long battle with food. But hope is a powerful thing, friends. Underneath the black haze of depression and anger, remained a quiet spark of hope. At the time, I didn’t know it was there.
Things that small can only be seen in retrospect.
Something inside me chose to keep fighting. With a fork. Against a chainsaw.
Every time I ate, I was Lieutenant Dan in the crow’s nest during the hurricane, screaming at the sky, “IS THAT ALL YOU GOT? IF YOU’RE TRYING TO KILL ME, WHY DON’T YOU JUST DO IT? I DARE YOU!!!!”
Except I kept my shirt on.
And, here, on a sunny Wednesday morning, Dr. Ignorance had the audacity to give me that look.
After I provided a brief summary of my puzzling symptoms, none of which she listened to, Dr. Ignorance cleared her throat and said, “I can’t help you with your… eating problems. That’s not what we do here.”
I felt myself shrinking under her tone. “And just what ‘eating problems’ are you referring to?”
She pushed her fingerprint-stained glasses further up her nose, annoyed, and replied, “Your eating disorder.”
Hot tears began to surface. Then something inside me snapped. Something that believed for a fleeting, fearless second I didn’t deserve to be belittled.
“In case you have any other patients with eating disorders, I want you to know that its incredibly disrespectful for you to automatically discredit me because of my disorder. We’re human beings. And we deserve to be treated like human beings.”
At first she was silent, gawking at me with her jaw ajar. Then she squirmed and muttered a jumbled apology, obviously already reading the 1 star review I was mentally composing for her google profile.
I’d love to say I felt like a badass for standing up for myself, but I cried the whole way home.
There is a severe deficiency in understanding when it comes to eating disorders. And since it is human nature to fear what we don’t understand, doctors see ‘eating disorder’ on a patient’s records and read ‘liability’. This lack of adequate understanding automatically makes us dangerous animals.
Who knows? We might do something crazy like eat a leg off the examination table and puke if back up before dear doctor’s very eyes.
A mental illness that literally turns the laws of nature on its side by forcing us to starve ourselves or engage in a number of other equally unnatural eating tendencies is confusing. Oh, and by the way, the root problem has nothing to do with eating. The ‘eating’ in ‘eating disorder’ is merely a side effect of something deeper… Cue further confusion.
After my visit with Dr. Ignorance, I was tossed around to a handful of other doctors before giving up. I was through with being treated like an idiot and resigned to live in chronic pain.
Through the grape vine, my beyond last resort came in the form of a highly recommended physical therapist. She specialized in some sort of voodoo called, visceral manipulation and had experience with unusual cases.
I went to the consultation with my guard up, expecting to get thrown in the trash again. To my surprise, she listened to my odd assortment of symptoms with interest (not annoyance) and replied with, “I’m not certain what’s wrong with you, but I have a hunch. And I’m going to stick with you until we figure it out.”
I cried on the way home from that appointment too. But for different reasons. I cried, because I was so taken aback, after so many beatings, that someone would be willing to take me seriously.
Since then, I spent months going to PT twice a week for visceral manipulation. The diagnosis she arrived at was an issue that commonly occurs in individuals with anorexia.
If you went months or years without using your legs, the muscles in your legs would atrophy which means they’d essentially stop performing the normal functions they were made to perform. Well, when you have anorexia, and you go years without using your stomach on the basis in which it was made to be used, your stomach can atrophy. So can other organs, because most organs participate in energy processing and are thus fueled by your food intake.
This is why when someone severely underweight first arrives in ED treatment, they aren’t allowed to eat large portions upon immediate arrival. Doing so is incredibly dangerous, because it could result in a heart attack or organ atrophy when your body isn’t used to having to process normal amounts of energy.
Stomach and organ atrophy in individuals with anorexia is a prolonged problem. Years of starvation and enormous amounts of exercise weakened my insides to the point of exhaustion. The pain was a result of trying to force my insides to do things they no longer had the strength or even instinct to do - something as simple as digest food.
Since this diagnosis, twice a week, my PT performed visceral manipulation which can best be described as reteaching my organs to do their job. The way in which that’s achieved is a bit graphic so let’s just refer to it as organ voodoo.
Ultimately, before being led to this PT, I’d reached rock bottom.
A place I frequent so often, they gave me a key.
But my life was given new light purely because I sought one last attempt at help and someone was willing to see me as a human being rather than an inconvenience.
And really, my physical therapist has changed my life.
Now a days, I live with a functional amount of pain that allows me to pursue the work I love. Because my stomach doesn’t operate the way a normal stomach works, my diet is very limited to what I can and can’t digest, but I’m happy to live off mud for the rest of my days as long as I can chase my calling.
Let’s call this a cautionary tale for two audiences.
Audience number one: my ED comrades. Don’t be me. When you have an eating disorder, everyone and their mother will warn you about the catastrophic health consequences of mistreating your body. And you sure as hell won’t believe any of them, because it won’t happen to you. You have everything under control, right?
Funny, that’s exactly what I thought too. And, sure, I went years evading the inevitable, but everything catches up in the end. Our bodies are more fragile then we'd like to think.
Audience number two: doctors, anyone and everyone who’s ever made negative assumptions about someone with an eating disorder.
What you need to understand is this:
Every time we’re made to feel ashamed, we stay silent.
And every time we stay silent, ED wins.
And as long as ED keeps winning, eating disorders will continue to have the highest morality rate of any other mental illness.
Though it may be difficult to understand, those of us with eating disorders don’t choose to do what we do. Trust me. We’d give anything to be able to have a normal relationship with food. With our bodies. With our minds. With other people. And we’re just as responsible for our disorders as a cancer patient is for their illness. Nobody shames cancer patients and therefore nobody has the right to shame us.
We didn't ask for this. We didn't choose this or cause it. We were born with it.
