Before Being Labeled With An Eating Disorder

I can trace my descent into chronic illness all the way back to age eight.  Up until then, I was actually a healthy kid.  Until then there was no mention of hospitals, tube feeding, IV nutrition, terminal illness, or unrelenting pain.  None of that.  Back then there was no talk about me having an eating disorder.

More Than An Eating Disorder: The First Signs of Trouble

The first sign of any issues occurred in third grade when I began suffering from frequent pounding headaches.  Another early sign of something amiss was how dry my body was. If I went a couple of hours without sipping on a drink I could put a finger in my mouth and move it around, and my entire mouth would be bone dry.  My skin began to get very dry as well, and I noticed something odd, I no longer could sweat, no matter how hot the temperature was.  Even my eyes were super dry to the point where it made my vision blurry.

From kindergarten to the first part of fifth grade, I attended a private Jewish day school, where every day began with a morning prayer service.  The Orthodox Jewish Prayer service consists of multiple parts where you remain standing for prolonged periods of time.

An Eating Disorder Can’t Cause Neuropathy

Also starting in third grade, it became an intense struggle for me to remain standing.  My exhaustion threatened to sweep me off my feet and knock me out. It was so bad that I couldn’t focus on the prayers in the Hebrew prayer book. My feet would ache, go numb, and tingle from standing for ten minutes straight.

Everyone else prayed for peace, happiness, healing, and safety. Instead, I would find myself praying for the service to be over. All I wanted was to sit down and remain sitting.

The Symptoms That Led to an Eating Disorder Diangosis

The symptoms that caused the most trouble also started at age eight.  At first, I was just rarely hungry anymore.  Then every time I ate or drank at lunchtime severe nausea and pain flared up, then I would puke up everything I ate.   Finally, I stopped eating lunch at school to avoid the accompanying pain and nausea and avoid puking my guts out in the bathroom afterward.  There was no desire to lose weight attached to it. But everyone tried to pin that on me.  They insisted that I had an eating disorder.

“Why are you coming home with full lunchboxes?” my mom asked me.

“I can’t eat lunch, it makes me sick,”

My mom took me to Dr. Monroe, my pediatrician.  She listened to my stomach and pressed on it in a few places. I yelped in pain.

“There’s nothing wrong with her stomach,” insisted Dr. Monroe.

 “I think this is either an eating disorder or some sort of behavioral issue,” she whispered to my mom, not realizing that I could overhear.

The Food Police For an Eating Disorder That Didn’t Exist

After my pediatrician dubbed it an eating disorder or behavioral issue, my mom became the food police.

Sometimes on the weekends, I would try to force myself to eat lunch.  The only reason I did it was to get my mom off my case. Every time I tried to eat lunch my mouth would start watering.  The waves of nausea would start pouring in.  My stomach would start dry heaving.  Then no matter what, I would have to run to the bathroom and throw up. 

My mom called this, “Working myself up,” or “acting like I had an eating eating disorder again”.

Back when I was eight, I could still handle eating breakfast, dinner, and an after-school snack. This meant my mom wasn’t as convinced that I had an eating disorder, and she wasn’t as worried. Her food policing was tolerable at first.

Hammering in an a Misdiagnosis of an Eating Disorder

Then summer rolled around and the end of third grade. I turned nine over the summer and had my nine-year-old check-up.

“She’s 45 pounds and 4’2 at nine years old, that means she fell off the growth chart for weight. For height, she’s in the fifteenth percentile and barely hanging on.” Dr. Monroe informed us.

 My mom chimed in that I was still refusing to eat lunch.

“I don’t even know if it’s safe for her to keep doing gymnastics practice and competitions,” my mom added.

A preteen gymnast on a high-pressure competitive team, refusing to eat lunch.  

Dr. Monroe immediately hit me with a barrage of questions to the tune of, “Was I trying to lose weight?” “Did I think I was fat?” “Was anyone else on the team on a diet?” “Did coach make any comments to me about my weight?”.

It wasn’t like she hadn’t already assumed I had nothing wrong with me beyond an eating disorder.

Not once did the pediatrician ask me why I wasn’t eating lunch. She didn’t ask me if my stomach hurt, or if I was getting nauseous. Instead, she threatened me.

“In six months, you need to come back for another appointment. If you’ve lost any more weight, then you will have to stop gymnastics.”

A Desperate Attempt to Stop the Food Police

Six months later not only could I not tolerate eating lunch, I had also stopped stomaching after-school snacks as well. My parents were constantly on my back because I had “an eating disorder.”

Out of pure desperation, I had grown manipulative.

At school, I would open up the lunch bag that my mom had packed for me. Then I would pull bite-size pieces out of the sandwich. I would toss those pieces in the trash until I got down to the crust which I never ate. Then I would put the torn-down crust back in the plastic baggie in the lunch bag. It would end up looking exactly like I had eaten the sandwich.

After that, I would dump some snacks in the trash. Of course, I would leave some behind so that it would look like I had eaten most of the snacks. Then I would do the same thing with the drink.

Feeling Dirty Inside

Even though I was looking smaller and smaller every day, my parents thought I was eating again, so they mostly got off my case about having any eating disorder.

But I felt dirty inside.