When I Realized My Distrust of Food Had a Name

“Do you have trouble catching your breath when you walk up the stairs?”

“Yes,” I replied, looking at the floor.

“Are you still getting your periods regularly?”

“Unfortunately,” I laughed.

“I’m surprised,” the doctor said. “There’s just a small percentage of women who do when they are so underweight.”

“I’m lucky,” I sighed.

“I want you to go to the lab and they will give you a bottle. Every time you have to pee, you will go in it.” She pushed her glasses up on her nose, her eyes glittering. “Clear a shelf in the refrigerator and instruct your kids not to drink it.”

I took the piece of paper and left the room, unable to absorb my doctor’s words. I couldn’t have an eating disorder because I thought I was too skinny! I don’t have body dysmorphia and so I just have a high metabolism. But I would do what she said. I was thin, had heavy periods and most women complimented me on my looks. Pretty much I was a hot mess… before there was such a thing.

When I came out on the other side of that experiment and after I had learned there were indeed muscle gasses in my urine, the truth sank in.

I was sick. But this still wasn’t my bottom.

Bottom was the threat of in-patient admittance if I couldn’t get myself to the half a dozen appointments a week.

“We will be making sure you attend,” the check-in lady said with an edge to her voice.

I swallowed back my tears, a painful lump in my throat that had been with me for about three weeks and shambled out to the parking lot. Then I set about healing. Finally. My journey was long, decades of self-inflicted suffering I couldn’t understand and stop. Rules I made up that seemed sane to me. Not to eat at night in case I might get sick. Never to eat anything that had been recalled. Never to eat anything that had a high percentage of being tainted. To toss leftovers. Never trust smells or expiration dates.

I had a disease they didn’t know how to treat; it has a name now, but my psychiatrist had no idea what to call it when he was seeing me: ARFID (Avoidant Restrictive Food Intake Disorder).

The Eating Recovery Center (ERC) celebrated Eating Recovery Day this past May 2nd. They used the day to increase awareness of the signs of eating disorders, with the hashtag #DontMissIt. According to their press release, the signs are:

• Sudden, dramatic weight loss or constant weight fluctuation
• Constantly feeling cold – even in warm weather
• Negative self-talk, especially about one’s body
• Changes in mood and desire to interact with others socially
• Compulsive or excessive exercising
• Frequently engaging in conversation about food
• Avoiding certain foods that were once loved
• Unusual behaviors at meal times – practicing food rituals or avoiding meals altogether
• Using the bathroom right after a meal, or other signs of physical signs purging (swollen cheeks, marks/scars on knuckles – a.k.a. “Russell’s sign”)
• Evidence of hoarding food, empty food wrappers or containers, or the disappearance of large amounts of food in a short time

Eating Recovery Day was started two years ago, and the response has been overwhelming.

Dr. Rebecca Wagner, Clinical Director of Eating Recovery Center, Houston, shared with me, “Eating disorders have the highest mortality rate of any mental illness. Eating disorders affect every organ in the body. We are not sure how it will affect any one person. Even people who have had an eating disorder for less than 10 years are still at risk.”

I want to add in an additional little-known sign that Dr. Wagner shared and that hit home for me.

She states, “[These patients are] experientially avoidant — they have much greater reactivity to conflict management.” One of the goals of treatment is to help people learn to manage everyday life crises, and that includes avoidant behavior. The avoidance of confrontation spills over into avoiding food. So, if you notice the above signs in a friend or loved one, and this person also has a difficult time controlling their emotions, please take the steps to get them help.

Since the identification of anorexia nervosa and bulimia, the ED spectrum has widened to include other types of EDs.

ARFID, as aforementioned, is now a recognized eating disorder and the popularity of clean eating has enabled orthoexia nervosa, which Dr. Wagner identifies as another form of dieting, saying, “You cut out different things and keep going. It’s a dangerous cycle, but the result is the same. Severe malnourishment.”

I can pinpoint the exact moment recovery began — when I confessed my rules I had slapped a shameful label on.

“I make rules about eating,” I said, picking at an imaginary thread on the couch in the psychiatrist’s office, my empty stomach churning.

“Like what?” he asked, his gentle gaze holding mine.

“I don’t trust food and I don’t feel safe and so I try to control what I eat.”

“Go on,” he urged, nearly in a whisper.

My eyes filled with the tears of confession. I let them fall.