What I Had Wish I Had Known Before My Daughter Developed an Eating Disorder

Early intervention. The phrase can sound like a negative judgment to a parent whose child has been in treatment for an eating disorder for multiple years. The mind returns to the time when clues appeared and wonders anxiously, “What if I had done x or y? Would I have stopped the eating disorder? If I had been more vigilant, more protective, stood like a demon mother with a pitchfork outside my daughter’s bedroom door, would I have prevented the eating disorder from getting in? Or would that shapeshifter have come in on a noxious breeze through the window screen or a foul puff of vapor under her bedroom door?”

In hindsight, I can arrange the early clues so that eating disorder’s arrival seems as apparent as a Halloween trick-or-treater knocking on the door. I can judge myself for not recognizing the disguise, for stepping aside, mute as a pumpkin, and letting it in. The self-recrimination hollows me out and feels deserved. But I know I did my best. I worried that hairy disguise with my eyes. I pinched its arms. I sniffed its breath. I questioned it with suspicion, but it was a crafty liar and master of deception. 

It had habits that were common among teen-aged girls – dieting, body dissatisfaction, late night eating, long showers, a lack of sleep and a retreat into the bedroom. I thought of my own grapefruit lunches in high school, my fear during puberty when I discovered dimples in my spreading bottom and shock at my own increasing size when I stepped upon my mother’s bathroom scale. Was this the same? 

But there was more: the weight loss that prompted the school nurse to call, the lack of energy observed by the tennis coaches, the missed days of school and the avoidance of social situations involving food. I questioned my daughter and brought her to our pediatrician. But the eating disorder was able to hide from the doctor as well. The eating disorder wore the disguise of depression, anxiety, sleep deprivation and school stress. The pediatrician sent us to the therapist who diagnosed depression. The therapist sent us to the nutritionist who said eat your fear foods and come back for a meal plan. 

No one told me you didn’t have to be underweight to have an eating disorder, that you can eat peanut butter, muffins and pizza and still have an eating disorder. That you don’t have to weigh 85 percent of your expected weight or engage in a purging behavior every day in order to have an eating disorder. It wasn’t until five months after my daughter first started seeing the therapist that the therapist finally gave her an eating disorder diagnosis, and it was EDNOS (Eating Disorder Not Otherwise Specified.) I’d never heard of such a thing. This “partial” eating disorder diagnosis felt totally unhelpful. How do you treat the confusing collection of symptoms that adds up to EDNOS? With a serotonin reuptake inhibitor (SRI), said the psychiatrist. Silly me. I thought that SRI was going to defeat her eating disorder once my daughter reached full dosage in six weeks time.

EDNOS is the most prevalent eating disorder diagnosis. And although it’s a diagnosis that signifies the criteria for anorexia or bulimia have not been fully met, that does not mean it’s a lesser disease. Patients diagnosed with EDNOS can experience the same physical and psychological consequences as those who meet the criteria for anorexia or bulimia.  

I wish I had known eating disorders have more than two disguises, that dieters are at an increased risk of developing eating disorders and of obesity, that in studies, caloric restriction accompanied by stress produced animal models for binge eating disorder, that behavioral rigidity, perfectionism and harm avoidance are characteristics that often accompany an eating disorder.    

If I had known those things would I have been able to better protect my daughter? I think so. I might have recognized the telltale combination of dieting, perfectionism and stress, and gotten my daughter to an eating disorder medical specialist much sooner. 

But now I hope the lessons I’ve learned might be helpful to others. The months leading up to an eating disorder diagnosis are marked by fear and confusion. If you think something is wrong with your child, trust yourself. It doesn’t have to look like textbook anorexia or bulimia in order to be a psychological or physiological concern. It’s true that adolescent dieting and concern about body shape are common, but these can also be symptoms of a disorder. Find a specialist. Use the National Eating Disorder Association‘s website, read the Parent Toolkit and educate yourself about an eating disorder’s disguises so you can shine a bright light on the monster before he slithers into your child’s bedroom. 

It’s National Eating Disorder Awareness Week! To learn more visit NEDA Awareness.