National Eating Disorders Association
Blog

Seeing Through ED’s Disguises

Suzanne Oliver

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 that the clues began appearing and wonders anxiously, “What if I had done x or y then? Would I have staved off the ED?  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 ED’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 as mute as a pumpkin and letting it in. The self-recrimination hollows me out and feels deserved. But. 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 teenaged 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 my shock at my own increasing size when I stepped on 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 ED was able to hide from the doctor as well. ED wore the disguise of depression, anxiety, sleep deprivation and school stress. The pediatrician sent us to the therapist, who diagnosed depression, and then sent us to the nutritionist, who said, “Eat your fear foods and come back for a meal plan.”  

No one told me that you didn’t have to be underweight to have an eating disorder, that you could eat peanut butter, muffins and pizza and still have an eating disorder, that you don’t have to weigh 85% 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 she was finally given an ED diagnosis, and it was EDNOS (eating disorder not otherwise specified.) I had never heard of such a thing. This “partial” eating disorder diagnosis felt totally unhelpful. How do you treat the confusing collection of symptoms that add up to EDNOS? With a serotonin reuptake inhibitor (SRI), said the psychiatrist. Silly me. I thought that SRI was going to defeat ED once my daughter reached full dosage in six weeks’ time. 

According to a 2010 article in Pediatrics, the prevalence of EDNOS (now recognized as OSFED , other specified feeding or eating disorder) is greater than that of anorexia nervosa and bulimia nervosa combined and, depending upon the definition used, may be as high as 14% of the population. Though the diagnosis signifies that the criteria for AN or BN have not been fully met, that does not mean that the patients have a lesser disease. Patients diagnosed with EDNOS or OSFED can experience the same physical and psychological consequences as do those who meet the criteria for AN or BN.

I wish I had known that ED had more than two disguises (AN and BN), that dieters are at an increased risk of developing ED and of obesity, that in studies caloric restriction accompanied by stress produced animal models for binge eating disorder, and 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 ED 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 AN or BN 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 NEDA website, read the Parent Toolkit and educate yourself about ED’s disguises so you can shine a bright light on the monster before he slithers into your child’s bedroom.  

NEDA is here to support you during the evolving COVID-19 outbreak. The health of our community, especially those who are most vulnerable to the virus' serious complications, remains paramount. To access resources that can provide free and low-cost support, please click here.

Resources