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But she doesn’t look like she has an eating disorder! What people need to know about the emotional profile of eating disorders

Eating disorders can hide in plain sight when we limit diagnosis to weight and food behaviors

The popular presentation of eating disorders is an emaciated white girl with haunted eyes, and while there are some people who have eating disorders who fit that profile, they are by far the minority. Only 14.5% of all eating disorders meet the clinical underweight criteria for Anorexia Nervosa, and even those who are clinically underweight may still appear healthy in our culture that reveres thin bodies.

It is also important to note that eating disorders affect people of all gender identities, races and sexual identities.

If you have a child who has an eating disorder, you may find it difficult to match up what you visualize when you think of eating disorders with how your child looks. If you choose to talk to others about your child’s eating disorder (in a way that is respectful of your child), you may be surprised by how often you hear “but she doesn’t look sick!” from well-meaning friends and family members.

But the worst situation of all is when healthcare providers miss the signs of an eating disorder in our children. Eating disorders can hide in plain sight in a child who is not clinically underweight, so parents must fight for a diagnosis when they sense that something is wrong with their child.

Only 14.5% of people who have eating disorders meet criteria for Anorexia Nervosa

Anorexia, like all eating disorders, has very serious health complications. But if parents and loved ones only identify people who are dangerously underweight with eating disorders, we risk under-diagnosing and under-treating the majority of eating disorders that do not result in clinical underweight status.

According to the DSM-5 criteria, to be diagnosed as having Anorexia Nervosa a person must display:

  • Persistent restriction of energy intake leading to significantly low Body Mass Index (BMI).
  • Either an intense fear of gaining weight or of becoming fat or persistent behavior that interferes with weight gain (despite significantly low BMI).
  • Disturbance in the way one’s body weight or shape is experienced, undue influence of body shape and weight on self-evaluation, or persistent lack of recognition of the seriousness of the current low body weight.

These criteria for Anorexia Nervosa are limited to people who are clinically underweight based on the BMI scale. Although it is commonly used, the BMI scale has been heavily discounted given its extreme limitations and a disregard for natural body diversity.

BMI (body mass index), which is based on the height and weight of a person, is an inaccurate measure of body fat content and does not take into account muscle mass, bone density, overall body composition, and racial and sex differences. (Medical News Today)

The majority of eating disorders have no minimum weight requirement

Most people who have eating disorders do not meet the criteria of being medically underweight. This means that, even while terribly sick, we look just like anyone else. We may be of “lower,” “average,” or “higher” body weight based on BMI.

This can be dangerous, especially since many of us weight cycle through our eating disorders. Regardless of our formal diagnosis, most of us spend some of our time dieting, which meets all the diagnostic criteria for Anorexia. When we lose weight using our disordered behavior, we receive praise and positive feedback. Such positive feedback further entrenches our eating disorder and weight cycling behaviors. People ask for our “secrets” and believe we are healthier because we lost weight.

This is why weight is a very tricky element of eating disorder diagnosis and treatment. Parents should never assume that a child’s weight alone is a sign of health or illness without careful evaluation of emotional and behavioral symptoms that will more reliably indicate an eating disorder.

Eating disorder behaviors are linked

When we leave body weight out of the equation, we can then identify the behavior patterns that differentiate eating disorders from each other. The basic behaviors involved in eating disorders are restriction, bingeing and purging.

These behaviors allow us to fit people who have eating disorders into the boxes of Anorexia Nervosa (14.5%), Bulimia Nervosa (21.5%), and Binge Eating Disorder (59%).

But eating disorders are rarely distinct. Bulimia and Binge Eating both typically involve periods of severe restriction, and many people who are diagnosed with Anorexia also binge and/or purge. The longer a person lives with an eating disorder, the more likely they will have a complex form that does not fit neatly into a single diagnosis.

We must look deeper than a person’s weight or eating behavior to truly understand eating disorders

When we get beyond body size and eating behaviors, we can start to notice the emotional similarities among all eating disorders. What many of us have in common across the diagnostic criteria for eating disorders are the following emotional signs:

  • A tendency towards perfectionism and/or binary (black and white) thinking patterns
  • History of trauma
  • Anxiety and/or depression
  • Lack of adaptive coping skills to manage feelings of stress and anxiety
  • A sense of being different or “other” compared to our peers
  • Tendencies towards pleasing others at the expense of our own needs
  • Low awareness of what is inherently pleasing to ourselves
  • Lack of assertiveness, especially when dealing with boundaries and self-care
  • Low self-worth, and the belief that we have fundamental and intractable personality flaws
  • Strong desire to be “good” as defined by society
  • Defensiveness when confronted about unusual eating behaviors
  • Irritability, moodiness, interpersonal conflicts and general social isolation

None of these signs can be seen by looking at our bodies or at the number on the scale. These signs don’t even have anything to do with food. If a parent observes these emotional signs in combination with weight fluctuation and/or unusual eating rituals and behaviors, then there is a good reason to seek care and treatment from a professional who has experience with eating disorders.

Even if your child never meets weight or behavioral criteria for an eating disorder, these emotional signs are enough to warrant therapy to support the possibility of preventing a future eating disorder.

It is our deep wish that healthcare providers, educators, parents, and loved ones recognize the emotional profile of eating disorders so that those of us who suffer from them will receive the treatment we need.

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