Imagine suffering from an illness that could kill you but getting heaps of praise from everyone — including doctors — for the very symptoms that are destroying your body and mind. That’s the reality many people who struggle with eating disorders such as anorexia and bulimia face on a daily basis. They lose 10 pounds in a few weeks, and they become the envy of their friends and relatives, who can’t stop talking about how they wish they had their willpower. It isn’t until someone with a problem actually begins looking like the movie version we have in our head of someone with an eating disorder that we begin to take their problem seriously. By that point, it’s incredibly difficult to treat a disorder that has become that person’s closest ally.
“Anorexia has the highest mortality rate of any mental illness,” says author Jenni Schaefer, a recovered anorexic and national recovery advocate for the Eating Recovery Center’s Family Institute. “You can’t tell someone with an eating disorder by their weight. Weight is not a barometer of health for an eating disorder, and it’s not how you can tell if someone is struggling.”
The classic example of this is bulimia. People who binge and purge aren’t often underweight. For them, and anyone living with an eating disorder, the battle isn’t simply one that plays out in their bodies, even though the body will eventually show signs of vitamin and mineral deficiencies. It’s one that hijacks their minds and keeps them beholden to exercise and thoughts of food: what to eat, what not to eat, when to eat, which foods are “bad,” which are “good.”
A person who regularly hits the gym might be a healthy gym rat who goes home, eats foods packed with protein and good carbs, and doesn’t give working out another thought until it’s time to work out again — or she might be someone who is dealing with an eating disorder and feels out of control and completely worthless when she isn’t overexercising. It isn’t always possible to tell the two apart.
Schaefer’s personal experience with anorexia stems back to when she was 4 years old. While standing in dance class and staring at wall-to-wall mirrors, she began to compare her body to the bodies of the other little girls. “Negative body image came first, which is often the first thing to come along and last thing to go,” Schaefer says. When it occurred to her that she could restrict food and feel more in control of her body, she began doing little things, like saying, “No, thanks,” to birthday cake at friends’ parties.
In middle school, Schaefer felt fearful of the changes that were happening to her body, so the food restrictions increased. By high school, she says she was binging and purging, but because she still looked “normal” and was getting straight A’s in class, no one questioned her health. It wasn’t until college that Schaefer attempted to seek help from a doctor. The medical professional asked her if she ate food. Technically, yes, she did eat, just not a whole lot. And when she wasn’t eating, she was obsessed with thoughts about food or beating herself up for eating a meal. But the mental component was never brought up or discussed, and Schaefer was sent home that day without a diagnosis.
“Instead of asking, ‘Do you eat?’ doctors should be asking questions like, ‘What did you eat today? What role does food play in your life? Is your life unmanageable, or do you feel powerless because of food? Do you feel miserable because of food?'” Schaefer says. “I don’t care what you weigh or what you’re eating. If you answer yes to that question, you need help. Most eating disorders don’t fit nicely in doctor categories.”
And there’s another piece of the eating disorders puzzle so many fail to acknowledge, Schaefer says: There are certain genetic traits that make some people more likely to find comfort in restricting food or controlling their bodies through purging or overexercising. “I was an anxious child and sensitive at 3 and 4 years old,” she says. “I had perfectionist tendencies and studied all the time. These are traits that we know are present in people with EDs.”
Schaefer managed to get the help she needed at age 22, and, contrary to popular belief, she says you can fully recover from an eating disorder. Which isn’t to suggest it’s easy to recover from an ED while living in a society that, Schaefer says, “literally has an eating disorder.”
“We live in a society that constantly tells you what to eat, what not to eat, and you’re told you have to be thinner,” she says. “I know so many people who are praised by their doctors for losing weight even though they have an eating disorder. Diets are being repackaged. We now talk about lifestyle changes. Food does not have a moral value, but we place those values on ourselves: Eat chocolate cake; you’re bad. Eat broccoli; you’re good.”
The key to recovery includes changing our collective mindset once and for all about eating disorders and treating them as mental illnesses. Educating more professionals in the health field about EDs is crucial, as is encouraging people to seek early intervention from a professional who specializes in eating disorders and teaching them to listen to and trust their bodies’ signals when it comes to food.
And one more thing: Stop judging a person’s addiction by BMI and the numbers on a scale. “Instead of labeling people, we need to look at people’s pain and suffering,” Schaefer says. “It took years and years to discover that people can fully recover from an eating disorder. People can find total freedom from it.”