Wednesday, April 22, 2015

Dear ICED: "You are too FAT to have an Eating Disorder”

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Nurse told my daughter “You are too FAT to have an Eating Disorder”

In her preteens, my daughter became obese over the course of a year because of a medical issue. As we got the issue under control with medication, she started losing some of the weight. But it wasn’t happening quickly enough, in her mind. She quietly decided she was going to speed up the weight loss. She started skipping school lunch. Then she started telling us she had eaten a big lunch and didn’t want dinner.

“I wanted to lose weight faster,” she said. “One day the voice was just there. It was like someone flipped a switch. Any time I thought of food, it started telling me that I was ugly. Disgusting. Fat. I wasn’t worthy of food. I wasn’t even worthy of living. Nobody really loved me. Only the voice loved me. Everyone was lying to me, but the voice was telling the truth. That’s how it was when ED entered my life. I didn’t know what it was then. I thought it was the truth.”

She didn’t share her food struggles. We thought her weight loss meant her medications were successfully managing her medical condition. She was still overweight. Her moods started plunging into a big black hole. She failed classes. Got in trouble at school. Stopped activities she loved. Finally, she was hospitalized with depression and suicidal thoughts.

In the hospital, she told her therapist she thought she had an eating disorder. It was discussed in therapy, but as it was a short-term hospitalization, the real work was supposed to start after discharge.

Except at discharge, which happened without me present, the discharging nurse looked at my daughter, said “you are way too fat to have an eating disorder” and took whiteout to the line where the psychiatrist had written the diagnosis “Eating Disorder Not Otherwise Specified.”

My daughter didn’t tell me. She was ashamed. “I had just gotten evidence that I was a failure at everything,” she said. “I couldn’t even get having an eating disorder right.”

It took her two more months of depression and self-harm to tell me what happened. Today, she has been in treatment for ED for almost five months. Therapy and nutritionist wasn’t enough. She’s spent another stint inpatient with suicidal thoughts. She’s heading for a partial hospitalization program.

Because she is still overweight, and because she is actively fighting the ED voice in her head, she’s not a candidate for long-term residential care. The thoughts that torment her, that make her decide to alternately binge/purge and restrict aren’t visible. She wants help. She wants to get better. But finding the right treatment fit for her is an ongoing struggle. And we’ve fought to find medical providers who are informed and educated enough to know that an overweight person can suffer from an eating disorder and need just as much help as an underweight person.

The author prefers to remain Anonymous at this time.

Note: Eating disorders not otherwise specified (EDNOS) are eating disorders that do not meet the exact criteria for anorexia or bulimia nervosa but are considered serious conditions.  Binge-eating disorder is a type of eating disorder and EDNOS is the most common diagnosis among people who seek treatment.

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