Atypical anorexia patients who never become emaciated are just as likely as their underweight counterparts to experience a slow heart rate, menstrual dysfunction and electrolyte imbalances.  iStock
Atypical anorexia patients who never become emaciated are just as likely as their underweight counterparts to experience a slow heart rate, menstrual dysfunction and electrolyte imbalances.  (iStock)

Anorexia Patients Are Not All Underweight

Anorexia Patients Are Not All Underweight

Weathering a pandemic offers the perfect recipe for exacerbating an eating disorder: stress, anxiety and solitude.

This spring, the National Eating Disorders Association  saw a 78% increase over last year in people sending messages to its helpline. Crisis Text Line, another nonprofit, is receiving 50% more texts about eating disorders now than before the coronavirus outbreak.

"We know that eating disorders thrive in isolation, and people with eating disorders are very good at keeping their behavior secret," said Claire Mysko, the chief executive officer of the National Eating Disorders Association.

The vast majority of helpline requests come from young women.

Annie, a 27-year-old San Francisco resident, is surviving the coronavirus crisis, but it hasn't been easy. (At her request, we’re using only Annie's first name to protect her privacy.)

“Maintaining recovery now is harder than before the pandemic,” she said. “I have so much more time with my thoughts right now.”

Restricting food is one way to take control when the outside world feels chaotic. The illness Annie grapples with is called atypical anorexia nervosa, also known as higher weight anorexia. The disease has led her to experience all the classic anorexic symptoms but one: While in the past she has obsessively dieted, overexercised, and suffered from a distorted body image, she did not become emaciated.

“These are people who are starving themselves but don’t look the part," said Mysko.

Same Illness, Bigger Body

“This idea that one could have anorexia nervosa at a higher weight or a seemingly normal weight is a very new concept,” said Andrea Garber, the chief nutritionist at the UCSF Eating Disorders Program.

A recent UCSF study published in the journal Pediatrics found that atypical anorexia patients are just as likely as their underweight counterparts to have a slow heart rate, menstrual dysfunction and electrolyte imbalance. They may also experience an orthostatic heart rate increase, which normally occurs when someone lying down stands up.

If you're not eating enough calories to sustain your body's basic metabolic needs, it is bad for your health no matter what your starting weight.

“If they lose the same amount of weight, over the same period of time, they will be just as malnourished and just as medically unstable as a so-called skinny kid,” said Garber.

For all types of anorexia, these medical complications can result from behaviors like binging, purging, starving and overexercising. Anorexia affects less than 1% of Americans, but its 5% mortality rate is higher than for any other psychiatric illness, and similar to the rates for childhood cancers.

In Annie's case, she used food to regulate the emotions she experienced after a series of childhood traumas. She was sexually abused by someone outside her family. Her father had cancer. Her parents divorced.

“I think I just became super-overwhelmed with a lot of things, and I just stopped eating,” she said.

When she was 8, she refused solid foods, surviving mostly on liquids. “All those sort of negative emotions like sadness and grief disappeared because I didn’t have the energy to feel them.”

Eventually, things settled down at home. She started eating again in the fourth grade, but relapsed in high school when her body suddenly felt too big. Her hips spread, and within a year she grew 7 inches.

“I didn't feel at home in my body,” she said. “If I could restrict my food and get my body to the way that felt safe, then I felt safe.”

She wouldn’t allow herself to eat more than 500 calories a day. After school at cross-country practice, she ran until collapse. When she stepped on her scale, the numbers started to go way down.

“My doctor saw my weight,” said Annie. “He was like, ‘Do you eat?’ And I said, ‘Well, yeah. I eat.’ And he was like, ‘OK.’ And that was it.”

Because Annie’s doctor knew she was a long-distance runner, he did not question the weight loss. Yet she was also anemic, stopped menstruating, passed out after races and sustained stress fractures, likely due to low bone-mineral density.

She judged herself harshly.

“It was just this overwhelming self-hatred,” she said.

Even though she dreamed of elaborate meals at night, she resisted any urge to indulge. The less she ate, the better she felt emotionally.

"I felt like it was this thing that I was just so good at," said Annie. "I felt like even if everything else was going wrong, at least I was losing weight, because that meant I was doing well."

As the years passed, Annie landed in the hospital more and more. In her early 20s, she was hospitalized 10 times in less than two years. During one episode, her heart slowed to a dangerously low 20 beats per minute, three times below normal.

Too Heavy to Treat

Despite her medical problems, Annie didn't qualify under her insurance plan for in-patient treatment, where she could have received counseling and assistance with meals. She wasn't covered because her body mass index, which measures body fat relative to height and weight, was slightly too high.

“I was denied treatment for the psychological aspect of my care, which is a very hard thing to hear as an eating disorder patient,” she said. “You’re not skinny enough to warrant care.”

She said a few years ago, “There were literally times ... where I was losing weight so I could get treatment."

Finally, doctors at UCSF helped Annie petition her insurance carrier to cover residential treatment based on the diagnosis of atypical anorexia nervosa.

Recovery

After two rounds of residential treatment, Annie feels healthy, though, "I wouldn't call myself recovered," she said. "If I do get sick or miss a couple meals just out of circumstances, the thoughts start to come back.”

These days, those thoughts do circle around in her head more than usual. During the early days of the pandemic, she became triggered when witnessing people swarming the grocery store aisles and overloading their carts with food. Her stress level spiked even more when she lost her job. Social media was a landmine, because it’s filled with jokes about gaining the “COVID 19,” a play on the notorious "freshman 15” pounds that some people put on during their first year of college.

But her weekly video therapy sessions offer a crucial anchor in these otherwise unstructured days. This fall she starts medical school on a full scholarship to study pediatrics, and she is looking forward to the regular schedule.

Someday she hopes to help young people with eating disorders.

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