You can starve at any weight. People with atypical anorexia struggle to get diagnoses, treatment

When Erika Queen was growing up outside Olympia, classmates and family bullied her about her weight.

"I was always a chunky kid," she said. "I very quickly developed shame around it. As I got older and learned more about food and calories and nutrition and things like that. I latched onto that math like nobody’s business.”

Queen said she developed an eating disorder, going through long bouts of starving herself, skipping meals, eating many fewer calories than her body needed. She said she could have been diagnosed when she was as young as 9, but no one figured out she wasn’t eating.

“Nobody noticed,” she said. “Nobody notices when the fat girl loses weight.”

It wasn’t until 2016 — when she was in her mid-30s — that she first got treatment for her eating disorder.

She’s now 44 and lives in Mount Vernon with her husband and son. She’s still struggling with what’s known as atypical anorexia.

The stereotype of someone with anorexia is an extremely skinny teen girl. But you can suffer from anorexia in any size body, at any age. When someone has anorexia but their body mass index (BMI) is over 18.5 — that is, classified as normal or overweight — it's called atypical anorexia.

That means people suffering from the disease are many shapes and sizes, and they can move from one category to the other, sometimes within a short period of time. It’s not uncommon for people who experience anorexia when they’re young to be diagnosed with atypical anorexia later in life.

Atypical anorexia is an old condition, but a relatively new diagnosis. It was added to the Diagnostic and Statistical Manual of Mental Disorders, or DSM, in 2013. Since then, studies have found that there are more people with atypical anorexia than low-weight anorexia.

People suffering from atypical anorexia, just like people with low-weight anorexia, starve themselves, skip meals and eat drastically fewer calories than their bodies need, lose large amounts of weight rapidly, over-exercise, often avoid social occasions that involve food, and suffer from body dysmorphia — no matter their size, they often think they’re heavier than they are, and always believe that they need to lose weight.

“What's gone through my head for 35 years is my body size is not acceptable. It needs to be smaller,” Queen said. She said an internal voice is constantly repeating, “You're too fat. You need to lose weight. You are not acceptable. This is not okay.”

Researchers say atypical anorexia is just as dangerous and life-threatening as low-weight anorexia.

Erin Harrop is an assistant professor of social work at the University of Denver whose research focuses on atypical anorexia. Harrop also works with people with eating disorders as a clinical social worker.

“When a body is starving and not getting the energy that it needs to survive, it just starts taking different functions offline,” Harrop said.

Some people think it can’t be harmful for a person in a larger body to starve themselves, because they can just burn their fat instead of eating food. But fat isn’t the same as food — it’s not nutritionally complete. So people in larger bodies who have anorexia have the same health problems as people in smaller bodies.

“In someone who is starving, regardless of body size, we see menstrual irregularity,” Harrop said. “We also see immune function drop. Our heart rates get a lot slower. Blood pressure drops. Body temperature drops. All of those things can lead to cardiac problems, kidney problems, and immune problems that can ultimately take someone’s life.”

Even so, it generally takes years longer for people with atypical anorexia to get a diagnosis.

People around them don’t express concern. They tell them dieting and losing weight is a good thing.

Medical professionals can have the same blind spot, and often miss or dismiss clinical signs of an eating disorder — such as rapid, dramatic weight loss; dizziness and fainting; missed periods; or a racing heart.

On average, it takes more than 11 years for someone with atypical anorexia to get a diagnosis, compared to 2.5 years for someone with low-weight anorexia.

It can also be harder to recover from atypical anorexia.

Instead of people congratulating them on their recovery, people often make comments about taking recovery “too far,” or they tell the person recovering from an eating disorder that they looked better when they were starving.

Harrop, the researcher in Colorado, has suffered from atypical anorexia themself.

“Every day, I have to live in a world filled with diet culture that tells me I looked better before, when I was starving, that I was healthier before,” Harrop said, “even though now I don't have a heart condition. I don't have kidney failure. I'm not at risk for osteoporosis. I've been able to have a child.”

In Seattle, there’s an intensive eating disorder clinic called Opal, one of the first to treat atypical anorexia.

On the fifth floor of a nondescript office building in the University District, there’s a cafeteria and rooms for group and individual counseling.

Lexi Giblin, a psychologist and one of Opal’s co-founders, said she and the other founders used to see patients with eating disorders in private practice.

“We would send our clients to residential treatment facilities for care, and they would get prescribed restrictive food diets,” Giblin said. “They would go to treatment for an eating disorder and get prescribed an eating disorder, which was just infuriating.”

That’s why Giblin and others founded Opal.

Giblin said even if someone can find a weight-inclusive treatment program, insurance will sometimes deny coverage to people with larger bodies.

Giblin said one of the biggest concerns on her radar are the new weight-loss drugs like Ozempic and Wegovy, known collectively as GLP1s.

“I'm pretty concerned about how this is going to go,” Giblin said.

Some people wonder, if people with atypical anorexia are trying to lose weight, can’t they accomplish that with GLP1s?

But Giblin and other eating disorder experts say that’s not the answer.

For one thing, people with anorexia are already not eating enough. If GLP1s allow them to restrict even further, that would increase their health problems and their risk of serious complications.

Also, an eating disorder is not the same thing as a goal weight, said Erin Harrop, the Colorado-based researcher.

“We don't get to our goal weight and be like, ‘Oh, good, the eating disorder is quieter now,’” Harrop said. “We lose that weight, and the more weight we lose, the louder and louder that eating disorder gets.”

In other words, people with eating disorders need to heal their relationships with food, and with their bodies — and GLP1s can’t help with that.

Erika Queen has dealt with all of this: insurance denying coverage for treatment because she wasn’t skinny enough; fat-shaming at the office, when she got back from residential treatment, with coworkers telling her she’d recovered too much weight; treatment centers, relapses.

Just last year, she had another relapse and lost more than 15% of her body weight. Her heart rate got so fast and out of sync she had to go to the ER, where they used electrical shocks to restore a normal heartbeat.

She said she’s trying to avoid another relapse, but she also doesn’t think she’ll ever really be better.

“I don't think recovery, how they talk about it, is really an option,” Queen said. “I don't recall ever being in a body that I was comfortable in other than when I was really sick. I have hated the skin that I'm in for 35 years.”