Jenni Schaefer, 42, was a young child when she began to struggle with negative body image.
“I actually remember being 4 years old and being in dance class, and I distinctly remember comparing myself to the other little girls in the room and feeling bad about my body,” Schaefer, now based in Austin, Texas, and author of the book "Almost Anorexic," told Healthline.
As Schaefer got older, she began to restrict the amount of food she ate.
By the time she started high school, she developed what’s now known as atypical anorexia.
At that point in time, atypical anorexia wasn’t an officially recognized eating disorder. But in 2013, the American Psychiatric Association added it to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
The DSM-5 criteria for atypical anorexia are similar to those for anorexia nervosa.
In both conditions, people persistently restrict the calories they eat. They demonstrate an intense fear of gaining weight or a refusal to gain weight. They also experience distorted body image or put excessive stock in their body shape or weight when evaluating their self-worth.
But unlike people with anorexia nervosa, those with atypical anorexia aren’t underweight. Their body weight tends to fall within or above the so-called normal range.
Over time, people with atypical anorexia can become underweight and meet the criteria for anorexia nervosa.
But even if they don't, atypical anorexia can cause serious malnutrition and damage to their health.
“These people can be very medically compromised and quite ill, even though they may be at a normal weight or even overweight,” Dr. Ovidio Bermudez, chief clinical officer of the Eating Recovery Center in Denver, Colorado, told Healthline.
“This is not a lesser diagnosis [than anorexia nervosa]. This is just a different manifestation, still compromising health and putting people at medical risk, including risk of death,” he continued.
From the outside looking in, Schaefer “had it all together” in high school.
She was a straight-A student and graduated second in her class of 500. She sang in varsity show choir. She was headed to college on a scholarship.
But underneath it all, she struggled with “unrelenting painful” perfectionism.
When she couldn’t meet the unrealistic standards she set for herself in other areas of her life, restricting food gave her a sense of relief.
“Restricting actually tended to numb me in a way,” she said. “So, if I was feeling anxious, I could restrict food, and I actually felt better.”
“Sometimes I would binge,” she added. “And that felt better, too.”
Seeking help without success
When Schaefer moved away from home to attend college, her restrictive eating got worse.
She was under a lot of stress. She no longer had the structure of daily meals with her family to help her meet her nutritional needs.
She lost a lot of weight very quickly, dropping below the normal range for her height, age, and sex. “At that point, I could have been diagnosed with anorexia nervosa,” she said.
Schaefer’s high school friends voiced concerns about her weight loss, but her new friends at college complimented her appearance.
“I was receiving compliments every day for having the mental illness with the highest mortality rate of any other,” she recalled.
When she told her doctor that she’d lost weight and hadn’t gotten her period for months, her doctor simply asked her if she ate.
“There's a big misconception out there that people with anorexia or atypical anorexia do not eat,” Schaefer said. “And that's just not the case.”
“So when she said, ‘Do you eat?’ I said yeah,’” Schaefer continued. “And she said, ‘Well, you're fine, you're stressed out, it’s a big campus.'”
It would take another five years for Schaefer to seek help again.
Getting praise for weight loss
Schaefer’s not the only person with atypical anorexia who’s faced barriers to getting help from healthcare providers.
Before Joanna Nolen, 35, was a teenager, her pediatrician prescribed her diet pills. By that point, he’d already been pushing her to lose weight for years, and at age 11 or 12, she now had a prescription to do just that.
When she hit junior college, she began to restrict her food intake and exercise more.
Fueled in part by the positive reinforcement she received, those efforts quickly escalated into atypical anorexia.
“I started to notice the weight coming off,” Nolen said. “I started to get recognition for that. I started to get praise for what I was looking like, and there was now a huge focus on, ‘Well, she's got her life together,’ and that was a positive thing.”
“Watching the things that I ate turned into massive, obsessive calorie counting and calorie restriction and obsession with exercise,” she said. “And then that progressed into abuse with laxatives and diuretics and forms of diet medications.”
Nolen, based in Sacramento, California, lived like that for more than a decade. Many people lauded her weight loss during that time.
“I flew under the radar for a very long time,” she recalled. “It was never a red flag to my family. It was never a red flag to doctors.”
“[They thought] that I was determined and motivated and dedicated and healthy,” she added. “But they didn't know what was all going into that.”
Facing barriers to treatment
According to Bermudez, these stories are far too common.
Early diagnosis can help people with atypical anorexia and other eating disorders get the treatment they need to begin the recovery process.
But it many cases, it takes years for people with these conditions to get help.
As their condition continues untreated, they may even receive positive reinforcement for their restrictive eating or weight loss.
In a society where dieting is widespread and thinness is valorized, people often fail to recognize eating disordered behaviors as signs of illness.
For people with atypical anorexia, getting help can mean trying to convince insurance companies you need treatment, even if you're not underweight.
“We’re still struggling with people who are losing weight, losing menses, becoming bradycardic [slow heart beat] and hypotensive [low blood pressure,] and they get a pat on the back and told, ‘It's good that you lost some weight,’” Bermudez said.
“That's true in people who look like they’re underweight and oftentimes traditionally malnourished in appearance,” he continued. “So imagine what a barrier there is for people who are of relatively normal size.”
Getting professional support
Schaefer could no longer deny she had an eating disorder when, in her final year of college, she began to purge.
“I mean, restricting food is what we're told to do,” she said. “We’re told we're supposed to lose weight, so those eating disorder behaviors often get missed because we think we're just doing what everybody's trying to do.”
“But I knew that trying to make yourself throw up was wrong,” she continued. “And that was not good and that was dangerous.”
At first, she thought she could overcome the illness on her own.
But eventually she realized she needed help.
She called the National Eating Disorders Association's helpline. They put her in touch with Bermudez, or Dr. B as she affectionately calls him. With financial support from her parents, she enrolled in an outpatient treatment program.
For Nolen, the turning point came when she developed irritable bowel syndrome.
“I thought that it was due to the years of abuse with laxatives, and I was terrified that I had done severe damage to my internal organs,” she recalled.
She told her doctor about all of her efforts to lose weight and her persistent feelings of unhappiness.
He referred her to a cognitive therapist, who quickly connected her to an eating disorder specialist.
Because she wasn't underweight, her insurance provider wouldn't cover an inpatient program.
So, she enrolled in an intensive outpatient program at the Eating Recovery Center instead.
Recovery is possible
As part of their treatment programs, Schaefer and Nolen attended regular support group meetings and met with dietitians and therapists who helped them on the road to recovery.
The recovery process wasn’t easy.
But with the help of eating disorder experts, they’ve developed the tools they need to overcome atypical anorexia.
For other people who are experiencing similar challenges, they suggest the most important thing is to reach out for help — preferably to an eating disorder specialist.
“You don't have to look a certain way,” said Schaefer, now an ambassador for NEDA. “You don't have to fit into this diagnostic criteria box, which in many ways is arbitrary. If your life is painful and you feel powerless because of food and body image and the scale, get help.”
“Full recovery is possible,” she added. “Don’t stop. You really can get better.”