For some of us, weight is just a number on the bathroom scale. Others may wish they weighed less (or sometimes more) but don’t think all that much about it. For those with an eating disorder, however—a category that can include people of all shapes and sizes—their relationship with food, weight, and body image is all-consuming and destructive to their health and the quality of their lives.
For people with an eating disorder, weight is a critical part of their identity. If the number on the scale goes up, they feel humiliated. To prevent that from happening, they may restrict themselves to certain types of food and carefully balance what they eat with calorie-burning exercise. A gain of a pound or two may be punished by skipping the next meal. Then, when these restrictions become unsustainable, they might eat a couple of candy bars, but in secret, hiding the wrappers. And so begins a cycle that’s hard to break.
The stress we’ve all faced during the pandemic has played out in a wide variety of ways, including weight gain, for many, and for those with eating disorders—an exacerbation of symptoms.
The National Eating Disorders Association has reported increases as high as 70 to 80% in calls to its helpline at different points in the past year. Last July, the International Journal of Eating Disorders published a survey of people in the United States who had already been diagnosed with anorexia nervosa (sometimes just referred to as anorexia), and the responses showed that many were experiencing worse symptoms. And almost a third of those with binge-eating disorder reported an increase in episodes.
“We expected that eating disorders would be more of a problem during the pandemic, especially when kids were staying home,” says Janet Lydecker, PhD, director of child eating and weight initiatives for Yale’s Program for Obesity, Weight and Eating Research (POWER). The program provides evidence-based psychological and behavioral clinical treatment trials for both children and adults. “They’re stressed and lonely, and they have access to food, so we do see more binge-eating. And then they gain weight and are desperate to lose it, so we see more restrictive eating,” she says.
How do you know it’s an eating disorder?
Eating disorders are more common than you might guess. National surveys estimate that 20 million women and 10 million men in America will have an eating disorder at some point in their lives. The behaviors associated with eating disorders vary.
The three most common ones are:
- Anorexia: A condition characterized by weight loss and a distorted body image, in which the person has a fear of gaining weight. People with anorexia dramatically restrict the calories and types of foods they consume, may exercise compulsively and, in some cases, purge by vomiting or use laxatives.
- Bulimia: A cycle of binging on food (in large amounts) and compensating with such behaviors as self-induced vomiting. When a person is having a bulimic episode, they feel unable to control the amount of food they are eating.
- Binge-eating disorder: This is similar to bulimia in that it involves episodes of uncontrolled eating, but it does not involve purging. Binge-eating disorder is the most common eating disorder and the one doctors know the least about at this point.
Some people dismiss the significance of their behaviors and may not even be fully aware that they have a problem that requires treatment, Lydecker says.
In fact, researchers from Yale and the University at Albany found that it’s actually fairly unusual for people with eating disorders to seek help for their symptoms or concerns. In the study, led by Yale psychologist Carlos Grilo, PhD, and published in Mayo Clinic Proceedings in 2019, only about half of more than 36,000 respondents who had eating disorders reported seeking any form of help—the findings were especially dramatic in men and members of ethnic and racial minority groups.
The study was based on the 2012-13 National Epidemiologic Survey on Alcohol and Related Conditions, which included responses from people who met standard criteria for lifetime eating disorders and who answered questions regarding whether they’d sought help.
Shattering the ‘thin, young woman’ stereotype
When thinking about who might have an eating disorder, it’s common to conjure an image of a slender, young white woman with perfectionist tendencies, but the truth is that they affect all kinds of people, regardless of race, sex, socioeconomic status, or any other factor, Lydecker says. Although eating disorders are most commonly diagnosed in adolescents and young adults, they affect individuals of all ages—even the elderly.
“Many adults report a range of disordered eating including behaviors such as binge eating, intrusive and distressing thoughts about eating, weight, or shape, and body image concerns,” says Valentina Ivezaj, PhD, who works with adult trial participants.
Binge-eating disorder—identified as a formal eating disorder only relatively recently—has challenged stereotypes by showing that people with eating disorders can have very thin physiques, or have normal weight, overweight, or obesity.
What’s also important, Ivezaj says, is the way we talk about these disorders. “We like to use ‘people-first language’ because we see it as less stigmatizing and more respectful. For example, we would say a ‘person with obesity or overweight’ rather than ‘an obese or overweight person,’” Ivezaj says.
In 2013, binge-eating disorder was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which defines and classifies mental disorders. Binge eating behaviors can arise in childhood, the teen years, or adulthood. “One thing people don't know, but science has learned—especially in the past five or 10 years—is that all eating disorders happen in all body sizes. That’s been a big shift,” Lydecker says. We started having a more flexible idea about body size and eating disorders when binge-eating disorder was more frequently diagnosed, but soon learned that anorexia and bulimia can also occur among individuals with larger bodies, she adds.
In fact, Lydecker believes doctors often fail to diagnose eating disorders in people who have overweight or obesity because they assume eating disorders are associated with being underweight. In such cases, they focus on the obesity—not the underlying reason for it. “Telling someone with obesity, ‘You just need to lose weight’ is counterproductive if they have an eating disorder,” she says.
Eating disorders affect transgender and nonbinary people disproportionally, in part because of the complicated relationship between body image and gender identity, says Christy Olezeski, PhD, director of the Yale Pediatric Gender Program. Though eating disorders are common in this population, they may present in very different ways. “We see a high co-occurrence of potentially problematic eating behaviors, but they look different than in cisgender individuals,” she says. For instance, transmasculine individuals may restrict their eating in the hope it will prevent puberty and the development of breasts and hips, as well as stop their menstrual cycle. Other individuals may intentionally try to gain weight to achieve a curvier figure.
Providers in the gender program speak to patients about their eating patterns, goals for their body, and markers of health, as well as healthier approaches with medications, nutrition, and exercises. “However, as a field we need to revisit and likely expand our current measures of eating behaviors, as well as our understanding of the etiology and treatment of disordered eating in transgender and nonbinary youth,” Olezeski says.
How does an eating disorder start?
Disordered eating is far more complicated than acquiring bad food habits. Scientists believe there is some genetic basis for eating disorders, and brain imaging researchers are helping to provide a better understanding of patterns of brain neurocircuitry and activity in people with eating disorders. Environmental factors, like the pressure to be thin and look good on social media, also contribute. “There are psychological factors like feeling out of control within the world and wanting to be able to control something,” Lydecker says. Perfectionism, emotional eating, and eating in response to negative emotions are part of it as well.
Many teenagers with binge-eating and other eating disorders report being bullied—so much so, that Teen POWER now has a clinical trial treatment program specifically designed to help people deal with bullying (including cyber-bullying) and weight. “Everyone has this misunderstanding that if they just lose weight, then they won’t be bullied anymore and life will be fine,” Lydecker says. “But being bullied and the disordered eating are problems that just last and last. So, we're trying to reach people in that window after they’ve started being bullied, but before the eating disorder begins—or at least before it gets really bad.”
Research shows if you seek professional help within the first three years of when the eating disorder develops—before it becomes an entrenched chronic health problem—treatment is more likely to be successful, Lydecker says. “With kids, we know that if binge-eating starts when they're a teen, it's likely to continue, especially in late high school and then college when they are figuring out how their life is going to be patterned.”
Yale POWER Program is studying the best ways to help
POWER offers a variety of clinical trials for children and adults focusing on such areas as the use of medications to treat binge-eating, plus such treatments as cognitive behavioral therapy (CBT). A new treatment trial is examining behavioral and/or medication treatments for adults with loss-of-control eating—the central feature of binge-eating—following bariatric surgery.
One approach the program is studying is CBT for teens. The trial provides treatment over four months, first focusing on the eating pattern. To do this, they ask participants to write down everything they eat, what time they eat, how they were feeling, and what they were thinking at the time they ate. “We look for patterns with the teen and help them to eat meals and snacks on a regular, predictable schedule,” Lydecker says. Parents attend the sessions once a month as well, which is helpful for a discussion of such practical issues as how to buy groceries for a child who may insist on only eating certain foods.
As they develop a record of behaviors associated with eating or restriction, the therapist and participants together look for patterns and think about what was happening at those times when the problem was at its worst. “Were you stressed? What happened at school? Did you have an argument?” Lydecker asks. “Once we identify a pattern, we think about ways to cope with it or start interrupting the cycle, so that a binge doesn't happen. With that, we start to try to shift their identity, so that it's not just the number on the scale or what they look like in the mirror. It’s who they are—or who they want to be—as a person.”
Avoiding treatment for eating disorders can lead to other problems
Treatment can be critical for a multitude of reasons, one being that eating disorders have one of the highest mortality rates of any mental health illness. They can eventually lead to such serious physical complications as cancer, diabetes, and organ failure, if not treated. They are associated significantly with suicide attempts, adds Ivezaj.
Michael Lerner, MD, a Yale Medicine otolaryngologist, says cases that go untreated can lead to symptoms usually associated with such conditions as acid reflux. When the larynx or throat is continually exposed to acid and pepsin from the stomach, the result can be chronic inflammation—and in the worst cases, eventual precancerous changes, he says.
“In severe cases, frequent and vigorous retching or vomiting can lead to stricture [or narrowing] of the esophagus, which can result in dysphagia [or swallowing issues],” Dr. Lerner says. People with these conditions might find that they feel the urge to clear their throats frequently or notice a foreign body sensation in their throat. “So, otherwise common symptoms such as voice change and throat sensitivity, which are typically attributed to allergies or acid reflux, could, in fact, also be due to an eating disorder,” he says.
How parents can offer support
Now is an especially important time to provide support for a person with an eating disorder—as pandemic restrictions ease and people go out more, they feel critical of their weight and shape, Lydecker says. Much like someone who anticipates going to the beach again after gaining a few winter pounds, many are conscious about their appearance as they return to work or school. “In years past, we’ve already seen this with kids at the end of their summer vacations,” she says.
If you are a parent and want to talk to your children about body image and healthy eating, Lydecker recommends introducing the topic casually, in small doses, with a focus on health and not body shape or size. “Avoid talking about dieting or thinking about weight loss as a ‘solution’—that will not make a child more popular, more confident, less bullied, happier, or more successful,” she says. “Thinking about weight loss as a solution to problems in a child’s life is like saying that weight is a problem, which is a message the child will likely internalize.”
“A parent also can be aware of how they present their own body image and eating habits to their children, and avoid comments like, ‘I hate how I look in this outfit,’ or ‘That’s going to go directly to my thighs,’” Lydecker says. “Kids are like sponges. They hear things and they internalize them, even in the teenage years when they pretend they're not listening.”
For information on becoming a participant in a POWER research study for adults or children, complete and submit their form or call 203-785-7210.
If you are concerned that a loved one might be struggling with an eating disorder, the National Eating Disorders Association website has lists of signs and symptoms.