Right before her summer break in 2016, Sophie got a stomach virus. The pint-sized 11-year-old from London took it in stride. An avid athlete and highly accomplished student, she clamored to get better for a trip her family was taking to Spain. She wanted to try surfing, go hiking, and play with her cousins.
Six months later, Sophie sat on a London hospital bed while its top medical team implored her to eat a spoonful of ice cream. A psychiatrist. An endocrinologist. A gastroenterologist. A pediatrician. Sophie had lost a dangerous amount of weight. The doctors told her that her brain and heart would shut down if she did not eat. She was, quite literally, starving.
“You could die,” said one doctor.
“I don’t care,” she responded.
How this 11-year-old went from a bubbly, extroverted tennis star who loved brownies and burgers to this grim stand-off is befuddling. Was it the pressure of the UK’s high-stakes exams? The negative influence of social media? The insidious images of bone-thin women and girls in fashion and advertising? Stress over fraught friendships, or pressure from home?
But for those who have seen or experienced eating disorders, Sophie’s story might sound familiar. The illness seemed to come out of nowhere; a “demon” that took over Sophie (not her real name), fueling rage and paralysis when faced with food. “I was not negotiating with the child I had known for 11 years,” Sophie’s mother said. She found herself needing to coach Sophie through every snack and meal, and facing a never-ending list of fears, including the potential long-term damage to her daughter’s brain and reproductive organs. Then there was grief over watching her child succumb to a disease she did not even know could affect kids so young.
“When the doctor told us ‘I’m sorry to tell you that your daughter has pre-pubertal anorexia nervosa’ it was like it didn’t compute,” said Sophie’s mom. “How is anorexia something that a prepubescent kid can even develop?”
While the number of people who suffer from anorexia has not changed dramatically over the years, the profile of the girls who are presenting with the condition has. “The illness is starting at a younger age,” says Mima Simic, joint head of child and adolescent eating disorder service at the Maudsley Hospital in West London, a clinic that’s responsible for changing the way eating disorders are treated around the world.
Lisa Damour, a clinical psychologist in the US whose book Untangled examines the inner life of teenage girls, says anorexia is among the problems that worry her most. “I would not wish this on my worst enemy,” she said. “Eating disorders, like substance use disorders, have a powerfully addictive property. They both can take over a person’s life and spin dangerously out of control.”
What causes it?
Anorexia has a significant genetic component: 50 to 70% of a person’s risk for developing it is genetic. ”There seems to be a biological vulnerability,” said Joanna Steinglass, an associate Professor of clinical psychiatry at the Columbia Center for Eating Disorders. “You don’t get it because of something someone says to you.” Of course, most people who are vulnerable do not develop an eating disorder. But for those who do carry the genetic vulnerability, high levels of anxiety, perfectionism and competitiveness increase the risk of developing the disorder.
The illness is most often triggered by dieting or some kind of restrictive eating, and/or compulsive exercising. Since younger children are now bombarded with messages about what is “good” and “bad” food, and what constitutes a ”healthy” lifestyle, some start to control their food at earlier ages, triggering the illness earlier.
“Younger people want to become vegetarian and vegan and they select the food they want to eat—they restrict their diet—and that will trigger the genetic risk they might be carrying,” says Simic. The concern is not over the fact that schools are emphasizing healthy eating, but rather that they demonize categories of food, such as sugar and gluten.
“Promoting sensible, healthy eating and a healthy lifestyle is clearly a positive,” says Ivan Eisler, the other co-head of the eating disorders unit at Maudsley, and one of the doctors who helped pioneer changes in how the illness is treated. “The risk arises if it encourages extremes and/or implies that those who do not conform to this are in some way lacking in character or weak.”
Rebecka Peebles, co-director of the Eating Disorder Assessment and Treatment Program at Children’s Hospital of Philadelphia is emphatic on this point. While she of course supports children (and adults) eating a balanced diet, she says the onslaught of eating advice is hard for kids—and parents—to navigate. “I am concerned that all of this focus on healthy eating is harmful to some kids,” she says.
Social media and selfie culture also plays a role, adding anxiety and pressure to already competitive childhoods, and casting a constant and judgmental eye on images, taken, filtered, and doctored for Snapchat, Instagram, and other platforms. “They are being bombarded,” said Simic. Weight shaming and weight bias sends kids a message that there is only one ideal of beauty, which they might not fit.
Bullying may also play a role, heightening feelings of shame and inadequacy, guilt and sadness. “Anorexia and bulimia provide an escape from the emotional pain,” wrote two family therapists from the US.
Once the illness is triggered, a terrifying vicious cycle emerges: Restriction leads to starvation, and not eating becomes a greater comfort than eating. Starvation impacts the brain and leads to very irrational behavior. “It hijacked our daughter’s brain,” said Sophie’s mother.
And in extreme cases, anorexia can be deadly. Indeed, it has the highest morbidity rate of all child and adolescent and mental health conditions.
“The eating disorder is characterized by extreme fear when faced with a plate of food,” said Eva Musby, whose own daughter had anorexia, and who wrote a book about it. “When you are in fear, you are in fight, flight, or freeze. You lose all of your rational faculties and you will do what it takes to make yourself feel safe.”
Eisler explains it this way: When people who are not predisposed to an eating disorder are starving, they become irritable and edgy. Eating will calm them. Those who are predisposed to anorexia react to food deprivation differently. “Instead of feeling irritable and edgy and wanting to eat, it can be calming to someone who is predisposed,” he says.
One British broadcaster recalled publicly that he did not understand why his daughter would not eat. In frustration, he told her: “If you really want to starve yourself to death, just get on with it.” He told the Guardian later that he “failed utterly to grasp that she was seriously mentally ill.”
In addition to seeing the illness appear in younger children, Eisler and Simic are also seeing younger girls present with other mental health issues. “We are seeing more young people with a mixed picture of depression, anxiety, and self harm, as well as eating disorder symptoms,” says Simic.
The many misconceptions about anorexia
Anorexia nervosa is a serious mental health condition but many misconceptions swirl around it. Musby lists a few:
“The main one, that it only affects women,” she says. In the UK, 11% of sufferers are men, a likely very low estimate.
“Another easy one—it only affects adolescents.”
And, she added, it’s not true that “you have to look underweight to diagnose anorexia or to have anorexia.”
The biggest one? “That it is a purely psychological disorder—that it is a choice or a coping mechanism or about some need for control over one’s life.”
“People to this day often have ideas that patients are seeking control or that someone in their life caused the eating disorder, all kinds of narratives which are hard to disprove but that the data do not support,” says Steinglass.
Hadley Freeman, who was anorexic and writes for the Guardian, says this is frustrating. “Eating disorders are the only mental illness that people still assume is caused by something identifiable and external,” she wrote. “No sensible person would ask anyone why they became schizophrenic, why they suffer from clinical depression.”
She writes that it is frustrating to see so many people associate the syndromes with just wanting to look thin. “Can we please make the overdue distinction between women suffering from body image issues and actual eating disorders, which are a specific mental illness?”
Then there are people who assume eating disorders are the result of some kind of trauma, or something serious that has happened with the family. They quietly conclude the parents are to blame.
Carrie Arnold, also writing in the Guardian, reflected on how much therapists wanted to assign the disorder to her family:
“I was first diagnosed with anorexia more than 15 years ago. The reason I continued to starve myself despite my failing organs and being forced to drop out of school, the doctors said, was that something was wrong in my family. And as soon as that was sorted out, I would get well. One therapist told me my parents were too controlling. Another said that there was too much pressure on me to be perfect. Yet another suggested that I just didn’t want to grow up, and my mother was afraid to let me leave the nest.”
The problem, she concludes, is “none of these things were true.”
“Sophie no more chose to get anorexia than another child chose to get leukemia or autism,” her mother said. “This illness came out of nowhere, hijacked her brain and messed up the circuitry between her brain and her eating system.”
Anorexia nervosa, by the numbers
There are many kinds of eating disorders: anorexia nervosa, which is characterized by restricting food and precipitous weight loss; bulimia, which involves binging and vomiting; Other Specified Feeding or Eating Disorder (OSFED), which has various subtypes; and Unspecified Feeding and Eating Disorder (UFED).
Parsing statistics on eating disorders is tricky for a number of reasons: Many children are not diagnosed or misdiagnosed, and some do not meet the full criteria for receiving a formal diagnosis of anorexia or bulimia. The diagnostic standards have changed dramatically, and there is more familiarity with the illness. For example, it used to be that girls had to stop getting their period to be diagnosed as anorexic, which precluded anyone who had not started menstruating. Earlier criteria had strict weight guidelines and behavior requirements.
Rates of eating disorders vary around the world. One study that looked at the Netherlands, where all general practitioners are trained to recognize eating disorders, found a significantly higher rate, of 107 adolescent girls per 100,000, in the late 1990s. That figure has since stabilized at 97 per 100,000, still almost double the rate in the UK, which is about 50 per 100,000. Rates for women over a lifetime in the US range from 1% to 4.2% for women; according to the National Institute of Mental Health, 2.7% of teens aged 13-18 years old struggle with an eating disorder.
The illness appears to be growing in children under 13, studies and doctors say. “The data would suggest there are younger kids who are developing anorexia who were not before,” said Eisler.
A UK study published in the British Journal of Psychiatry tried to assess news cases in kids under 13; it found that “it may be increasing in younger age groups.”
This presents certain challenges. Distorted body image or refusal to see the seriousness of low weight is often a symptom of anorexia nervosa, but younger kids are less likely to report these, said Peebles. “They are more likely to report tummy pains,” she said. Younger kids decide not to eat but cannot articulate why. They are more likely to exercise, or exercise compulsively.
One issue is timing: If a child has lost weight and exhibits anorexic tendencies—a preoccupation with food and how to not eat it, for example—but the child has not lost enough weight to warrant a diagnosis under the medical criteria, the child is not technically anorexic. With the changes in diagnostic criteria, Eisler thinks many people who used to receive a diagnosis of “eating disorders not otherwise specified” are now being diagnosed as anorexic.
Not everyone believes increased referral rates for younger children are the result of more kids developing anorexia: it may be improvements in diagnosis, similar to autism. Peebles says she sees many younger patients, but is wary of attributing that to rising rates of the illness, rather than increased awareness among pediatricians who refer patients to her. In her practice, “8- to 12-year-old patients are not uncommon at all—they used to be less common,” she said. “The numbers are up , but is the incidence is truly rising? We are not sure.”
Treatment
In the 1980s, Eisler helped to pioneer a new way to treat anorexia at the Maudsley Hospital. One of the main changes was looking at parents as a potential resource, rather than a target for blame. Called family therapy in the UK, it focuses on keeping kids out of hospitals—unless they were dangerously ill—and harnessing the family as the key resource in recovery. “Our mantra is families don’t cause anorexia but families are the best resource in treatment of anorexia,” says Simic. (The approach is called family therapy in the UK and “family-based-therapy” or “FBT” in the US.)
In family therapy, parents take charge of the eating completely until weight is normalized and healthy eating habits are rediscovered, and then control is gradually handed back to the child.
The challenge is that starving appears to upset the brain’s normal function. “It’s realizing that the way you think and behave comes from how your brain functions, and your brain needs nutrition,” says Musby.
Family therapy has improved short-term recovery outcomes. In a randomized clinical trial published in 2010, around half of teenagers with anorexia treated with family therapy met the criteria for full recovery after a year, compared with 23% receiving standard treatment.
Part of the argument for family therapy is based on research and experience showing that the best treatment is not in a hospital, where other kids which can sometimes spark competitive starving, but at home, with ample support.
With in-patient settings, Eisler says, “we often see the symptoms escalate and there is copying behavior.” As the pathology gets more severe, “they get institutionalized because it is a protected environment. Normal life becomes more distant.” For many patients, however, hospitalization is necessary and life-saving. When a child cannot eat, re-feeding is essential.
That was the case for Sophie: After months of all-day inpatient treatment, she was finally hospitalized. “We couldn’t help her be safe,” said her mother. “She needed the power of a full 24-hour team to help her stand up to the disease.”
There are some advantages to getting the illness earlier, namely that parents can play a bigger role in supporting their child’s recovery because they are still in a pattern of feeding and caring for younger children. Teenagers seeking independence can be more resistant to control from their parents.
But younger children also are less likely to understand the complex emotions they are feeling around food, and when they are asked to eat it to gain weight, it can trigger raw panic. “These kids who have been incredibly gentle kids, they turn into different people when they are asked to eat and gain weight,” said Peebles. “They become demonic. They scream and hit their parents.”
And Eisler says research has also identified heightened risks to children when it strikes at a younger age. For one, they do not have to lose much weight to be in danger. Prolonged starvation can affect bone density and brain function, though much of that can be restored if treatment happens sooner, and is effective.
Then there is the challenge of restoring weight with food that has been repeatedly condemned as “unhealthy.”
“Health promotion messages, and our society’s demonizing of certain foods and body shapes, make recovery extra difficult,” says Musby. “For most people with an eating disorder, health means the exact opposite of the typical health promotion message. They need to eat more of all food types, they need to drop rules about ‘good’ and ‘bad’ foods; many can’t beat the illness while they exercise, and it looks like nobody truly recovers if they keep the ‘skinny’ look that society idealizes.”
Outcomes
Musby wrote her book in part because she felt she had wasted precious time trying to work out how to get her child to eat. When her daughter became ill at 10, the family struggled to figure out how best to help her.
The experience was terrifying. “I recall not being able to convince her that water would not make her fat,” Musby recalls. She is in touch with hundreds of families going through the same thing and said there are some patterns: truthful children become expert liars; throwing food and even plates can become normal as the child tries to resist food, and parents struggle to force eating when it so clearly appears to harm the child. “Some young people cry,” Musby says. “Some get angry—most get angry. They are in fight or flight. When they are given no choice but to eat, they will look for ways of cheating—they put food in their pockets, drop it on the floor.” One mother said her daughter hid food in her underwear.
Many kids close themselves off from their friends, stop sports and extracurricular activities and some have to drop out of school. For many, the effects carry on later in life, even after normal eating habits have been restored.
The good news is that anorexia appearing in younger children is highly treatable. “This is one of the most rewarding conditions in child psychiatry, because you can have a full recovery,” said Simic. Between 60% and 70% of kids seen in at Maudsley are discharged after a year with no further treatment at all (not even therapy—a critical difference from the US, where therapy tends to be ongoing). About 15% will continue to need help managing anxiety and depression, and the rest facing ongoing challenges.
Eisler’s message to parents is simple: If you are worried that your child might be developing an eating disorder, go to a specialist immediately, he says. “Don’t wait and see where it will go.”
Women who are diagnosed as adults have a much tougher prognosis for recovery. “The longer you have the disorder, the harder it is to recover,” Simic says, noting that changes in the brain may be harder to reverse (though not impossible).
Musby has seen all sorts of outcomes. “For some it is treated and it goes, and that’s the end of it,” she says. “For some there is one to two relapses and then it goes. And for some it is something they have to control all their life.”
Sophie was ultimately force-fed, an experience she decided she did not want to repeat. She started eating again and returned to a healthy weight. Her mother describes the experience as “hell” and worries about what adolescence will hold for her daughter. Have they survived the worst of it? Will Sophie relapse? Will they walk away from the illness, or forever live in its shadow?
List of resources:
Eva Musby can be contacted here. In the UK, the Beat youthline can help young people experiencing an eating disorder: 0345 634 7650. Also: Families Empowered and Supporting Treatment of Eating Disorders here. In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14. Hotlines in other countries can be found here.