Heather Purdin had run out of options. Aged 33, she had been suffering from anorexia nervosa for more than two decades and her weight had plummeted to that of a small child, an all-time low for her. Her case worker, out of frustration and desperation, suggested hospice care as a way to spend her remaining days in relative comfort. But for the first time in years, Heather was sure of one thing: she desperately wanted to live.

Treating anorexia, which is characterised by self-starvation and an inability to maintain an adequate body weight, seems absurdly simple on the surface: just eat and gain weight. It is something Heather and the millions of others afflicted by eating disorders have heard countless times. The problem is that it is never that simple. Heather has long since lost track of the number of times she has been admitted to hospital for low body weight, electrolyte imbalances caused by starvation or self-induced vomiting, or thoughts of suicide. In hospital she gains weight, but as soon as she is discharged she promptly returns to her old ways and loses what little weight she has gained. And so for more than 20 years, she has remained hopelessly, incurably, stuck.

Up to one in five people with chronic anorexia may die as a result of their illness, either owing to the direct effects of starvation and malnutrition or to suicide. This makes it the deadliest of all psychiatric disorders. Although scientists have made tremendous progress in decoding the underlying biology of eating disorders and in finding ways to intervene in cases of teenage anorexia before the disorder becomes chronic, this has not translated into effective treatments for adults.

A chance posting on Facebook last autumn, however, brought hope for the first time in years. In Ohio, there was an experimental five-day intensive programme to help adults with anorexia. What made this one different was that it used the latest neurobiology research to shape its goals as well as the way treatment was delivered. Since research confirms that most patients struggle to make changes to their entrenched behaviours on their own, patients also had to invite up to four support people to join them on the residential programme. Heather asked her father and her sister, and began raising the funds to fly them all to Ohio.

“I need this to work,” she said. “I have nothing else to try.”

Despite its reputation as a quintessentially modern disorder, anorexia is nothing new. The first medical report of the illness appeared in 1689, written by London physician Richard Morton, who described it as “a nervous consumption” caused by “sadness and anxious cares”.

Even as recently as the 1970s, anorexia remained something of a clinical oddity – a disease that doctors rarely saw, let alone had a clue how to treat. When psychologist Laura Hill saw her first anorexia patient at a university counselling centre back in 1979, she had never even heard of the disorder: “Her father was in the science department there and I had to ask him what anorexia was,” recalled Hill. “He told me she was unable to gain weight, afraid of food.”

Rates of anorexia had been steadily climbing since the 1950s, but it was not until the death of the singer Karen Carpenter in 1983 that the disorder became a household word. She died from heart failure resulting from anorexia nervosa, and all of a sudden newspaper stories and after-school TV specials began to feature teenage girls “dying to be thin”. Besides highlighting the spectacle of a healthy, attractive young girl’s determination to starve herself, the storylines usually focused on the family dysfunction that psychologists believed lay at the heart of the disorder. Parents were told not to be the food police, that anorexia was a misguided search for control. Only when they let their child be fully in control of their own life would the anorexia be resolved.

Psychiatrist Walter Kaye was not convinced. He had been asked to help finish an anorexia study for the US National Institutes of Health in the early 1980s, despite not having done research into eating disorders before. While talking with the participants, he noticed something unusual.

“I was just kind of struck by how homogenous the symptoms were,” he said. Because the patients seemed so similar in terms of symptoms and temperament, he believed there had to be something in their biology that was causing anorexia – and he dedicated himself to finding out what it was.

In the early 1980s, anorexia had been seen by the medical community as a deliberate decision by a petulant teenage girl: she was selfish, vain, wilful. Since she had chosen to become ill, she simply needed to choose to get better. She needed to become a fully formed individual, separate from her family, and had to rebel against the cultural ideal of thinness at all costs.

Research by Kaye and others, however, dismantled these preconceptions (not least that anorexia only affects girls) and completely changed how we think about the condition. Psychologist Laura Hill had to rethink her whole approach: “Many times, I want to call up all my old patients and apologise for getting so much backwards,” she said.

Hill began to keep a file full of notes about what she thought was causing anorexia, what her patients believed, what seemed to work and what did not. After a few years, she entered a PhD programme to better help her patients. But even with several research articles to her name and, ultimately, decades working at the forefront of treating and researching eating disorders, she realised that the treatment advances were not reaching adults with anorexia. She was not the only one. Across the field, psychologists, psychiatrists and dietitians have noted that positive treatment outcomes for adults with anorexia remain abysmally low. Less than half recover fully, another third show some improvement, but the rest remain chronically ill.

“They go for many years, and they’ve relapsed over and over again, and they have the highest risk of dying,” said Kaye. “I think all of us are feeling that this is a serious, often deadly disorder for these people, and we don’t have good approaches, and we don’t understand enough about the causes.”

For adolescents with anorexia, a ground-breaking treatment developed at the Maudsley Hospital in London in the 1980s called family-based treatment (FBT) has significantly improved short-term recovery outcomes. It puts parents temporarily in charge of making food and exercise decisions for their child and places a priority on normalising weight and eating habits. In a randomised clinical trial published in 2010, around half of teenagers treated with FBT met criteria for full recovery after a year, compared with 23% receiving standard treatment.

Nothing has been remotely that successful for adults with anorexia, and there is no easy explanation as to why. One reason may be that adults have simply been sicker for longer, believes Angela Guarda, director of the Eating Disorders Program at Johns Hopkins University: “The longer you have anorexia, the more anorexia creates physiological changes in the body and the brain that then create a self-sustaining cycle. You do it today because you did it yesterday, no longer because you decided to go on the Atkins diet when you were 15 or because you broke up with a boyfriend and you decided to lose weight. It’s no longer about that.”

Many people with anorexia don’t grasp that they are, in fact, sick. While parents generally sign their children into treatment, the power to do so vanishes when the child turns 18. Adult patients can also stop treatment if it gets too difficult – and it often does, because challenging the behaviours associated with eating disorders can create extreme anxiety. A long‑term, chronic eating disorder often ends up alienating friends and family – the very people who are needed to support the patient through the recovery process.

The longer anorexia lasts, the more the physiological changes in the body and brain create a self-sustaining cycle

Clinicians, like their patients, are desperate for something better, some way not only to help adults with anorexia normalise their eating and gain weight, but also to help them stay well. “In anorexia, you get their weight up and they go home straight from inpatient [where] they’re fed from a tray, and they’re expected to know how to eat in a restaurant, eat in a cafeteria, eat in social settings when they haven’t been eating with anyone for a decade,” Guarda said.

On a warm spring weekend in 2006, Laura Hill stopped in the middle of mowing her lawn. She had spent the morning reading one of Walter Kaye’s articles on the neurobiology of anorexia, and was familiar with how Kaye and his colleague Stephanie Knatz were beginning to use neurobiology in designing new treatments for adolescents. It occurred to Hill that she could do something similar for her adult patients. She dashed inside to grab a pad of paper and a pencil, where she scribbled a few notes before returning to her lawn. Several passes later, she had another insight and again stopped mowing to add to her notes. This went on all afternoon. It took until dusk to finish the mowing, but by then, as well as a neatly cut lawn, Hill also had the outline of a new type of adult anorexia treatment that would harness the strengths of people with the disorder and try to compensate for their weaknesses.

She continued to work on the outline, asking her patients at the Center for Balanced Living in Ohio for input on what they found helpful. A few years later, she teamed up with Kaye and Knatz, who further refined the idea based on their experiences at the University of California, San Diego. There, they had remarkable success with a five-day intensive FBT programme for adolescents. Rather than seeing someone once a week, which might not be enough to be effective, or taking them away from their family and putting them in an artificial environment for a residential programme, they had insisted that the family come and stay too. Encouragingly, some young adults – living at home or supported by their parents – had also taken part, suggesting that this format could work with older patients as well.

“As opposed to having people step in for an hour and talk about what happened over the week, we’re actually seeing what happens live. That gives us the possibility to intervene at the time, as opposed to coaching people on what they should do ‘when circumstances come up’,” said Knatz.

In 2013, Hill, Knatz and Kaye applied for a grant from the US National Eating Disorders Association to fund a pilot study of what they called Neurobiologically Enhanced with Family/Friends Eating Disorder Trait Response (NEW FED-TR). Every aspect of the programme was based on what researchers understood about what happens in the brain of someone with anorexia, the goal being not just to improve treatment but also to reduce blame and guilt among sufferers and families. To that end, the new programme would involve carers and loved ones as an integral part of treatment, creating a team that could work together to fight the eating disorder. Responsibility for recovery would remain firmly in each client’s hands, but some aspects of recovery that tend to be sticking points for adults with anorexia could be outsourced to their support people as needed.

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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 was that none of these things were true. The other problem was that, despite discussing these factors at length, I remained profoundly ill. I would eat in the hospital or at a residential treatment centre, where I was sent when my condition deteriorated, but then I would return to my old ways upon discharge. I was 29 years old, and despite two advanced degrees, I had to come to terms with the fact that I didn’t have the first clue as to how to feed myself appropriately. My once-vibrant life had narrowed to the number on the scale and my next meal. Nothing else mattered, and no one could figure out why.

It wasn’t until nearly a decade after I was diagnosed that a therapist told me that, not only was my eating disorder no one’s fault, the personality traits that were driving the anorexia (perfectionism, attention to detail, a drive to achieve) could actually be beneficial. I learned about some of the biology that explained why I was so vulnerable to anorexia, and why not eating actually made me feel less anxious and less depressed. Instead of demonising my parents as the cause of the anorexia, we needed to utilise them as supports to help me get better. The shift was profound. What we created was a specialised anorexia treatment programme with a clientele of one: me. Food was described as medicine, and I was expected to eat everything I was served. I would rather have jumped out of a plane without a parachute. Meal by meal, snack by snack, however, the eating disorder began to loosen its grasp.

Now, nearly six years later, I do not describe myself as “fully recovered”. I still follow a food plan that helps me decide how much I need to eat. I have entered into a fragile detente with my weight, grudgingly accepting that I am mentally and physically healthier in my current state, even if I feel like evidence of a new species of land whale most of the time. Nor am I free of relapse. I have had two major relapses in the past few years, one of them rather recently. My organ systems are no longer nearly as forgiving as they were when my disease started. My bones are irreversibly damaged, and it doesn’t take much to throw my heart into complete chaos. Despite all of this, I have managed to create a life worth living and that, in and of itself, is a feat for someone who was repeatedly written off as uncooperative and untreatable.

Instead of demonising my parents as the cause of the anorexia, we needed them as supports to help me get better

In my years of being involved with the eating disorder community, I have seen a profound shift in the way we think about eating disorders. Although far too many people are still told that their disorder is “about control” or that there’s nothing anyone can do until a person chooses to get well, many parents and sufferers are learning about the complex web of biological and environmental ingredients that come together to create an eating disorder.

On an unusually mild Monday morning in December 2015, Heather Purdin was fiddling with her ponytail, just as she always does when she is nervous. She was booked into the five-day programme for adults with anorexia, and the centre was a short drive from the hotel, across the freeway interchange to the back of a wooded business park. Heather’s body mass index, or BMI, was very low now – all muscle and softness stripped from her body, leaving only sinew and bone. A baggy shirt and scarf could not conceal how ill she was. But she was not on her way to a hospital or a hospice. Flanked by her father, sister and best friend, she entered the Center for Balanced Living to take her place on the pilot of the NEW FED-TR programme. And despite her fears, a giant grin lit up her face.

Inside the centre, the treatment room looked like an ordinary kitchen. Long, grey counter tops line one wall and an island; there was a large stove, a sink and a fridge. Beau Barley, a tall, thin 20-year-old with bleached blond hair and a two‑day-old beard, was cooking an omelette for breakfast while his parents prepared their own meals. Beau was on his second day of the programme.

“OK, clients, check in with your supports to make sure you’ve got enough to eat,” called the programme’s dietitian, Sonja Stotz. She listened in as Beau showed his meal of eggs, toast, butter, milk and fruit to his parents.

Beau suffered from obsessive–compulsive disorder (OCD) as a child, having to turn off lights in a certain way and avoid all the cracks on the pavement. Every time he heard a siren, he had to ring his mother because he thought he might have caused an accident by not doing one of his rituals right.

He had always been sporty, and his anorexia started with a simple desire to be a better runner on his high school cross‑country team. He amped up his mileage, running for longer and longer each day and eventually training year‑round. The sport he loved became a compulsion. But overtraining eventually took a toll and he was sidelined by a severe stress fracture. His only thought as his leg was being x-rayed in the hospital was that he needed to cut back on his food if he wanted to stay in shape for next season. As his mother pushed him out of the emergency room in a wheelchair, she asked him what he wanted for dinner. “A salad,” he replied.

From there, Beau became more and more obsessed with eating “healthily” and returning to running. At first, his weight was stable. But as his running obsession returned, his weight plummeted. In the summer before he started university, he went through his first formal treatment programme at the Center for Balanced Living, attending group therapy during the day, eating his meals at the centre and returning home every night. Things started to look up, but Beau relapsed during his first year at university. Over the past summer and autumn, he has tried to make progress with his eating disorder, but the exercise compulsion is harder to shake. When his mother called the centre to see if he could return, they recommended NEW FED-TR. And there he was, showing his parents what he had cooked for himself this morning.

The programme uses a meal plan that assigns each individual a certain number of choices or “exchanges” from each food group for every meal and snack. Beau discussed his exchanges with his mother, telling her how the food on his plate added up to his prescribed meal. Satisfied with his choices, Stotz moved on to assist one of the three other families in the kitchen. Beau’s family sat down at the table and, as breakfast began, Hill and Stotz suggested fun games to play as a distraction, to decrease the anxiety all of the clients felt around eating. The less anxiety they felt, the more likely they were to successfully complete the meal, which served as their medication.

In the morning sessions, Hill gave the clients and their families a crash course on eating disorder neurobiology. Eating disorders typically begin in adolescence. Although the exact circumstances that trigger the onset of anorexia are not clear, nearly all cases begin when a person fails to meet their energy needs, placing them in a state of what researchers call negative energy balance – burning more calories than they eat. For some, a weight-loss diet precipitates the eating disorder; for others, it is increased sports training, a growth spurt, an illness, stress, even new dental braces. For most people, being in a negative energy balance is profoundly uncomfortable. That is why dieting often makes people impulsive and cranky. But those with a predisposition for anorexia have a completely different experience: starvation makes them feel better.

Kaye’s work with women who have recovered from anorexia nervosa found unusually high levels of the neurotransmitter serotonin in the cerebrospinal fluid that bathes the brain, and he believes these levels were likely also present before the onset of anorexia. Although low serotonin levels are linked to depression, high serotonin levels are not good either, as they create a state of chronic anxiety and irritability. As many as three-quarters of those with anorexia had suffered from an anxiety disorder before their eating disorder began, most commonly social anxiety and OCD.

The body synthesises serotonin from the amino acid tryptophan, which we get from food. Eat less and you get less tryptophan, and hence less serotonin. For people predisposed to anorexia, therefore, starvation reduces the anxiety and irritability associated with their high serotonin levels. The problem is that the brain fights back, increasing the number of receptors for serotonin. This increased sensitivity means that the old negative feelings return, which drives the person to cut back even more on what they are eating. Any attempts to return to normal eating patterns wind up flooding the hypersensitive brain with a surge of serotonin, creating panic, rage and emotional instability. Anorexia has, in effect, locked itself into place.

Heather Purdin and her team saw this first-hand as Hill asked the different groups of clients and supports to use wool, taken from Hill’s massive collection of weaving supplies, to wind the client’s hands into place. Heather’s team rapidly pinned her hands and arms in front of her face. This, Hill said, was the anorexia in action. Heather was now as stuck physically as she was mentally. Getting her functioning again meant weaving her supports into her mental “loom”. The team struggled with this, especially when Hill asked Heather what she was going to do differently. In sheer frustration, she slammed her knotted hands onto the table in front of her.

“It’s not working,” she wailed. “I can’t change.”

The tears started and it seemed they would never stop. But something had shifted.

“I realised I wasn’t completely crazy,” Heather said later. “It was a huge relief. It is real and I’m not making it up and I’m not a complete loser.”

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Recovering from anorexia, Hill said, is like learning to navigate around landmines. They can be deadly, and they can derail recovery. One of the biggest struggles for people with anorexia is making decisions: a first-year university student on the programme, who asked not to be named, admitted that she can stand in front of the fridge for hours trying to decide what to have for lunch. Frustrated, she often shuts the door without eating anything.

“People with eating disorders have many amazing qualities,” said Hill. The goal of the programme is to make these traits work for an individual as much as possible, and to enlist loved ones to fill in for the parts of the brain that might not be working properly. The exact details of this were hammered out by each family throughout the week in a “recovery support agreement”. Skipping meals or snacks or not gaining weight as appropriate could result in consequences that are agreed in advance, such as leaving university or eating more meals with family members.

Recovering from anorexia is like learning to navigate around landmines. They can be deadly, and they can derail recovery

“It’s helpful for people with anorexia because they like rules, they like structure, they don’t like the unknown, so they have a pretty good idea of what’s going to happen if they’re not able to eat and gain weight. And our data is suggesting that may be a useful approach,” said Kaye.

A 2003 study identified five personality traits that increased the risk of developing an eating disorder: perfectionism, inflexibility, having to follow the rules, excessive doubt and caution, and a drive for order and symmetry. Other studies have found links between anxiety, perfectionism and anorexia. Adults with anorexia get stuck on details and have trouble zooming out to see the big picture, which can make it difficult to make decisions. They also have difficulty mentally switching from one task to the next.

For too long, said Hill, eating disorder professionals have been focusing on these traits as weaknesses when that is not true. To succeed at scientific research, for instance, obsessionality and attention to detail is almost a must. Since people with anorexia use rules and routines to “succeed” at their eating disorder, they can also learn to use them to succeed at recovery. It sounds like a small shift, but for anorexia sufferers like Heather and Beau, it makes all the difference in the world.

“Make your quirks work,” Heather quipped with a smile.

In healthy individuals, determining what and how much to eat is controlled by a variety of factors, including what is available, how hungry the person is and what they like. Not so in anorexia. Kaye’s use of functional magnetic resonance imaging (fMRI) of the brain has teased out other important details. Unlike most people, whose brains respond strongly to rewarding things such as sweets, people with anorexia are generally far more sensitive to punishment (the removal of something pleasant) than reward.

Another study found that the brains of women who had recovered from anorexia responded significantly less to sugar water than healthy controls, and they found sweets less rewarding when hungry. Kaye says these results may indicate how they are able to continue starving even while food is plentiful, since people with anorexia find food less rewarding and thus have less motivation to eat. Tests also showed a preoccupation with future harm at the expense of what might be needed in the present moment.

“One reason that people with anorexia are able to starve themselves is that when they get hungry, the parts of the brain that should be driving reward and motivation just aren’t getting activated,” Kaye said.

Hill played an audio recording of one of her former patients re-enacting the anorexic thoughts that tormented her while she ate – an endless stream of “I can’t eat this. I’m going to get fat. I’m ugly. I’m disgusting. I’m weak. I hate myself. I can’t do this. I’m so pathetic, just pathetic, a weak pig.” It went on for more than 10 minutes.

Many of the parents had walked into the programme frustrated and angry at their child’s seeming refusal to eat. When they heard the recording and the sheer amount of “noise” that their children endured, their anger dissipated.

“I get it now,” Beau’s mother said, dabbing at her eyes with a tissue. “I get it.”

Heather’s week at the programme was life-changing: “For the first time, someone got what I had been saying all along, that I had a biologically based brain disorder,” she said. “They worked with me instead of against me.”

By December 2015, nearly 25 families had participated in NEW FED-TR, and more pilot groups are in the works. Feedback, Hill said, was uniformly positive, even from those with anorexia – pretty rare for a treatment programme that requires a person to face their deepest fears six times a day, eating three meals and three snacks. It is too soon to say whether the programme has been effective in helping adult anorexia sufferers move towards recovery, but for Heather it marks the first time she has actually believed in her own ability to get better.

Illustrations by Magnus Voll Mathiassen

This is an edited version of an article that appears on Mosaic. It is republished here under a Creative Commons licence

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