[by Kendra Hovey]
In her TEDxTalk, Dr. Laura Hill revealed a breakthrough that counters not just conventional wisdom, but human instinct. For anyone whose life has been touched by an eating disorder, what Hill has to say is essential. It’s also essential for anyone who is interested in how we look at problems and how we solve them.
According to Hill, just as things go haywire in the pancreas when diabetics eat, things go haywire in the brain when anorexics eat. Food sets in motion a psychological storm both painful and noisy—and you can see that storm on an fMRI. Hunger and taste centers remain dull. Dopamine is flat, the amygdala gets agitated and the decision-maker, the prefrontal cortex, is confused. Meanwhile, the area of the brain responsible for our sense of our external self, or physical body, is showing a disturbance “off the charts.”
So…the patient who insists she is not hungry, that the food doesn’t taste right, that the day is easier without it, and “eating is bad for me,” has—it seems—been right all along. This is extraordinary.
It’s also unworkable, or so one would think. Food is not optional. Yet, this flip in accepted thinking is helping a number of Hill’s clients. Out the window goes all the talk of enjoying food, the body’s desire for food, and attempts to normalize the diet, and in its place food has become medicine. Just as an endocrinologist prescribes insulin, Dr. Hill prescribes meals, working with each client to find the dosage that works. What she says now is: Take your medicine, it won’t taste good and there will be side effects, but it will keep you alive.
This discovery is life-changing for those with anorexia, as well as for their loved ones. It also reveals something interesting about how all our brains work. It took a really advanced and expensive technology to ask a simple question: What if the patients are saying something that is actually true?
Of course, to seriously consider this, one has to override personal experience and something basic to human survival. I don’t mean to oversimplify—I, for instance, am not going to go on a search for the aliens that are speaking to my aunt through her microwave—but when facing a problem, especially a particularly intractable one, it’s not a bad reminder to ask what, and who, we believe and don’t believe, as well as, what is the question we are not asking?
I Had No Idea!
Most of us know about anorexia, even have one or two educated opinions about it, so when I spoke to Dr. Hill I had to ask, Why hadn’t we heard about this before?
“It’s just now coming into the public domain,” Hill answered. Her TEDxTalk is a start, along with the new Family Eating Disorder Manual. Published in August with Hill as the lead author along with colleague David Dagg, it includes two chapters on the neurobiology of eating disorders.
The research, though, has been on-going for quite some time, but 2009 was a seminal year. That’s when Walter Kaye of UC San Diego published the article that, as Hill describes it, “introduced and set in course a new direction in our understanding of anorexia nervosa.” Over time, more studies added more information, and Hill has been working with Kaye’s team to interpret and chart the results and “pilot” new approaches to treatment. Hill says it’s been gratifying to have the patients part of the solution: “I would take the results to them and say ‘it looks like at this stage of the illness you may not be registering taste’ and the client’s are going ‘uh…yeah’—well,” she pauses, “we had never thought to ask the clients that clinically.”
As the neurobiology became clearer, Hill had her own I-had-no-idea moment. When she would share this feeling with her clients, “they would just start crying” she recounts, “and they would say, ‘finally, finally somebody is understanding—now, can you tell my family?’ ”
So Is The Media Off The Hook?
If eating disorders are neurobiological, does this effect the prevailing theory that they are sociological—tied to media portrayals and body image? Yes, says Hill, but not how you might think: “The biology actually helps us to understand the sociology and the psychology.” With eating disorders the disturbance in the brain is so great that decision-making centers can be almost incapacitated, which increases vulnerability to social messages—and the social messages are invariably to diet and to be skinny. “Somebody looks to the external to help guide them,” explains Hill, “only to find that the external is helping to make them sicker.”
What About Psychological Explanations Related To Control?
To family members witness to the rigidity and pickiness, anorexia can sure look like an expression of a controlling personality. “In fact,” says Hill, “it may be a 180—I’m so out of control, I’m literally eating blind.” And just as a blind person perhaps counts steps and taps with a cane or is guided by a dog, a person with anorexia has to tap their way through eating. “That’s when the light bulb really went off for me,” says Hill, “when I saw what was going on in the brain, I understood it’s not at all about being controlling, it’s about trying to get some control.”
From there, it was a short step to another realization: “Let’s use what appears to be the problem and make it part of the solution.” Taping into the rigidity and the patient’s existing rituals around eating, she and her team created healthy rituals. “We work out a plan—Plan A, Plan B, Plan C—they eat it, get used it, they don’t have to decide or question how many bites, and we find their anxiety comes down and the volume of the noise in their head may come down too.”
About That Noise In Their Head…
Hill sampled a recording of that noise during her talk. Asked how she created it, she was quick to first credit her co-author David Dagg for the idea, then explained how she has notebooks full of her clients’ descriptions (“overwhelmed,” “cloudy,” “vicious,” “loud,” “louder”) and phrases (“Fat, fat, fat;” “you stupid idiot;” “what to write with?” “I can’t handle that;” “I’m so full;” “I don’t feel anything”). Her clients would critique each version, until eventually the recording closely mirrored their experience. She’s currently creating a similar recording for her clients with binge eating disorder. “They tell me it sounds differently,” she says.
Bulimia & Other Eating Disorders
Hill shares that there are not yet many fMRIS for bulimia and ever fewer for binge eating. fMRIS are expensive; cohorts need to be small. Anorexia presents similarly, but bulimia, says Hill, is “heterogeneous,” so that what proves true for one cohort may not extend to all the various presentations of the illness. Nonetheless, Hill is working on a similar brain map for bulimia but, she says, “there are many gaps.”
For 20 years, cognitive behavioral therapy has shown to be a valid form of treatment for bulimia, but there has not yet been one well-researched, single, effective treatment for anorexia. Says Hill: “We kept assuming that when re-fed, patients would feel better and get on with life and we kept seeing relapse and we didn’t understand exactly why.” [Relapse rates are high; anorexia also has the highest death rate of all mental illnesses.]
This suggests that should Hill’s pilot approach prove medically valid, physicians might be quick to adopt it. Hill fully expects that patients will be educating their doctors. “As they text and tweet about their own experiences,” she says, “it’s not going to take long for this to surface.”
What Say The Naysayers?
Neurobiology changes the paradigm so much, initially there’s been “a bit of a wait-a-minute-wait-a-minute reaction,” says Hill. “But,” she continues, “for 30 years we’ve known this is bio-psycho-social phenomenon, it’s just that we’ve looked at the biology as a consequence, not that it might be a contributing factor of the illness or the extent to which it is actually helping to maintain the illness.”
Which Came First?
Whether the neurobiology is the product of starvation or the cause, Hill says, “the jury’s still out.” In the acute stage when body mass is low, biology is clearly a driver of the disease. But looking at those who have recovered and maintained a stable body weight for over a year, some start to get back the ability to taste. Some don’t. Even those that do don’t experience pleasure in eating.
Will This Breakthrough Advance New Medicines?
“The field is looking at medications,” says Hill, “we have seen, though, that the SSRIs [commonly prescribed] don’t even touch the disturbance in the brain.” They are searching for ones that will bring it down, but, she adds, “bless their hearts they get it both ways—meds have side effects.” Along with continued 3D imaging, genetic-based testing may uncover new avenues for developing effective medicines.
Asked what kind of response her talk is getting she says, “It started from the moment I stepped off the stage.” A father came up to her tears thanking her for helping him understand his daughter. A woman who had anorexia told her that she has always had to eat the same meal and that this has always embarrassed her. “But now,” she said to Dr. Hill, “I think it’s okay, it’s as okay as anyone.”
Hill has been careful about bringing these new findings to the public. “It’s been my caution because I didn’t want to interpret anything erroneously,” she explains. But, “the beauty in this,” she says, “is people discovering—when they hear this and say, I had no idea!”