Anorexia Nervosa: It’s Not a Choice
Anorexia Nervosa is Not Just an “Eating” Disorder.
In the United States alone, about 30 million people suffer from an eating disorder. Although eating disorders affect people of all backgrounds, it is most common among adolescent girls and young adult women. Most haunting of all is that not only do eating disorders have the highest mortality rate of any mental illness, but only a fraction of people with eating disorders will ever receive medical treatment.
Anorexia nervosa is characterized by a distorted body image and a drastic fear of gaining weight. It is sometimes defined by an inability to maintain one’s body weight to within fifteen percent of his or her ideal body weight. It can induce severe dietary restriction behaviors, excessive physical activity, and repeated maladaptive food choices that can result in starvation and even death.
The medical risks and complications tied to anorexia are plentiful. In the early stages of the disease, it’s common for patients to be dizzy, fatigued, and even experience syncope. In the chronic stages, almost every organ can be affected.
Consequences can include:
- dental caries
- gastrointestinal bleeding
- compromised immunity
- bone fractures
- spinal compression
- kidney failure
- heart problems
But, the most important question we must seek to answer now is
Q: “WHY DO SO MANY PEOPLE HAVE THIS DISEASE?”
For a long time, people have assumed that anorexia is solely caused by sociocultural factors and the beauty ideals pervading the “western world”. Although these factors cannot be disregarded, there’s simply more to it than that.
In fact, studies are showing that there are genetic and neurobiological factors that are causing anorexia nervosa. Anorexia nervosa is indeed heritable; heritability ranges from 28% to 74%. It has also been found that some childhood personality traits, including stress, obsessions, fear, rule-abidance, and desire for perfectionism can reveal risk factors for developing anorexia in the future. In addition, during puberty, countless changes in hormones have been shown to interact with the brain’s neurochemistry and serve as the genesis of the disease. Whatever the cause, the fact of the matter is:
A: The brains of those with anorexia nervosa are not normal.
Take a look at these scans:
Before we uncover exactly how and where the anorexic brain differs, watch this TED Talk by Dr. Laura Hill, president and CEO of the Center for Balanced Living in Worthington, Ohio, as she tells listeners what those with the disease are constantly feeling, seeing, and even hearing.
In this video, Dr. Hill expresses the idea that physical illnesses are viewed differently than mental illnesses, and that recovery for mental illness can actually be easier if approached as if it were a physical illness. To elucidate this concept, she reveals the brain biology behind eating disorders and explains that those who suffer from an eating disorder experience a perpetual noise in their thought patterns. She tells listeners that the noise can be so loud that the only way to quiet it is to control it through maladaptive eating habits.
. . .
one of the girls who always hears the “noise”
A PERSONAL STORY
In my hometown of Columbus, Ohio, I had the pleasure of meeting with a girl (who I will refer to as “Ana”) who had been treated nearby at the Center for Balanced Living at one point during her journey with anorexia nervosa. Get to know Ana and the “noise” as I help her tell her story.
. . .
Ana is seventeen years old. She loves to play field hockey, be active, and spend time messing around with her friends. During seventh grade track season, Ana found herself wanting to exercise ALL of the time. Girls were faster than her, but, if she cut back on the junk food–and really just most foods in general– she knew she could catch up. Let’s not neglect middle school, either, which is a time when kids are learning to grow into their bodies and are constantly comparing themselves to each other in the process, not to mention all of the changes happening in the brain. Anyway, before she knew it, Ana was continuously thinking about food and about exercise and then fell into a maladaptive habitual routine of simply not eating. Things escalated quickly, then Ana wasn’t allowed to run track anymore because of her disease.
It seems Ana went from point A to point B in a matter of minutes, and she’ll admit it feels that way. Her eating disorder found her first, and she’ll tell you it became her new best friend. This is what her best friend started to tell her:
“If you eat this, you need to get rid of it.”
and it would never be quiet. This is the noise Dr. Hill refers to. And, even though Ana is better now,
Ana was more than attached to her best friend and found it easier to just shut everyone else out. She couldn’t play sports, she couldn’t go out, she didn’t want to be with her friends, and, most of all, she didn’t want to be in the kitchen. The noise was easier to just block out when she was alone in her room.
Ana started outpatient therapy and kept it up for a few years, but it was mostly just to appease her parents. She met with her therapist and dietician once a week, but treatment became less and less effective as she avoided talking about her eating disorder with her therapist. Who’s to blame her? He couldn’t know what was going on in her head. He hadn’t ever heard the noise.
When Ana walked in to treatment one day weighing 64 pounds, her therapist admitted:
“You are too sick. I can’t do therapy with you anymore. You need to go to treatment.”
To Ana, those were the scariest words in the world; she knew that, if she didn’t go to treatment, she would die. But, even scarier to her was that she knew she would have to eat. She remembers hearing herself say,
. . .
At the end of her sophomore year, Ana packed up her things and said goodbye to her friends and family as she traveled to Tulsa, Oklahoma for a four-month treatment program. Every day, she’d wake up, get weighed, get her vitals, eat with the other girls, go to therapy, eat again, go to school there, eat again, and then go to more therapy. She admits it was the hardest and scariest part of her life with her eating disorder constantly telling her,
“You’re just going to get fat here.”
But, in those four months, she found the greatest friends, the most helpful doctors and staff, and a particularly influential therapist. The girls there understood her–they too heard the noise–and they worked together to get better.
People unaware of the nature of the disease would always tell Ana,
“If you just listen to your therapist and do what she says, you’ll get better. And, just eat! It’s not that hard.”
First of all, to someone with an eating disorder, just eating is the hardest thing in the world. Secondly, yes, therapy did help Ana recover, but Ana’s greatest recovery came from within. A few months ago, she finally let her best friend go. This was the same best friend that she originally thought would make her healthy, skinny, pretty, and happy. When she finally truly believed and wanted better for herself, she realized that her eating disorder was the worst thing for her, and it was only out to get her.
. . .
When I asked Ana about what the doctors and therapists had told her about the science behind the disorder, she revealed the most central theme to this campaign. As researchers are starting to figure out,
Yes, you choose not to eat.
Yes, you choose to over-exercise.
Yes, you might even choose to throw up.
But, you didn’t just wake up and say, “I want to starve myself.”
We need to start by viewing anorexia as an illness– not a choice.
. . .
Viewing Anorexia as a Physical Illness
Anorexia nervosa is characterized by stress, anxiety, appetite suppression, and a distorted body image, just to name a few. While these might be partially explained by societal pressures or a desire to be thin and in control, studies reveal neurobiological reasoning behind each of these traits. As expressed earlier, the anorexic brain is simply different– let’s take a look at some of the differences in neurotransmitter release and activity in some key regions of the brain.
“What are neurotransmitters?” you might ask. Neurotransmitters are chemical messengers in the brain and nervous system that work to regulate mood, appetite, sleep, memory, etc., depending on where and when they are released.
Serotonin is a neurotransmitter that can be involved in regulating stress, sleep, eating, temperature regulation, and muscle movement. With a healthy balance, it is known as the happy, calming neurotransmitter. However, it is overproduced in the brains of anorexics, and this imbalance actually creates continual stress, anxiety, and a feeling of being out of control. In response, anorexics might try to gain control by limiting their food intake. This reduction of calories then decreases serotonin production to the level of someone without the disease, providing a sense of calmness and then reinforcing this maladaptive restrictive behavior.
Cortisol is another neurotransmitter that is overproduced in those with anorexia. This neurotransmitter prepares the body to deal with oncoming threats. It also inhibits functions that might be detrimental or simply useless in a fight-or-flight situation. For example, in high quantities, cortisol would suppress the digestive system, the reproductive system, and growth processes. When the body is under continual stress, the stress-response system remains turned on and continues to produce cortisol. Anorexics, overwhelmed by the “noise”, experience this long-term activation of the stress-response system, and the increased amount of cortisol significantly suppresses their appetite.
TO ANSWER SOME OF YOUR QUESTIONS…
How can people with anorexia simply not eat? Aren’t they hungry?
Let’s first look at the (dorsolateral) prefrontal cortex. This region of the brain is responsible for our self-control, and it often curbs our impulsive behaviors. In the anorexic brain, the dorsal prefrontal cortex is extremely active, so it works overtime to keep those with the disease from “giving in” to feelings of hunger.
In addition, it’s neurobiologically easier for anorexics to develop (bad) habits. The (dorsal) striatum, the region of the brain linked to habitual behavior, is much more active in anorexics.
Furthermore, food actually tastes different to people with the disease. Studies reveal significantly less activity in the right insula, which is the structure involved in self-awareness of body states (such as hunger and pain) and then connects with other parts of the body to tell it how to respond.
One imaging study analyzed sweet taste perception among those with and without anorexia. When people without anorexia were given sugar, they had immense feelings of pleasure, revealed by extremely active right insulas. On the other hand, for people with/recovered from anorexia, the images showed far less activity in this region. Overall, it’s clear that people with anorexia have lower-than-usual activity in a number of systems that respond to hunger and appetite, explaining how they can starve themselves to the point of death.
Are people with anorexia really scared of food and gaining weight?
Actually, yes. In a study done at the Central Institute of Mental Health in Mannheim, Germany, researchers used an fMRI while anorexic patients and controls were shown pictures of their own bodies. In the anorexic patients, there was much more activity in the right amygdala, the sensory cortex, the thalamus and hypothalamus, the hippocampus, the right gyrus fusiformia, and the brainstem region– the brain’s “fear network”.
Additionally, anorexics have a faulty reward system. When most people eat, a neurotransmitter called dopamine is released that gives off a feeling of pleasure. However, according to research from the National Institute of Mental Health, for people with anorexia, the dopamine released in regions such as the dorsal striatum actually causes anxiety rather than pleasure because of overly-sensitive dopamine receptors. Moreover, the ventral striatum, also involved in the reward circuitry, is hypersensitive in the anorexic brain and can hinder the patient’s enjoyment of food.
Do people with anorexia really see themselves as much heavier than they truly are?
Often, yes. Body-image distortion isn’t “made up”– it’s real. Although people with anorexia have normal visual perception, they do feel and see themselves as large bodied, showing deficits in visuo-proprioceptive integration. In a study comparing the strength of the size-weight illusion (SWI) in individuals with anorexia to control participants, researchers found that the individuals with the disease had reduced SWI. Because SWI has a lot to do with visual appearance and cognition, the researchers believe that their finding shows decreased integration of visual and proprioceptive information in individuals with the disease, which might explain why simply looking in a mirror would not correct a person with anorexia’s distorted body image. The researchers’ finding also indicated a reduced reliance on visual input in judgments of weight and a greater reliance on proprioceptive information in anorexics, explaining that anorexics do utilize a different strategy than healthy individuals in judging their own weight and size. In addition, the researchers found abnormalities in the inferior parietal lobe, a region of the brain responsible for spatial perception, which also explains why anorexics have a distorted view of their size relative to the space around them.
But, we have some good news for you: some amazing places are already starting to implement this research into their treatment.
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The Center for Balanced Living:
an organization that is ahead of the game when it comes to the neurobiology of eating disorders
Established in 2000, the Center for Balanced Living is the only free-standing, non-profit organization in Ohio that provides specialized eating disorder services. Led by President/CEO Laura Hill, PhD, who has received national recognition with her work with Walter Kaye, MD, UCSD, the Center developed the first neurologically-based treatment for anorexia nervosa and have begun testing its impact with clients and families throughout the US and in other nations. Approaching food as “medicine,” clients and families are provided individualized meal plans and are educated on how to “dose” food.
Play this Q&A game that’s part of the Family Eating Disorder Manual from the Center for Balanced Living: How much do you really know?
Current Research at the Center
An Innovative Family Based Treatment for Adults with Anorexia Nervosa Using Insights from Neurobiology by The Center for Balanced Living and Eating Disorder Treatment and Research Program at UC San Diego. Funded by the National Eating Disorders Association Feeding Hope Grant.
What’s Going on in My Brain? Development of New Instrument Focusing on the Neurobiology of Eating Disorders by The Center for Balanced Living, Neuropsychiatric Research Institute in North Dakota and Eating Disorder Treatment and Research Program at UC San Diego, California.
ANGI Anorexia Nervosa Genetics Initiative by The University of North Carolina Chapel Hill (global initiative). This is a multi-national research study designed to discover the genetic factors that contributed to the development of anorexia nervosa.
Published Work at the Center
Neurobiologically informed treatment for adults with anorexia nervosa: a novel approach to a chronic disorder by Stephanie Knatz, PhD; Christina E. Wierenga, PhD; Stuart B. Murray, DClinPsych, PhD; Laura Hill, PhD; Walter H. Kaye, MD. Published 2015 in Dialogues in Clinical Neuroscience.
The Venus Fly Trap and the Land Mine: Novel Tools for Eating Disorder Treatment by Laura Hill and Marjorie Scott. Published 2015 in Eating Disorders: The Journal of Treatment & Prevention.
Temperament-based Treatment for Anorexia Nervosa by Walter H. Kaye, Christina E. Wierenga, Stephanie Knatz, June Liang, Kerri Boutelle, Laura Hill and Ivan Eisler. Published 2015 in European Eating Disorders Review.
Brain Differences Help Explain Eating Disorders by Shannon Firth. Published 2014 in Scientific American MIND.
Current Treatment at the Center
Inpatient and day hospital treatments are effective in weight restoration, but they are incredibly disruptive to the patient’s family, social, and educational life. Clearly, weight restoration alone is not sufficient for recovery, and relapse, as we’ve seen, is incredibly common. The Center of Balanced Living understands the importance of using neurobiological research as basis for care, so they practice evidence-based treatments for eating disorders, including:
- Enhanced and Integrated Cognitive Behavioral Therapy (ICAT and CBT-E): designed for integration into routine community addiction treatment programming with the goal of reducing stress and maladaptive food behavior. The components include 1) patient education about their disorder; 2) anxiety reduction (employing centering and breathing retraining techniques); and 3) cognitive restructuring. In this type of treatment, the patient learns to consider him/herself as the agent of change.
- Family Based Therapy (FBT): designed to assisting parents in their efforts to help their child in his/her recovery from anorexia nervosa and to return the patient to normal development unimpeded by the eating disorder.
- Dialectical Behavioral Therapy (DBT): cognitive behavioral approach designed to emphasize the psychosocial aspects of treatment. The term “dialectical” stems from the idea that bringing together opposites in therapy–acceptance and change– is more effective than solely focusing on either one.
- Acceptance and Commitment Therapy (ACT): encourages patients to develop mindfulness skills to help individuals live in ways consistent with eerie personal values while simultaneously developing psychological flexibility.
Visit the Center’s website to learn more.
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Change is happening. Researchers are starting to pick up on key neurobiological differences in those with anorexia nervosa, and these differences are going to be the answer to creating better treatment. Places like the Center for Balanced Living are already starting to change treatment to favor research findings. Most importantly, more and more people just like you are finding out that anorexia is NOT a choice. This is a movement. But, it needs fuel.
Right now, there’s not enough of it. Researchers can’t do their jobs because of inadequate research funding. Despite the prevalence of eating disorders, the amount of funding that researchers receive hardly compares to other diseases with a lower prevalence.
Illness Prevalence NIH Research Funds (2011)
Alzheimer’s Disease 5.1 million $450,000,000
Autism 3.6 million $160,000,000
Schizophrenia 3.4 million $276,000,000
Eating disorders 30 million $28,000,000
People are hardly aware of the research that’s being done. You are one of few who knows that eating disorders, especially anorexia nervosa, are not simply a choice influenced by society’s values. Others need to know this too, or else change isn’t going to happen. There’s a need for funding, and there’s a need for awareness.
How are YOU going to help keep up the change?
Knowing what you know now, please click on the following image to answer:
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