Please Note: This section contains several articles written by Dr. Jeffrey DeSarbo and others about eating disorders. These articles are intended to help provide readers with a more conceptual understanding of eating disorders than the usual diagnostic or self-reported descriptions that are more common. You are encouraged to read all the articles on this page to enhance your understanding of eating disorders.
While the core treatment of eating disorders remains based in psychotherapy, behavioral modifications and close medical management, researches are discovering more and more about the science and brain functioning of patients who suffer with eating disorders such as anorexia and bulimia nervosa. The complex and distressing thought processes associated with an eating disorder often mystifies and confuses both the patient and other outsiders including family, friends, and treatment providers. Today, neuroscientists are learning more and more about how the brain is effected and, in turn, effects the course and prognosis of an eating disorder.
As the neuro-scientific and biological factors of eating disorders become demystified, many patients and loved ones have been able to lessen their confusion and self-blame and recognize the role that genetics and brain biology plays with their condition. Onset and recovery is not only defined by a change in observable behaviors, but there are many functional and anatomical changes in the brain itself that helps to explain these changes as they are happening.
Thoughts originate in the brain. We can tell when one is thinking or processing information when we see brain data and electrochemical signals with medical equipment such as EEGs, CAT scans, MRIs, PET Scans and SPECT. Still, we only see the signals and not the thoughts. When one suffers with an eating disorder, we know from what they tell us and the things that they do that their thoughts are overwhelmingly distressful, all consuming and often distorted. A person with an eating disorder has a certain way in which they hear things, say things, perceive things and do things. The brain, it can be said, is speaking a foreign language that is not familiar to the individual. Yet, it sort of makes sense to them, but to no one else. The thoughts are coming from their brain, but their brain is working differently than it once did.
Neuroscientists have been making significant discoveries in finding out how and why the brain is working differently. These findings appear to be major contributing factors that can help explain what is happening with someone’s brain, mind and body that can cause and perpetuate an eating disorder. For instance, with conditions such as anorexia nervosa, neuroimaging has shown us that there is a loss of brain cells in many different regions of the brain (1,2). Now researchers and trying to decipher how this brain cell loss effects the thoughts and behaviors associated with an eating disorder and how much of the brain can be restored with recovery (3). For one example, researchers discovered that with anorexia nervosa, there can be cell loss in the brain’s parietal lobe region that is directly associated with one’s internal thoughts that create an intense drive-for-thinness (4).
But the language of the brain science is not a simple this-causes-that story. Multiple factors and brain findings have shown similar effects. Estonian researchers discovered that certain changes in brain chemistry with a specific serotonin neurotransmitter found in girls with eating disorders may also be responsible for a strong drive-for-thinness (5). Specific ways of thinking and the resulting behaviors and symptoms are more often a result of multiple biological factors that come together and lead to eating disorder pathology.
Even the physiological functioning of the brain can contribute to the symptom expression of an eating disorder. A study from the Children’s Hospital in Boston, Massachusetts, showed that there can be a change in brain blood flow patterns in women with anorexia nervosa who have body image distortions (6). These blood flow changes are similar to patients who have psychotic disorders where their perceptions are also distorted and may help explain the cause of such significant alterations in self-perception. Anorexic individuals who see themselves as “huge” are experiencing a reality that true to them, although different than what everyone else sees.
Researchers from Hiroshima University in Japan are also discovering the different brain activity that exists with body image processing in the brains of men compared to women. When males and females are subjected to unpleasant words regarding body image, men primarily have brain activation in the cognitive areas of the brain while women have a unique activation in the fear and emotional centers of the brain (7). Studies like this can contribute to an understand of why there are more women then men who develop eating disorders and why the time to recovery is so much greater since women have such an adverse fear reaction to negative body image ideas compared to their male counterparts.
The intense emotional dysregulation often seen with an eating disorder may also be better understood by looking at other brain changes. Another part of the brain that can be effected by an eating disorder includes the anterior cingulate cortex or ACC. This is a region that noted author and neuropsychiatrist Dr. Richard Restak describes as “where cool rationality meets heated emotions.” Researchers at the University of Heidelberg in Germany discovered that there was brain cell loss of grey matter in the ACC of patients with anorexia nervosa and that this cell loss did not appear to change with weight restoration leaving the questions to whether this finding occurred as a result of the anorexia or if it may pre-exist, making it a risk factor to developing an eating disorder (8).
The main point of this article is to provide introductory evidence and support to the complex underpinnings of eating disorders. There is no simple explanation as to why an eating disorder occurs and no simple solution to a quick resolution. The brain is the most complex organ in the body and it is continuously effected with an eating disorder. Continued scientific research is needed to make major breakthroughs in treatment protocols and recovery. In the meantime, it would do patients, families, clinicians and the public well to know that there is growing evidence that helps explain how the thoughts and behaviors associated with an eating disorder are related to biological processes that are not always under the control of the individual but with treatment and recovery, most of these biological processes do return to their healthy states.
Trying to Understand an Eating Disorder (Part II)
By Jeffrey DeSarbo, D.O.
The language of an eating disorder resides in the hieroglyphics of the brain and neuroscience. Just as the scientists and linguistic experts had to decipher cave drawings, Egyptian symbols and the writing on the scrolls, neuroscientists throughout the world are trying to decipher the brain functioning in people with eating disorders.
Essentially, existence entails what you are thinking about from moment to moment. And what you think about from moment-to-moment determines the quality of your life. But where do our thoughts come from? The language of thought appears to originate in the brain. We can tell when one is thinking or processing information in the brain when we see electrochemical signals with neuroimaging on CT scans, MRIs, PET Scans and SPECT. Still, we only see the signals and not the thoughts.
When someone suffers from an eating disorder, we know from what they tell us and the things that they do that their thoughts are overwhelmingly distressful, all consuming and often distorted. Imagine the quality of life that goes along with these moment-to-moment thoughts. A person who suffers with an eating disorder has a certain way in which they hear things, say things, perceive things and do things. The brain, it can be said, is speaking a foreign language that is not native to the person. It is as if one began speaking a strange language tomorrow and they cannot understand why. It sort of makes sense to them, but to no one else.
One of our primary monitoring questions for treatment and recovery is, “what percentage of your waking thoughts is about food, weight, calories, body image and other eating disorder thoughts?” Nearly every patient who begins treatment will report that these things preoccupy 90-100% of their thoughts. Anyone who has such obsessions and preoccupations with anything, good or bad, will soon find himself or herself in great emotional distress.
To help families understand what an eating disorder truly is, I often say to them, “if a patient comes into my office and is 80 pounds and five-foot, six-inches, but then report no preoccupations with food, their weight or behaviors to change their weight, no desire to lose weight or fear to gain weight, and no drive to engage in any maladaptive patterns to monitor or alter their appearance, then it is unlikely they suffer with an eating disorder. On the other hand, if someone comes into my office and is “normal weight,” eats three meals daily, does not engage in eating disorder behaviors, but still reports that 90-100% of their free thoughts are spent preoccupied by those eating disorders thoughts, that this scenario is where the greatest pain and suffering occurs. Recovery, despite what others can see behaviorally, has not been achieved. One’s quality-of-life, their moment-to-moment thoughts, are still so overwhelming that full participation with life remains impossible.
This brief essay is to inform families and the public of what is most difficult for those who suffer with an eating disorder and to remind treatment providers that weight and behaviors are not the only goal. That while other people can only see visual cues associated with an eating disorder such as weight, food intake patterns and eating behaviors, purging behaviors, excessive exercise and other dysfunctional behaviors, it is important to note that the most important part of recovery is what gets better in the head. The goal is a return to freedom from the hijacked mind: a return to more control of one’s moment-to-moment thoughts, and a chance for a better quality-of-life.
When Eating Disorders Consume the Family
by Susan Jungman, MHA, LMHC, ED-180 Program Director
As if there is not enough stress brought upon an individual suffering from an eating disorder, cases of anorexia and bulimia nervosa can also wreak havoc on the families and loved ones of those who suffer. “There’s a common saying in the world of eating disorder treatment: the eating disorder consumes the individual, and the individual consumes the family,” states Dr. Jeffrey DeSarbo, a board certified disorder psychiatrist and eating disorder specialist in Garden City, N.Y. Dr. DeSarbo states that treating eating disorders is one of the most frustrating conditions in psychiatry because they are often misunderstood by people who never had an eating disorder, there are few qualified eating disorder centers and therapeutic treatment specialists, the cost of quality treatment can be out-of-reach for many, and the treatment itself can take years and has the highest mortality of any condition in psychiatry.
It is estimated that over 7 million women and 1 million men in the United States suffer from an eating disorder, and according to the National Institute of Mental Health, only 33-44% are receiving treatment. Meanwhile, a study by the National Association of Anorexia Nervosa and Associated Disorders reported that 5–10% of anorexics die within 10 years after contracting the disease; 18-20% of anorexics will die within 20 years and only 30–40% ever fully recover. In fact, the mortality rate associated with anorexia nervosa is 12 times higher than the death rate of ALL causes of death for females 15–24 years old. When families learn these facts, it is easy to understand the discontent that arises when seeking treatment.
Frustration often arises because family members seek answers to questions that have no simple answer. Why did this happen? Did we do something wrong? How long will it take to get better? What can I do to make things better? Why does she hate herself? The answers to these questions and others are complex and different for each person and can take a while (often too long) to uncover. Genetic, biological and environmental factors must combine in a certain way to trigger an eating disorder. Parents, spouses and family members can do” everything right” and an eating disorder can still arise. Some people recover in less than a year while others may have an eating disorder for a lifetime. Family members have little support and few resources to help another who suffers. And professionals understand that the cause of an eating disorder has little to do about one’s physical attributes. In fact, as Dr. DeSarbo puts it, “saying a person has an eating disorder is because they’re concerned about weight and appearance is akin to saying an alcoholic drinks because they are thirsty,” and as a patient once said, “telling me to just eat is like telling a drowning person to just swim.”
A sense of helplessness can start early on with treatment. With such serious life threatening conditions, it is unfortunate that most physicians receive very little training in treating patients with eating disorders. Adolescent gynecologists physician Dr. Aimee Leo of Deer Park, NY states, “I’ve learned that I cannot use the same exam approach and conversation I use with non-eating disorder patients that I need to use with eating disorder patients.” Doctors who work with eating disorder patients know the “lingo,” the “tricks,” and the proper method for conducting thorough examinations and medical monitoring for safety. “For over a year, our pediatrician kept telling my daughter to just eat more and he’d see us in a couple of months,” says Maryanne, a mother of a 17 year-old girl with anorexia nervosa. “It wasn’t until I was referred to adolescent medicine specialist Dr. Martha Arden that she felt her daughter was being cared for properly with office visits on a weekly basis until she was determined to be medically stable.
Despite the complicated and potentially dangerous medical aspects of eating disorders, the bulk of the treatment often rests in the hands of non-medically trained clinicians. For this reason, it is important to utilize psychotherapists and nutritionists who are members of professional eating disorder organizations and receive specialized training. “Nearly all therapists and nutritionists will say they treat eating disorders, but there is a difference in a person who has treated 5 cases in their practice and another who has treated 500,” say Meg Maginn, a therapist with over 20 years of experience in the field. “It took me another 2 years of specialized training in eating disorders after my masters degree in nutrition to fully get the intricacies of working with patients who have severe anorexia and bulimic behaviors,” says Judi LiVigni, a registered dietician who works with Dr. DeSarbo.
For families, finding such specialists is not always easy, especially because many do not accept insurance. One reason it is hard to find a qualified disorder therapist on an insurance panel is because the cost of ongoing training is higher than for other specialties and patient management can be very time consuming. Cara-Mier Capone, a former Senior Therapist at the Renfrew Center in NYC and Long Island, now the Clinical Director at ED-180 states, “I may be spending 45 minutes in a one-on-one therapy session with a patient, but then I may be spending another hour or more coordinating and discussing care with the patient’s physician, psychiatrist, nutritionist and family.”
This treatment team approach not only requires families to research multiple treatment providers, but the costs add up. If one is fortunate enough to find treatment providers on an insurance panel, even co-pays for therapy, eating disorder clinicians and tests can be costly. Without insurance coverage, proper care can cost hundreds if not thousands of dollars a week and the cost of care for patients who require residential treatment can be over $30,000 monthly. Patients have been known to sell their engagement rings and families have taken second mortgages on their homes to pay for treatment.
Activists for insurance coverage of eating disorder treatment are often disheartened. Los Angeles Insurance Attorney Lisa S. Kantor represents patients and families whose insurance claims have been refused or denied, even after they where initially approved for coverage. At a recent eating disorder fundraising event in NYC attorney Kantor discussed how insurance companies often refuse reimbursement because they know that most people will not pursue a claim, especially if they have to go through a legal process. She also noted that even if a court finds in favor of a patient, the only financial award is for the cost of care which they would have been responsible for anyways.
In an attempt to help patients and families, the private sector has been trying to step-in. Not-for-profit groups such as Project HEAL raises funds to help send eating disorder patients in need to treatment centers, many of whom have agreed to lower their cost or offer scholarships to offset cost for those in financial need. Dr. Benita Quakenbush-Roberts, owner and Director of Avalon Hills Eating Disorder Treatment Centers in Utah, reports that her center given out over $2 million in scholarships. Locally, Dr. Jeffrey DeSarbo has donated over $25,000 in scholarships to Project HEAL for his intensive outpatient program ED-180 in Garden City and last year provided an additional $150,000 in assistance to cover treatment costs.
But even if one finds and can afford an experienced and qualified treatment team, the patient and the condition continuously eats-away at the fabric of the family unit. Parents become consumed in their child’s condition and behaviors. Spouses feel alienated. There is a sense of wanting to rescue and save, but feelings of helplessness and despair predominate. The language of an eating disorder is foreign to others and common questions such as “do I look fat,” cannot be properly responded to offer only leading to more aggravation for the patient and family members. While the patient accepts their eating disorder identity, family members can begin to feel that they loose their own identity as their loved one suffers. It is advised that families to seek out parent support groups, attend public lectures and seminars about eating disorders, and consider getting their own therapist with eating disorder experience who can provide support and guidance to help maintain their own well-being in the process.