HEALTH

Eating disorders: Most people underestimate the severe danger, and the road to recovery

Nancy E. McCarthy
USA TODAY NETWORK - NEW YORK
Wanting to slim down for her wedding was what panted the seed for an eating disorder for Stephanie Cantos.

Stephanie Cantos and her husband, Dr. Andrew Cantos, attended a wedding in June 2016, just days before she would start treatment for an eating disorder. When the wedding cake was served, Cantos took a few polite bites. Then she noticed that some guests weren’t eating their slices.

“I lost it,” says Cantos. She was immediately filled with self-loathing at her lack of control, followed by a desire to eat every piece on the table. Then she felt a sense of panic that those morsels she did consume would make her fat.

The couple had to leave the reception. Dr. Cantos took his wife up to their hotel room, but nothing he tried could calm her. She raged, screamed and cried in despair.

“We eventually did go down to the party but by that point, it was not the same,” he says. 

It wasn’t really about the cake. Cantos was diagnosed with anorexia nervosa (AN), one of the three major eating disorders (bulimia nervosa and binge eating disorder are the other two). Surprisingly, AN isn’t really about food. Cantos severely restricted calories and exercised excessively to cope with her escalating anxiety and depression. She compares her obsessive dieting and exercise regime to an alcoholic who reaches for a drink to calm down but can’t stop at one.

These insights came after she began treatment, which she says may have saved her life. And she isn’t overstating. According to the National Institute of Mental Health, anorexia nervosa has the highest mortality rate of any psychiatric disorder. People with AN, especially women, can literally starve themselves to death — if they don’t commit suicide first.

Root of the problem

“I have always been a perfectionist, type A, and hypercritical of myself,” says Cantos. “I found it very difficult to accept myself as I was.”

She constantly compared herself to others and, in her mind, often fell short. Cantos insists these dark thoughts didn’t stem from any external influences — she has supportive parents and had a happy childhood growing up in Webster.

While a storm may have been brewing for years, she remembers that her innocuous effort to slim down for her own wedding to Andrew in 2013 had planted a seed. Tracking calories and exercising produced the desired effect: a thin, beautiful, smiling bride.

Fast-forward two years: The accomplished couple was living in Queens, New York. Her husband was a second-year radiology resident while Cantos attained a doctorate of physical therapy and was working at an orthopedic clinic as a physical therapist.

The flip side of success: Cantos says she has always been a perfectionist, which contributed to the problem.

Cantos tried on her “slightly too small” engagement photo dress and decided to “get back in shape” and fit into that dress again. “This is the point I believe I fell down the rabbit hole,” Cantos says.

At first, she seemed to be embracing a healthy lifestyle, watching what she ate and working out to reach her previous “ideal” weight. But she kept going, cutting out food she deemed bad and refusing to eat anything not logged into a tracking app.

Cantos began declining social invitations that affected her workout routine and also avoided gatherings that didn’t have “safe” food available, like fruit or vegetables. Previously enjoyable dinners out with her husband became challenging and eventually impossible, leaving Cantos feeling guilty and tearful.

“I was incredibly withdrawn, short-tempered and easily agitated,” she says. It was difficult to get through the day treating patients. She had trouble thinking clearly or focusing on conversations.

It was a slow, downward spiral for a year. Though she tried to cover her behaviors and conceal her feelings, her husband suspected AN, and he insisted that she get help.

The numbers are people

According to the National Eating Disorder Association, national surveys estimate that 20 million women and 10 million men in the U.S. will have an eating disorder at some point in their lives.

Locally, the Western NY Comprehensive Care Center for Eating Disorders (WNYCCCED) estimates more than 27,000 people living in Monroe County have an eating disorder. The center partners with community agencies, creating a support network of resources for patients and their families to get the coordinated care they need within a 30-county western New York region.

Dr. Taylor Starr is the Western NY Comprehensive Care Center for Eating Disorders' associate medical director and also treats patients in the Child and Adolescent Eating Disorders Program at Golisano Children’s Hospital — the only western New York hospital with a program dedicated to the exclusive care of this patient population.

In 2012, Dr. Starr completed her adolescent medicine fellowship at Golisano Children’s Hospital and remained here to devote her professional life to treating people with eating disorders. Through the hospital, Starr treats in-patients up to age 18 and outpatients up to age 26. She also provides medical care to people of all ages at The Healing Connection (THC), an eating disorders treatment center in Rochester.

“When people are on the road to recovery, they work very hard,” says Dr. Starr. “To be there to support them while they take their lives back is so rewarding.”

Adolescence is an especially vulnerable time, when eating disorders typically emerge, but disorders can also develop in adults, as in Cantos’ case, while others can recover at a young age but later relapse in adulthood. 

Throughout all life stages, Dr. Starr acknowledges some crucial care gaps in western New York. For one, there are no residential programs at treatment centers for children and adolescents. For adults, there are also no residential treatment programs, no long-term in-patient medical programs or doctors specializing in treating people over the age of 26.

Dr. Starr and her colleagues at Comprehensive Care Center are on a mission to address these gaps through professional training programs, advocating for an adult in-patient program through University of Rochester Medical Center (URMC) and adding residential options through The Healing Connection, which provides outpatient programs.

Bridging the divide

Last January, URMC launched Project ECHO, a tele-education program specializing in eating disorders. Project ECHO (which stands for Extension for Community Healthcare Outcomes) is a national model adapted locally for regions that lack specialty providers, offering training to treat specific diseases.

The local effort, managed by Comprehensive Care Center, has held 20 virtual eating disorder clinics in the past year, using real-life clinical cases and instruction for nearly 200 professionals from a mix of disciplines: physicians, nurses, dietitians, behavioral and college health professionals across western New York.

Dr. Starr explains that effective care hinges on all members of a multidisciplinary team understanding their roles in treating the disorders.

Comprehensive Care Center director Dr. Mary Tantillo characterizes eating disorders as “diseases of disconnection.” She championed the use of Project ECHO here and also founded The Healing Connection in 2010, using a family and relationship-based method, emphasizing the importance of connection and repairing disconnection caused by these disorders.

Recovery

Many AN patients report feeling scared to start eating, out of fear that they won’t be able to stop.

When malnourished, hunger cues turn off (the body’s defense from feeling starvation). Eventually there is no hunger, or early satiety, which perpetuates restrictive eating. Once individuals start eating again, hunger cues return and it can trigger the eating disorder.

Physical consequences can be devastating, so the earlier the diagnosis and treatment, the better. Physiological issues include serious cardiac conditions. For women with AN, estrogen production shuts down and can lead to infertility, possibly reversible when the patient is weight-restored. One irreversible condition is osteopenia or osteoporosis.

The brain also needs nourishment to do the psychological work, says Dr. Starr.

“The average length of recovery from restrictive anorexia nervosa is six years.”

But the journey is rarely linear. It’s like a spiral staircase, with three steps forward, two steps back along the way. And the illness can be so strong that recovery recommendations are often rejected. Cantos recalls initially bucking the concept of ceasing exercise, even temporarily.

Cantos is now 31 and in recovery after some starts and stops. Before her husband’s Strong Hospital fellowship brought them back to Rochester in June, Cantos had successfully completed a day treatment program at Monte Nido in Manhattan. She met regularly with a therapist, dietician and a medical doctor specializing in adults with eating disorders.

Here in Rochester, she has a family medicine doctor since there are no local adult eating disorder specialists and she “sees” her New York City-based therapist and dietician via Skype sessions—because she’s happy with her team.

“Looking at pictures now from when I was really sick, sometimes I see ‘emaciated’ and sometimes I don't. It's like having a fun house mirror for eyes,” says Cantos, who is now weight-restored but feels “absolutely overweight.”

Her husband sees positive signs. “I am thankful for every day that she continues to try, despite it being tough,” he says. “I appreciate when she is open with her feelings instead of me being left to wonder. The disorder runs best with deceit and lying, so getting past that with open and honest communication is key.”

It is still a mental battle, but Cantos knows making recovery-oriented decisions is choosing a life worth living. “This recovery journey has been the hardest thing I’ve ever done, but it has rewarded me with such insight into who I am as a person and what makes me tick.”

To find local resources, visit nyeatingdisorders.org or call (585) 276-6102.

Three Major Eating Disorders

(Edited from www.nationaleatingdisorders.org)

Anorexia nervosa (AN) is characterized by weight loss, difficulty maintaining appropriate body weight and, for some, distorted body image. People with AN typically restrict calories and certain foods and exercise compulsively. Some might purge by vomiting or laxative use. Although this disorder most frequently begins during adolescence, an increasing number of children and older adults are being diagnosed. Medical consequences can affect every organ system. The risk of death is highest in individuals with this disorder.

Bulimia nervosa (BN) is a serious, potentially life-threatening eating disorder characterized by cycles of binge eating followed by compensatory behaviors to prevent weight gain such as self-induced vomiting, taking laxatives or diuretics, or exercising excessively. Many people with BN struggle with co-occurring conditions such as self-injury or substance abuse. Binge-and-purge cycles affect the entire digestive system and can lead to electrolyte and chemical imbalances in the body that affect the heart and other major organ functions.  

Binge eating disorder (BED) is a severe, life-threatening disorder characterized by recurrent episodes of eating large quantities of food (often secretively, rapidly and to the point of discomfort); a feeling of a loss of control during the binge; experiencing shame, distress or guilt afterwards; and not purging to counter the binge eating. It is the most common eating disorder in the United States. The health risks of BED are most generally those associated with clinical obesity, such as cardiovascular disease.