“I’m afraid my daughter is going to die.”
After five years of pursuing treatment for her daughter’s anorexia at leading facilities nationwide, an Atlanta area mother wasn’t pulling any punches. Speaking on the condition of anonymity, she sat beside her husband at the family’s kitchen table as they described their daughter’s illness.
“We would sit for two to three hours at the table that we’re speaking to you from [now and] struggle to get her to eat a bite of food,” the girl’s father said via videoconference.
“The pediatrician was absolutely uneducated about eating disorders and still probably is. There was nobody here to help us,” said her mother, a registered nurse. “There was no one here to help me with a 13-year-old, mentally unstable, physically declining child.”
The couple’s concern for their daughter’s welfare is well-founded. Anorexia nervosa has the highest mortality rate of all mental illnesses.
Some patients struggle in silence for years before seeking treatment. One California woman has lived with a severe form of the disease for more than a decade, according to reports by ABC news and Buzzfeed. When her body weight reached 40 pounds, she and her husband began a successful fundraising campaign to help cover the costs of care at the ACUTE Center for Eating Disorders at Denver Health.
Founded in 2008, the Denver facility is the only acute care hospital unit in the United States prepared to deal with the two-headed demon that is severe anorexia and its progressive physical manifestations of starvation and the debilitating mental fragility that perpetuates a patient’s inability to eat.
A Misunderstood but Deadly Disease
An estimated 30 million Americans suffer from a clinically significant eating disorder at some time in their life. Anorexia takes an intense psychological toll on patients. Depression is often a co-diagnosis.
Starvation wreaks havoc on the body as well as the psyche, and people with anorexia suffer from a long list of physical symptoms that, at their most severe, are life-threatening.
Roughly 6 percent of those diagnosed with anorexia will die from the disease. Half will die from suicide. The other half will succumb to the physical complications that result from severe starvation — most commonly cardiac arrest.
Finding treatment becomes more difficult as the disease advances. The more physically ill the patient, the less likely they are to be admitted to a facility that specializes in treating the psychiatric component. And when it comes to medical care, few hospital-based healthcare providers understand the disease’s psychological components.
“[Doctors] will make little remarks or soft questions, or comment that my legs are the size of their arms, and I should make sure I eat,” said Angela Liu, a 31-year-old technical recruiter in Washington, D.C., who was hospitalized twice for severe anorexia as a teenager. “Unless you’re an eating disorder specialist, it’s hard to know how to treat somebody.”
That dismissive approach on the part of healthcare providers is one of Dr. Jennifer L. Gaudiani’s pet peeves.
“If [a woman with anorexia] went to her local emergency department, even if they were a superb hospital with superb doctors, they would tell her, ‘Well, yeah, you’ve got a little liver failure, and yeah, you’re underweight. You need to eat more.’” said Gaudiani, who is the associate medical director of ACUTE.
“The whole point is that she can’t do that. That’s her mental illness. She wants not to die, but she can’t convince herself she needs to eat enough.”
A Mental Health Diagnosis … with Caveats
In some cases, anorexia can be treated at home with a combination of good medical care, nutritional counseling, and therapy.
Too often, however, people who have anorexia are successful at hiding their disease for months to years and only submit to inpatient care at the pleading (or demand) of loved ones. Family members and patients who cycle through relapses and remissions describe the disease as “sneaky” and “insidious.”
Though Liu describes the illness as “warfare on the neurological, psychological, physical front,” she acknowledges that, to this day, she still struggles to eat enough, and the feeling of being full after a meal can be emotionally triggering.
The common misconception that anorexia is only about restricting food intake overlooks the compulsive behaviors characteristic of the disease.
Diagnostically, patients are either restrictive, meaning they lose weight through excessive dieting or fasting, or purging, meaning they induce vomiting or abuse laxatives or diuretics to maintain a low body weight. Both types may engage in excessive exercise to burn off what little food they consume.
People with anorexia are routinely described by experts and loved ones as obsessive, high achieving, perfectionistic, highly intelligent, and competitive.
“This set of personality traits is set up in a society that is thin-worshipping, fat-phobic, and diet-obsessed,” Gaudiani points out. “It’s a perfect storm for why patients are getting anorexia and getting really sick with it.”
Descriptions of living with the disease are harrowing. In a Quora post, Liu described her early teen years:
“I took two-hour aerobic classes and returned home for two more hours of surreptitious stair-climbing as my parents watched television downstairs. I got up in the middle of the night to pace the bedroom or stand on tiptoe. I sat on the edge of the seat — determined not to relax and let my fat recline and absorb into my body. Before I knew it, the only thing I was doing in my life was starving and exercising.”
The father of the young woman with anorexia in Atlanta remembers his own feelings of helplessness in the face of his daughter’s illness. As his daughter advanced through her teen years, the corporate executive and his wife set up “contracts” with the aid of therapists and medical staff to help promote nutrition and maintain proper weight.
“We were doing everything in our power to keep our daughter from going to the bathroom an hour after meals — all the things that you’re supposed to do. I turned my back on her, and I just remember seeing her with her head down in the kitchen sink,” he said. “Somebody in her state is going to do whatever it takes to do whatever they think they need to do — in her case, that was purging.”
One Place for Treatment
Working with a team of therapists, nurses, dieticians, social workers, and psychiatrists, Gaudiani and ACUTE’s founder, Dr. Philip S. Mehler, provide care for severely ill adult patients whose disease has progressed so far that they require life-saving interventions.
Admission criteria require that patients be less than 70 percent of their ideal body weight, or have a body mass index (BMI) below 15. In a woman who is 5 feet 4 inches tall, that’s about 85 pounds.
Though there is debate about the usefulness of BMI, it’s routinely used in the medical field as a parameter for healthy weight. A BMI of 18.5 or below is considered underweight. ACUTE’s average patient, according to Gaudiani, has a BMI of 12.5 — that’s a 5-foot 4-inch tall, 73-pound woman.
Gaudiani and Mehler are the only internal medicine physicians to hold Certified Eating Disorder Specialist certification in the United States. Like Liu, Gaudiani believes the specialization is crucial to treating patients with the disease.
“It’s not that we have a special laser beam that no other hospital has that gets these patients to eat,” Gaudiani said. “It’s back to the absolute fundamentals of clinical medicine. You have to have competent, experienced communicators who know the medical and emotional side of this.”
Doctors Don’t Get It
Anorexia treatment is generally seen as the duty of psychiatrists and therapists. But with resulting malnutrition, medical intervention is often unavoidable. That leaves patients in a perilous limbo, according to Gaudiani.
“Patients with really serious anorexia fall through the cracks. The medical people feel ‘She’s too crazy for me. She’s too much of a handful. She doesn’t even want to get better.’ And the mental health people say, ‘She’s way too medically fragile for me,’” Gaudiani said.
A severe anorexic’s health is threatened by brittle bones, impaired temperature regulation, hair loss, heart murmurs, cessation of menstruation — the symptoms are innumerable. Severe episodes of hypoglycemia from not eating can cause loss of consciousness and even death.
Another fatal complication of severe anorexia is refeeding syndrome — a problem first discovered after the Holocaust, when emaciated concentration camp prisoners began to eat again, only to die several days later because electrolyte imbalances caused their hearts to stop beating.
As patients receive tube feedings, intravenous fluids, or begin to increase calorie consumption, screening for this potentially fatal change in fluid and electrolytes requires a trained eye. Some doctors wouldn’t even think to watch for it.
While the starving body may have obvious complications — metabolism will slow to conserve calories, leading to a decreased heart rate and low blood pressure — other clinical indicators might be missed or misinterpreted by providers unfamiliar with the disease. This can cause significant delays in proper treatment of both the physical and psychological symptoms of the disease.
“[Doctors] may not know what to do as they look at [a patient’s] blood tests, so she may get a slew of inappropriate blood tests that are expensive and sometimes invasive,” Gaudiani said. “One of our former patients was admitted to a nationally renowned university hospital and spent six weeks there with zero weight gain.”
Medical Decision Making in an Unstable Mind
Dieticians and psychiatrists who treat people with anorexia when they’re admitted to a hospital for complications are often unprepared.
Gaudiani says that more often than not, a psychiatric consult in a hospital setting will determine that a patient is “fit to make medical decisions” with little or no acknowledgement that the patient has been refusing meals, secretly exercising in their room, or purging what they’ve eaten. Even after residential treatment at facilities specially designed to treat anorexia, relapses are common.
“Hospitalization won’t cure you until you are ready to be cured. It’s a stop-gap measure,” said Liu. “Especially since most of us that end up in there were forced to be there.”
That forced treatment highlights a legal issue common in the treatment of anorexia. Although some people experience relapses into middle and even old age (one-quarter of ACUTE’s patients are over 40), the onset of the disease is usually in the teen years.
Highly intelligent teenagers with obsessive tendencies don’t take kindly to being told what to do. But despite anorexia’s distinction as the deadliest mental illness, inpatient treatment is almost always voluntary.
“Unlike drug addiction and some other types of mental illness, what we’re finding out is that you can’t involuntarily have someone committed,” said the Atlanta mother, whose daughter recently turned 18 and now has the legal right to refuse to let her parents be involved in her care. Just three weeks ago, she was back in the hospital but refused to allow her parents to see test results or discuss treatment with her providers.
“The nurses and the dietician were really good. The fact that my daughter cut me off is not their fault. That she would not allow us access to her healthcare is legal,” the young woman’s mother said. “But she was very mentally ill and physically ill. And they knew it.”
As with any illness, insurance issues abound. Inpatient care — an extended stay in a facility specializing in eating disorder treatment — has to be both in-network and deemed medically necessary. Professionals may recommend a 60-day stay, but insurance will cover only 10 days.
Some insurance companies will require that a patient’s BMI reach a certain low point before hospitalization is considered a medical necessity. Most anorexia advocacy groups have detailed tips on submitting insurance claims — with strong recommendations for retaining an attorney.
The Road to Recovery
Like many who suffer from anorexia nervosa, Liu is a high-achiever and self-identified type A personality. She fits Gaudiani’s description of most of her patients: highly sensitive, intelligent, and acutely perceptive.
Liu maintains several blogs and writes eloquently on a number of topics. They include her frustrations with bad resumes, dating, and her ongoing struggles with perfectionism. But when discussing her recovery from anorexia, she acknowledges a lack of insight or, at least, a loss for words.
“I can’t completely explain how my recovery happened. I think with a lot of eating disorder patients, their game plan is to get the hell out and get back down to their pre-hospital weight. That was my game plan,” said Liu. “But the second time, something just revolted in mind. I was just so tired, I couldn’t do it anymore. I don’t know how it happened. … From that time, I just said I couldn’t do it anymore. So the only choice I do have is to get better.”