Why severe anorexia is so difficult to treat (2023)

Anorexia is the deadliest of all mental illnesses. So why is it so difficult to get adequate treatment, especially for people with a severe form of the disease?

"I'm afraid my daughter will die."

After five years of seeking treatment for her daughter's anorexia at major centers across the country, an Atlanta-area mother retired. On condition of anonymity, she sat with her husband at the family kitchen table as she described her daughter's illness.

"We sat at the table that we're talking about [now] for two or three hours and we fought for her to eat something," the girl's father said via video conference.

“The pediatrician knew nothing about eating disorders and probably still doesn't. There was nobody here to help us,” said the mother, a nurse. "There was no one here to help me with a mentally unstable and physically declining 13-year-old boy."

The couple's concern for their daughter's well-being is well founded. has anorexia nervosahigher mortality rateall mental illnesses.

Some patients struggle in silence for years before seeking treatment. A California woman has been living with a severe form of the disease for more than a decade, according to reportsabc newsjthe sum. When her body weight reached 40 kilograms, she and her husband started a successful fundraiser to cover the cost of her care at the hospital.ACUTE Center for Eating Disordersat Denver Health.

Founded in 2008, the Denver center is the only hospital intensive care unit in the United States prepared to deal with the two-headed demon, severe anorexia, and its progressive physical manifestations of hunger and debilitating mental frailty that perpetuate disabilities . eat. .

Read more: Photos of Skinny Models Really Causing Eating Disorders? »

A misunderstood but deadly disease

An estimate30 million Americanshave a clinically significant eating disorder at some point in their lives. Anorexia has an intense psychological impact on patients. Depression is often a co-diagnosis.

Hunger wreaks havoc on both body and mind, and people with anorexia suffer from a long list of physical symptoms that, in their most severe forms, are life-threatening.

About 6 percent of people diagnosed with anorexia die from the disease. Half die by suicide. The other half will succumb to the physical complications that result from severe starvation, most commonly cardiac arrest.

As the disease progresses, finding a treatment becomes more difficult. The more physically ill the patient is, 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 medical professionals in hospitals understand the psychological components of illness.

"[Doctors] make little remarks or gentle questions, or they comment that my legs are as long as their arms and I have to watch my food," said Angela Liu, a 31-year-old technical recruiter in Washington, DC, of ​​the was hospitalized twice as a teenager for severe anorexia. "Unless you're an eating disorder expert, it's hard to know how to treat someone."

This dismissive approach to healthcare professionals is one of Dr. Jennifer L Gaudani.

"If [a woman with anorexia] went to the local ER, even if it was a great hospital with great doctors, they would say, 'Well, yes, you have a little bit of liver failure, and yes, you're underweight. You need to eat more,'" said Gaudiani, ACUTE's associate medical director..

“The problem is that she can't. This is his mental illness. He doesn't want to die, but he can't convince himself that he needs to eat enough.

A mental health diagnosis... with caveats

Anorexia can, in some cases, be treated at home with a combination of good medical care, nutritional advice, and therapy.

Very often, however, people with anorexia manage to hide their illness for months or years and only seek hospital treatment at the request (or prompt) of their loved ones. Families and patients in relapses and remissions describe the disease as "insidious" and "insidious."

Although Liu describes the disease as "a war on the neurological, psychological and physical fronts," he acknowledges that to this day he struggles to eat enough and that feeling full after a meal can be an emotional trigger.

The common misconception that anorexia is all about restricting food intake ignores the compulsive behaviors that are characteristic of the disease.

Diagnostically, patients are restrictive, meaning they lose weight from excessive dieting or fasting, or lose weight by purging, meaning they induce vomiting or abuse laxatives or diuretics to maintain low body weight. Both types can overwork to burn off what little food they eat.

People with anorexia are commonly described by experts and loved ones as obsessive, successful, perfectionist, highly intelligent, and competitive.

“These personality traits are formed in a society that idolizes thinness, is fat-phobic and obsessed with dieting,” observes Gaudiani. "It's a perfect rush into why patients have anorexia and get very sick."

The descriptions of living with the disease are heartbreaking. on oneQuora Post, Liu described his early teenage years:

"I took a two-hour aerobics class and came home for another two hours while my parents watched TV downstairs. I would get up in the middle of the night to pace the room or stand on tiptoe. I perched on the edge of the seat, determined not to relax and let my fat recline and absorb into my body. Before I knew it, all I was doing with my life was starving myself and exercising."

The father of the young Atlanta anorexic recalls feeling helpless at his daughter's illness. When their daughter hit puberty, the company director and his wife, with the help of therapists and medical staff, made "contracts" to promote nutrition and maintain a reasonable weight.

"We did everything in our power to stop our daughter from going to the bathroom an hour after eating, all the things you should be doing. I turned my back on her and all I remember is seeing her head at the sink," he said.

Read more: Parental Support Can Help Teens Overcome Anorexia »

A place for treatment

Working with a team of therapists, nurses, nutritionists, social workers and psychiatrists, Gaudiani and ACUTE founder Dr. Philip S. Mehler, care of critically ill adult patients whose disease has progressed to the point where life-saving measures are required.

Inclusion criteria require less than 70% of ideal weight or a body mass index (BMI) of less than 15. For a height of 5'7, this equates to approximately 85 pounds.

Although there is debate about itBMI utility, is routinely used in the medical field as a parameter of healthy weight. A BMI of 18.5 or less is considered underweight. The average ACUTE patient, according to Gaudiani, has a BMI of 12.5, i.e. a woman who is 5 feet 4 inches tall and weighs 73 pounds.

Gaudiani and Mehler are the only internal medicine physicians certified as Certified Eating Disorder Specialists in the United States. Like Liu, Gaudiani believes that specialization is key to treating patients with the disease.

"It's not like we have a special laser beam that no other hospital needs to make these patients eat," Gaudani said. “It goes back to the very basics of clinical medicine. They need competent, experienced communicators who understand the medical and emotional side.”

Doctors don't understand that

The treatment of anorexia is generally considered to be the task of psychiatrists and therapists. But with the resulting malnutrition, medical intervention is often unavoidable. This leaves patients in a dangerous limbo, according to Gaudani.

“Patients with really severe anorexia go unnoticed. The doctors are like, 'She's really crazy about me. She is very complicated. He doesn't want to get any better. And people with mental health say, 'She's too fragile medically for me,'" Gaudani said.

Brittle bones, poor temperature regulation, hair loss, heart murmurs, absence of menstruation threaten the health of a severe anorexic: the symptoms are numerous. Severe episodes of hypoglycemia from not eating can lead to unconsciousness and even death.

Another deadly complication of severe anorexia is refeeding syndrome, a problem first discovered after the Holocaust when emaciated concentration camp inmates began eating again, only to die days later from electrolyte imbalances causing their hearts to stop to beat.

When patients are tube fed or IV fluids or begin to increase their caloric intake, detecting these potentially life-threatening changes in fluid and electrolyte levels requires a trained eye. Some doctors wouldn't even think to look at it.

While the starving body can have obvious complications (metabolism slows to conserve calories, resulting in a slow heartbeat and low blood pressure), other clinical indicators can be missed or misinterpreted by professionals unfamiliar with the disease . This can cause significant delays in adequately treating the physical and psychological symptoms of the disease.

"[Doctors] may not know what to do when they look at [a patient's] blood test, so you can get a large number of inappropriate blood tests that are expensive and sometimes invasive," Gaudani said. "One of our former patients was admitted to a nationally renowned teaching hospital and spent six weeks there without gaining weight."

Read more: Facebook is a party for people with eating disorders »

Medical decision-making in an unstable mind

Nutritionists and psychiatrists who treat people with anorexia when they are hospitalized for complications are often unprepared.

Gaudiani says that in most cases, a psychiatric consultation in a hospital will determine that a patient is "fit to make medical decisions" without admitting that the patient has refused to eat, surreptitiously moving about their room, or to clean oneself. Relapses are also common after inpatient treatment in facilities specifically designed to treat anorexia.

“Hospitalization will not heal you until you are ready to be healed. It's a stopgap measure," Liu said. "Especially since most of us who ended up there were forced to be there."

This forced treatment highlights a common legal issue in the treatment of anorexia. Although some people relapse in middle and even old age (a quarter of ACUTE patients are over 40 years old), the disease usually begins in adolescence.

Highly intelligent teenagers with obsessive tendencies don't like being told what to do. But despite anorexia being the deadliest mental illness, hospital treatment is almost always voluntary.

"Unlike drug addiction and some other types of mental illness, we found that you can't involuntarily commit someone," said the Atlanta mother, whose daughter recently turned 18 and now has the legal right to refuse to commit her Parents are involved in your care. She was back in the hospital just three weeks ago but refused to show her test results to her parents or discuss her treatment with her doctors.

“The nurses and nutritionist were very good. My daughter cutting me is not her fault. It is legal for him not to give us access to his health," the young woman's mother said. “But she was very ill mentally and physically. And they knew it.

As with any illness, there are many insurance issues. Inpatient treatment, a longer stay in a facility specializing in eating disorders, must be network-internal and medically necessary. Experts may recommend a 60-day stay, but insurance only covers 10 days.

Some insurers require a patient's BMI to reach a certain low point before hospitalization is considered a medical necessity. Most anorexia advocacy groups offer detailed advice on filing insurance claims with strong recommendations for hiring an attorney.

The road to recovery

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Like many anorexia sufferers, Liu is a self-proclaimed, high-performing Type A personality. She fits Gaudiani's description of most of her patients: highly sensitive, intelligent, and empathetic.

Liu holds severalBlogsjwrite eloquentlyon different topics. This includes their frustrations with bad resumes, dating, and their constant struggles with perfectionism. But when she discusses her recovery from anorexia, she admits a lack of insight, or at least a lack of words.

"I cannot fully explain how my recovery came about. I think for many patients with eating disorders, their game plan is to escape and return to prehospital weight. That was my game plan," Liu said. “But the second time, something in my head rebelled. I was so tired I couldn't stand it anymore. I don't know how that happened. … From then on, I just didn't say anything more. So my only option is to improve."