Eating Disorders: What to Know and How to Help
The following experts contributed to our guide:
Eating disorders are widely misunderstood, commonly misdiagnosed, and sometimes callously written off as acts of willful self-destruction, stubbornness, or vanity. Those who have suffered through this disease, however—as well as their loved ones—know that they are all-consuming and often deadly conditions that cause substantial mental anguish and physical harm.
This page was designed to separate myth from reality and to provide information and advice from leading sources, as well as from real people who have both suffered from and treated eating disorders.
Eating disorders are at the forefront of National Eating Disorders Awareness Week, a national advocacy and awareness campaign. The campaign is organized by the National Eating Disorders Association (NEDA), the largest nonprofit dedicated to supporting the millions of Americans who grapple with eating disorders—as well as their loved ones. You can offer your support as well.
National Eating Disorders Awareness Week: February 24 – March 2, 2020
In 2019 NEDAwareness Week, as it’s called informally, launched the “Come as You Are” theme, which was designed to foster inclusivity in the eating disorder community without regard to factors like race, body type, weight, gender, and identity. The campaign encouraged people to simply tell their stories. This year’s theme is a follow-up called “Come as You Are: Hindsight is 2020.” This year, participants will reflect on the positive steps they have taken and once again share their stories with other participants and the nation at large.
You can be involved in a number of ways. Join the Come as You Are movement simply by signing up. When you do, you’ll receive information about how to take action, and you’ll have a chance to tell NEDA your own story. You can collaborate with NEDA on actions like landmark lightings and contacting legislators. You can spread awareness by sharing their graphics, posters, and videos on social media and educate yourself through NEDA’s informative blog posts and Facebook Live panel discussions. You can also attend one of NEDAwareness Week’s many live events or post one of your own. And, of course, you can always make donations to NEDA.
What Is an Eating Disorder?
According to the American Psychiatric Association (APA), “Eating disorders are illnesses in which people experience severe disturbances in their eating behaviors and related thoughts and emotions. People with eating disorders typically become pre-occupied with food and their body weight.”
At least 30 million Americans suffer from eating disorders at any given time. The National Association of Anorexia Nervosa and Associated Disorders (ANAD) reports that these disorders are most common among girls and women ages 12 to 35. However, eating disorders are not exclusive to any gender, age group, identity, race, or ethnicity.
They are potentially very deadly. ANAD states that someone dies as a direct result of an eating disorder every 62 minutes, giving the combined conditions the highest mortality rate of all mental illnesses. Suicide is by far the most significant indirect result of death.
One dynamic that makes eating disorders so challenging is that those who grapple with them are rarely fighting a battle on just one front. According to NEDA, studies show that 97% of people suffering from eating disorders struggle with at least one co-occurring condition. Sometimes the co-occurring condition arrived before the eating disorder, sometimes after, and sometimes at the same time. Mood disorders are the most common, particularly major depression. Others simultaneously struggle with anxiety disorders, which could be a precursor condition—two out of three people with anorexia showed signs of anxiety disorders in the years leading up to their eating disorder diagnoses.
Genetics, personality traits (such as perfectionism and competitiveness), and environmental factors (growing up with an overly-critical authority figure) can all contribute to eating disorders. The confluence of these factors can make it difficult to separate causes from symptoms and tends to link multiple factors that aren’t inherently related to each other. For example, nearly all college students diagnosed with an eating disorder have a gym membership and frequently display a destructive relationship with exercise. Displays of obsessive-compulsive behavior in childhood are common among those diagnosed. And people with eating disorders are also five times more likely to abuse drugs and/or alcohol.
Types of Eating Disorders
The term “eating disorders” includes several types of conditions. The three most common are anorexia nervosa, bulimia nervosa, and binge eating disorder. Less commonly-understood conditions like orthorexia and diabulimia are also considered eating disorders.
Anorexia nervosa is characterized by destructive weight loss brought on by a dramatically reduced caloric intake. A person is typically diagnosed when they weigh at least 15% less than their expected body weight in relation to their height—though this is not the only indicator. Although sufferers won’t eat enough and often appear unhealthily thin, they tend to deny their low body weight and believe that they are too heavy or are at risk of becoming so. They often exacerbate the problem by over-exercising, abusing laxatives, and/or forcing themselves to vomit.
Malnourishment eventually leads to starvation, which includes symptoms like bone-thinning, the ceasing of menstrual periods, dry and yellowish skin, brittle hair and nails, muscle wasting, anemia, lethargy, depression, low blood pressure, slower pulse and breathing, severe constipation, and a reduced body temperature, which makes the sufferer feel cold even in warm or mild climates.
Women and girls are more likely to be anorexic than men and boys, and as many as half suffer from co-occurring disorders. One in five anorexia deaths is by suicide.
Bulimia nervosa is characterized by dramatic, frequent, and unhealthy binge eating, with binges often including excessive amounts of food. The food is frequently high-sugar, high-fat, and high-carbohydrate foods, and it is consumed very quickly. A single binge may include thousands of calories. In many cases, these binges take place several times a week; the most severe cases include multiple daily binges.
Another hallmark of bulimia is the sufferer’s response to their binging—self-induced vomiting and/or laxative abuse. This reaction is usually in response to worries about weight gain or simply the discomfort associated with intense binge eating, which can literally stretch the stomach beyond its normal capacity.
Since the outward signs are not as clear as those of anorexia, people with bulimia can often hide their conditions for longer periods of time. Symptoms include chronically inflamed or sore throat, swollen salivary glands, a puffy face, tooth decay from exposure to stomach acids, gastroesophageal reflux disorder, and severe dehydration.
Binge Eating Disorder
The third most common is binge eating disorder, which is similar to bulimia in that it involves frequent episodes of binge eating. The difference, however, is that this behavior is not followed by fasting or purging through induced vomiting or laxative abuse. Binge eaters are at risk of being morbidly obese and acquiring a variety of ailments, including cardiovascular disease, hypertension, and diabetes.
Sufferers of binge eating disorder often feel depressed, disgusted, guilty, or embarrassed afterward. They also tend to eat alone or otherwise conceal their behavior and crave food when they aren’t physically hungry.
The term “orthorexia” was first used in 1998 and is still not officially recognized in the APA’s Diagnostic and Statistical Manual. It’s not clear what percentage of the population suffers from it, and there isn’t even agreement about whether it’s a standalone disorder like anorexia or a specific type of obsessive-compulsive disorder.
Orthorexia is characterized by a fixation on so-called “healthy eating.” Not to be confused with a preoccupation or heightened sense of vigilance in food quality, orthorexia involves obsessing over ingredients and preparation to a point of being self-destructive. It’s characterized by obsessively checking ingredient lists, limiting food options to a tiny group of choices deemed “pure” or “healthy” by the sufferer, and the cutting out of entire food groups. Body image issues may or may not be present.
Diabulimia refers to a condition associated with people suffering from diabetes—usually type 1 —who purposely restrict insulin in order to lose weight. Diabulimia is a media-coined term that some medical professionals refer to as “eating disorder-diabetes Mellitus type 1” (ED-DMT1), which can be an overarching term used to describe any eating disorder existing simultaneously with type 1 diabetes.
The condition can emerge at any age and at any time after an initial diabetes diagnosis. Treatment is often more challenging and less successful than with other eating disorders because both the disorder and diabetes must be addressed at the same time.
Symptoms include a fear that insulin is making them heavy, secrecy about and neglect of diabetes management, the willful missing of diabetes appointments, extreme body image anxiety, excessive exercise, and secluded eating. There are diabetes-specific symptoms, too, including A1C readings consistently above 9.0 and multiple DKA episodes.
If you suspect a loved one has an eating disorder, watch for one or more of the following:
- Preoccupation with body type or weight: Sufferers often obsess over their weight or the perception of being overweight.
- Fixation on food intake: It’s common for those with eating disorders to obsess over how much and how frequently they’re eating and with the calories associated with even trivial amounts of food.
- Issues with self-image: Many sufferers believe they are overweight when they are at or even dramatically under their expected weight for their height, gender, and build.
- Drastic changes in weight: Depending on the disorder, sufferers often quickly put on or take off a dramatic and unhealthy amount of body weight.
- Lethargy and depression: Sufferers commonly lose interest in things that once excited them, are frequently fatigued, don’t have the energy to do things they formerly did, and/or are inactive and sedentary.
- A steep decline in oral health: Eating disorders can cause dramatic tooth decay, gum disease, and other oral health problems.
- Swollen glands and puffy cheeks: Problems with the salivary glands are common symptoms of eating disorders.
NEDA also offers an online screening tool that asks additional questions to help determine if professional help is needed.
Treating Eating Disorders
Treating eating disorders is one of the toughest challenges in the field of mental health. There is no pill you can take, sufferers are sometimes resistant to therapy, and relapse is common.
Behavior support specialist Sabrina Sturdivant also points out that the disorders present at different levels. “One of the biggest challenges in working with individuals with eating disorders is identifying the level of care needed by the client/patient,” she says. “Eating disorders, such as anorexia and bulimia, are serious diseases that sometimes require hospitalization. Typically, when we think of therapy, we imagine around one hour per week in a therapist’s office. However, clients may require inpatient or intensive outpatient care. As a clinician, it can certainly be difficult to make a decision on someone’s well-being and potentially their survival.”
Typically, when we think of therapy, we imagine around one hour per week in a therapist’s office. However, clients may require inpatient or intensive outpatient care. As a clinician, it can certainly be difficult to make a decision on someone’s well-being and potentially their survival.
For those who are not critically ill, however, specialized training and compassionate care can lead to success stories, like the kind Dr. Julie Morison regularly oversees.
“Because eating disorders develop for varied reasons and because symptoms are maintained for varied reasons, it is important to individualize each person’s treatment plan,” Morison said. “That said, most treatment plans for all eating disorder symptoms include interventions that promote behavioral change.”
Although Dr. Morison stresses that each case is unique, some overarching treatment plans can be applied to most eating disorders.
“Cognitive behavior therapy with a special focus on exposure has shown to be a very effective way of treating many eating disorder-related symptoms,” she says. “Of course, each person’s story and the etiology of their disorders vary, so individualized treatment is always important.”
Sturdivant goes further, noting that treatment might be somewhat different for adults and youth.
“For adults with eating disorders, Enhanced Cognitive Behavioral Therapy (CBT-E) has been suggested to be the most effective treatment for anorexia, bulimia, and binge eating disorder,” she says. “CBT-E was created specifically for eating disorders and is very structured yet highly individualized.”
However, Sturdivant points out that research has suggested Family-Based Therapy (FBT) might be the best form of treatment for youth with bulimia and anorexia. “FBT views the eating disorder as an external force that is negatively impacting the child or adolescent. Parents are heavily involved in this form of therapy in order to join forces with the child to defeat the eating disorder.”
How You Can Help Someone With an Eating Disorder
As a registered dietician nutritionist who works with people struggling with eating disorders, Dylan Murphy knows how crucial support from friends and family is to recovery.
“Eating disorder recovery is usually not a straight and narrow journey,” she says. “It’s very common to have periods of time where you relapse or feel like quitting. In those times, your outside support system is vital. It’s a hard and tiring road, so having loved ones who can support and encourage you in the journey can make a huge impact.”
Many people believe that the person who is struggling … should be the only one to make changes in their lives. That is certainly not the case with eating disorders.
If you’re worried about a loved one, follow this checklist, which we developed through information from NEDA and Murphy’s own insights:
Sabrina Sturdivant also stresses that you may need to be an active part of treatment. She notes that “Many people believe that the person who is struggling … should be the only one to make changes in their lives,” she says. “That is certainly not the case with eating disorders.”
Few people understand the signs of an eating disorder better than writer Catherine Brown, who survived anorexia. She discusses some of the signs based on her own experience.
- Diet and exercise become an obsession: “My fall into anorexia started with what I thought was a healthy desire to lose a few pounds and become more fit. Losing weight by incorporating healthier foods and adding workouts felt like a positive way to feel better about myself. The obsession got intense quickly. Within weeks, all my thoughts focused on finding little ways to further restrict or add even more calorie-burning activities.”
- Denial and self-justification: “Though a part of me deep down knew I was developing an unhealthy obsession with weight loss, I found ways of justifying my addictive behavior to myself and those around me. I hid any signs that my newfound interest in ‘becoming healthy’ could be negative in any way.”
- Social isolation and private obsession: “As the eating disorder strengthened, it overtook me. I isolated further and further from my friends and family to give full attention to this addiction to lose weight. I spent almost all of my energy thinking about calories.”
- Lying: “I told lies much more easily than ever before. ‘I’ve already eaten.’ ‘I’m planning to eat later.’ ‘If I eat that, I’ll get a stomachache.'”
- Mood and psychological changes: “Restricting food intake can cause psychological changes to occur, including depression, anxiety, body dysmorphia, and self-harm. These changes can contribute to the development of an eating disorder.”
Where to Get Help
The following helplines are a great place to start if you’re looking for compassionate, informed advice and counsel. They’re open not only to those who are suffering but also to their loved ones.
The National Eating Disorders Association (NEDA), organizer of National Eating Disorders Awareness Week, is the largest nonprofit organization dedicated to supporting individuals and families affected by eating disorders. The NEDA website provides tools for those seeking help (screening tool and self-awareness information, map of treatment centers across the U.S., links to free and low-cost support), comprehensive educational materials, advice for ways to get involved, a blog, and more.
Below are other associations dedicated to eating disorders.
Meet the Experts
Dr. Julie Morison, Ph.D., is the owner of HPA/LiveWell in Albany, New York, the only eating disorder intensive treatment program in the Capital District.
Sabrina Sturdivant, M.A., is a behavior support specialist who treats patients with eating disorders, among others. She is currently getting her doctorate at Spalding University.
Dylan Murphy is a registered dietitian nutritionist and owner of Dylan Murphy Nutrition, a nutrition coaching practice based in Nashville, Tennessee.