National Eating Disorders Awareness Week – Expert Resources & Advocacy Guide
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“When gathering information about an eating problem, try using open-ended questions in a non-judgemental way which can help put the patient at ease and encourage them to be open when responding.”
Nikki Pagano, Licensed Clinical Social Worker, BASE Cognitive Behavioral Therapy
Adjusting to the “new normal” of life in a pandemic has been hard for everyone, with new restrictions to our daily routines, physical activities, and social interactions—but certain groups have been uniquely impacted by this crisis.
Researchers from the United States, Sweden, and the Netherlands published a study in the International Journal of Eating Disorders reporting that the impact of Covid-19 may directly affect the core symptoms of eating disorders.
Survey respondents said they have experienced increased fears about being able to find foods consistent with their meal plan, reported increased binge-eating episodes and urges to binge, increased anxiety, and greater concerns about the impact of Covid-19 on their mental health than physical health.
It is well-established that stress is among the prime causes of eating disorders. Individuals with anorexia nervosa (AN) and bulimia nervosa (BN) often have an anxiety disorder that began before the onset of their eating disorder.
The stress of living in a pandemic alone is enough to trigger individuals with eating disorders. But the recent increase in articles and social media posts encouraging individuals to be extra health-conscious, warning of the “quarantine 15,” have also fueled negative thoughts and fears about weight-gain.
With National Eating Disorders Awareness Week (February 22-28, 2021) around the corner, we created a guide to help individuals recognize signs of eating disorders, familiarize themselves with effective treatments, and learn how to approach loved ones that they are concerned may be suffering from an eating disorder.
The Eating Behavior Spectrum
First of all, it’s important to define what it means to have an eating disorder. In the study of eating and weight disorders, there are three main categories to describe the spectrum of eating behaviors: normal eating, disordered eating, and eating disorders.
People who have normal eating habits don’t feel guilt or shame around food or eating. Generally, they eat when they’re hungry, stop eating when they are full, and have no problem eating in social situations, at school, at work, or at friends’ houses.
People who have disordered eating make food choices with the desire to maintain a certain weight or body type in mind. There is usually some guilt or shame around eating and there may be some hesitance to eat in social situations.
Eating disorders occur when an individual makes food choices based on the desire to maintain a certain weight or body type, with a set of rigid rules that dictate what they eat, when, and how much. Feelings of guilt and shame are prevalent among these individuals. There is also a strong reluctance to eat in front of others.
It can be difficult to discern when someone is suffering from disordered eating versus an eating disorder, but usually, with eating disorders, there are multiple observable behaviors that the individual engages in weekly or even daily. Health practitioners will classify an eating disorder based on the quantity of these unhealthy behaviors and a level of obsession with food that is present with the individual. An individual with disordered eating often displays some of the same behaviors as those with eating disorders, but at a lesser frequency or lower level.
The Four Most Common Eating Disorders
Anorexia Nervosa (AN) is an eating disorder and psychiatric illness marked by significantly low body weight, fear of becoming fat, and distorted body image that affects 0.9 percent of females and 0.3 percent of males. Onset typically occurs in mid- to late-adolescence.
Those with AN typically have many rules about eating and peculiar eating habits, such as eating very slowly, cutting food into tiny pieces, chewing and spitting out food, or needing to eat at a certain time and in a certain order.
Unfortunately, AN has among the highest mortality rates of all psychiatric disorders. The cause of death is equally likely to be from suicide as it is from medical complications associated with being underweight. But 50 percent of people with AN achieve full recovery. (One-third of individuals partially recover and remain partially symptomatic, while one-fifth remain ill over the long term.)
Bulimia Nervosa (BN) is an eating disorder that is recognizable by a pattern of binge eating episodes in which an individual eats a large amount of food in one sitting, but may skip meals outside of these episodes. Other behaviors aimed at preventing weight gain may occur, such as self-induced vomiting, fasting, excessive exercise, and the use of laxatives.
BN is slightly more common than AN. About 1.5 percent of adult females and 0.5 percent of adult males have BN, but the rates are predicted to be underestimated. Mortality rates are lower than AN and about 40 to 45 percent of those with BN who seek treatment recover.
Binge Eating Disorder (BED), which is characterized by recurrent episodes of out of control eating followed by distressing feelings of regret afterward, is the most common eating disorder.
It affects 0.9 to 2.8 percent of adults.
During binging episodes, individuals with BED tend to eat faster than usual to the point of physical discomfort in the absence of hunger, usually when they are alone. Outside of episodes, individuals may skip meals and count calories due to a deep concern with body shape and weight.
Mortality rates are lower than for other eating disorders, but there is an increased risk of obesity with BED. Forty to 60 percent of people who seek treatment are able to stop binging. The onset tends to be later than other eating disorders; patients tend to seek treatment when they are middle-aged.
Avoidant Restrictive Food Intake Disorder (ARFID) is an eating disorder characterized by a consistent failure to meet appropriate nutritional needs, without the body shape or weight concerns seen in other eating disorders. Compared to other eating disorders, those with ARFID are more likely to be younger and male.
Having ARFID is not equivalent to being a picky eater. Individuals with this disorder may have a lack of interest in food or fears/anxiety about food, a limited list of foods they will eat, and difficulty eating in social situations, which ultimately lead to nutritional deficiency. Those with ARFID have notably higher rates of anxiety than with other eating disorders, as well as higher rates of OCD and depression.
There are other eating disorders that are not on this list, such as Pica and Rumination, which are less common. In the next section, we will discuss treatment options available for different eating disorders, explained by Nikki Pagano.
Meet the Expert: Nikki Pagano, LCSW
Nikki Pagano is a licensed clinical social worker (LCSW) at BASE Cognitive Behavioral Therapy, a mental health private practice based in Charlotte, North Carolina. Pagano previously worked at the Columbia Center for Eating Disorders at New York State Psychiatric Institute (NYSPI) as the Director of Adolescent Eating Disorder Services. During her time there, she helped co-author preparED, a free, online eating disorders education program for the next generation of clinicians.
Pagano gained her Master of Science in Social Work at Columbia University School of Social Work in New York and her Bachelor of Arts in Economics from Davidson College in North Carolina.
Most Effective Treatments for Eating Disorders
Treatment begins with the individual admitting that they have a problem, which can often be a difficult first step, either because they are unaware that there is a problem, they are afraid or ashamed to seek help, or they simply don’t want to give up their concerning behaviors. Once the individual is finally able to recognize the disorder and is ready to accept help, there are a number of routes that can be taken, depending on their particular disorder.
Levels of care range in intensity from outpatient treatment to inpatient hospitalization. Teams often include a combination of therapists, psychiatrists, dieticians, and medical providers to create a treatment team that can aptly help the individual recover.
“I utilize approaches that have been empirically validated and shown to be the most effective treatments,” Pagano said.
Pagano is certified in Family-Based Treatment, sometimes referred to as FBT or the Maudsley Method, “which places parents in charge of eating and exercise initially and gradually hands back control to the child or adolescent,” she said.
FBT, not to be confused with traditional family therapy, is usually performed in outpatient settings, although there are some residential and partial hospitalization (PHP) programs that use FBT. In this treatment, the eating disorder is viewed as an external force that is affecting the patient. Rather than being blamed for the disorder, parents are empowered to become a part of the healing process.
FBT centers treatment around meal planning and preparation. Parents are encouraged to take charge of nourishing their child with an eating disorder by serving and supervising all meals. If purging is an issue, they supervise after meals and implement strategies to prevent purging, excessive exercise, or other eating disorder behaviors.
“Interpersonal Psychotherapy (IPT) is a therapy that focuses on how our interactions in relationships impact our mood and has shown to be effective for disorders with binge-eating,” Pagano said.
This idea came to be through the work of psychiatrist Harry Stack Sullivan, who believed that an individual’s personality is significantly influenced by his or her interpersonal relationships.
During the first phase, the therapist identifies specific interpersonal problems to focus on throughout the treatment. In the second phase, the therapist encourages the patient to facilitate changes in interpersonal relations. In the third phase, the therapist’s role evolves more toward helping the patient maintain interpersonal gains and preventing relapse.
“Enhanced Cognitive Behavioral Therapy (CBT-E) has the most evidence base for eating disorders,” Nikki Pagano said. “This approach is transdiagnostic, meaning it can be used across diagnoses.”
CBT-E isn’t a one-size-fits-all treatment; it is highly individualized. In the first steps, therapists seek to identify the factors that maintain the eating disorder psychopathology. Most patients tend to be hyper-focused on their weight, body image, and feeling in control. For these individuals, negative self-image and critical self-evaluations become automatic. These patterns need to be broken down and replaced with healthy thoughts.
Sessions may include weighing the patient, reviewing homework assignments, meal monitoring, recording behavioral and weight trends, and identification of barriers and overall treatment progress. CBT-E termination sessions will include a review of the patient’s treatment progress, relapse prevention planning, identification of eating disorder concerns and obstacles to recovery, and support planning after completion of treatment.
Psychopharmacology is also utilized with some eating disorders. While psychotherapy is usually the first choice, antidepressant treatment has been shown to be effective for Bulimia Nervosa and Binge Eating Disorder.
“Other treatment approaches and adaptations using behavioral principles, including Dialectical Behavior Therapy (DBT), which may be useful, but more research is needed to establish efficacy,” Pagano said.
DBT is a comprehensive skills-based therapy that aims to teach patients a broad range of healthier coping strategies, based on the idea that mental health problems are largely caused by an inability to handle our emotions properly. It focuses on four major therapy skills: mindfulness, interpersonal effectiveness, emotion regulation, and distress tolerance.
How long does recovery take? “This is a tough question to answer because it depends on the severity and the duration of the illness,” Pagano said. “It also depends on what level of care is required for the individual. Some eating disorders have a better prognosis than others, but all eating disorders are treatable and full recovery is possible.”
Addressing People With Eating Disorders in Personal Life
If you’re concerned that someone in your life has an eating disorder, you have the opportunity to play a role in helping them seek help, but it’s important to think about how you will go about approaching the individual.
The National Eating Disorders Association (NEDA) recommends researching eating disorders first in order to help you reason with your friend about any inaccurate ideas that may be fueling their disordered eating patterns. Then, it’s a good idea to think about what you want to say so that you are prepared to initiate a private conversation.
Using “I” statements is a good way to avoid sounding accusatory, e.g. “I have noticed that you aren’t going out to lunch with us anymore,” or “I am worried about how often you are going to the gym.”
“When gathering information about an eating problem, try using open-ended questions in a non-judgemental way which can help put the patient at ease and encourage them to be open when responding,” Pagano added.
Avoid antagonizing comments or threats like, “If you don’t get help, we can’t be friends,” or “If you engage in this behavior again, I won’t talk to you anymore.” Even grandiose promises, such as, “I swear I’ll never tell anyone,” should be avoided.
But in your preparation, don’t become overly preoccupied with saying the wrong thing.
“First, people do not cause eating disorders, so don’t be afraid to gather information about an eating problem because you are concerned you might say the ‘wrong’ thing,” Pagano said.
“Second, what feels helpful to an individual with an eating disorder may vary across individuals and even vary for the same individual at different times.”
“Instilling hope is also critically important, especially if an individual has been experiencing these symptoms for much of their life,” Pagano added.
You can offer to help your friend find a doctor or therapist if they don’t have one. Getting timely, effective treatment dramatically increases an individual’s chance for recovery.
“This is a particularly challenging time for those working towards recovery or who have recovered and are trying to avoid a relapse,” Pagano said.
“What can one do if they are trying to recover during a global pandemic? Know this isn’t easy and try to capitalize on what has helped in the past. While support from family and friends is less accessible during this time (especially in-person support), finding ways to continue connecting with support systems is more important than ever.”
Resources for Eating Disorders Awareness
Below is a list of resources that are useful for students, people with eating disorders, and those who are concerned about a loved one with an eating disorder.
- The team at the Columbia Center for Eating Disorders offers a free online education course called preparED. Its six different modules (diagnosis, treatment, assessment, risk factors, medical complications, and obesity) are geared towards students in the medical and psychiatric fields. The course also includes assessment resources and referral tools that can be printed or referenced later.
- For immediate support, you can contact NEDA’s Helpline for resources and treatment options. Helpline volunteers are trained to help you find information and support.
- NEDA now hosts a Covid-19 forum to provide a safe space to discuss concerns about Covid-19 and to get support for your eating disorder.
- You can find a list of family-based treatment certified therapists by state on the Training Institute’s website.