There’s an eating disorder that often gets overlooked amongst the better-known eating disorders like Anorexia Nervosa, Bulimia Nervosa, and Binge Eating Disorder. Avoidant Restrictive Food Intake Disorder (ARFID) is an eating disorder that can involve difficulty tolerating certain foods due to textures, tastes, or smells. It can also manifest as avoidant behaviors stemming from a trauma around food such as choking or getting sick from eating a particular food. Some people worry about whether they are going to be able to swallow food or they have an aversion to throwing up. ARFID can present as a lack of interest in food altogether.
This eating disorder can result in very limited food selections which in turn can lead to medical complications such as low weight, failure to gain weight during childhood, developmental delays, malnutrition, and vitamin and mineral deficiencies. Many people who struggle with this disorder share how uncomfortable it is to eat out socially and feel isolated from peers and family. It can be a very frustrating disorder for the individual who has it and certainly can be difficult for the caregiver or loved ones supporting a person struggling with ARFID. Many people who have ARFID do want to eat. Unlike people with anorexia nervosa and bulimia nervosa, people with ARFID usually do not have fears of weight gain or their body changing.
It can be hard to sit across the table from someone you love and see them unable to feed themselves even when they are hungry. It can be hard to understand and relate to a person with ARFID’s lack of interest in eating or fears that arise around certain foods. Many times caregivers find themselves accommodating meal times by cooking specifically for their person with ARFID or having to plan out exactly what foods will be available to eat when away from the home.
How do you support the person you love as they are trying to recover from this eating disorder?
First off, validation. The recovery process can be really hard. For many people with ARFID doing food exposures is an important element of treatment. This means they are trying foods that they have been terrified of eating or practicing eating to prove their fears are not coming to fruition. It is a scary process to face these fears. They may feel anxious and overwhelmed. Let them know that what they are feeling is real. Validate their feelings. Acknowledge how tough this must be for them, and share that you believe they can do it.
Second, have patience. ARFID is often seen in children but can last well into adulthood. Many of my own clients have been restrictive eaters since they were babies and toddlers. For years families have found ways to feed them and that often involved negotiating with what they would eat and sticking to these safe foods. You may have found yourself making separate meals for your family member and not going to certain restaurants because you knew there were no food options for them to eat. As your loved one begins to do exposure work with foods it will take time for them to become more comfortable. You may want to say, “Just eat” or get frustrated by their continued refusal. Remember that expanding their food variety is a slow process. Pressure and anger are not helpful. In fact, they may be shaming. Encourage your loved one to practice trying new foods every day. Remind them the more they practice the easier this will become.
The third thing that is helpful is allowing them to have agency when it comes to their food choices. People are more likely to try foods that they are interested in versus feeling compelled to eat a food when they do not want to or are not willing to try it. The process can feel less intimidating. As a parent, you may find yourself in less of a power struggle with your child if in the past they have held up strong resistance to tasting new foods.
Fourth is education and support. It can be very powerful to learn about ARFID and its symptoms. It may also be helpful to reach out to other caregivers who have gone through this process. Many parents feel helpless when their child refuses to eat. Having support from a therapist, support group, and medical providers can feel empowering and also help relieve some of the burdens you may be placing on yourself.
If you or someone you know is struggling to eat due to aversions or fears there is help available. Checking in with your medical professional first can be a good place to find out if your loved one is under-weight, has deficiencies from lack of nutrition, or is experiencing any other health complications. At Eating Disorder Therapy LA, I and other therapists have been trained in helping ARFID patients recover. There is hope–and recovery from this diagnosis is very possible.
Grief can be complicated and a painful process. This holiday season many of us are experiencing the loss of the past year we were supposed to have. For those who have lost someone special this can compound the difficulty of this years’ holiday season. 2020 has not been easy for many of us and finding joy during the holiday season may feel challenging.
Many years ago when I was first starting out as a therapist I was seeing a client for grief counseling. This client shared with me something I had never heard about. They discussed that when you find a dime it is a sign the person you’ve lost is reaching out to you. It is a sign they are with you. This client told me how they had been finding dimes all over the place. That evening, after having met with that client as I was packing up to go home, I looked down by my chair and noticed a dime.
This concept was not lost on me years later after my own mother died. I would find dimes all the time and kept each one that I found. In a grief support group that I was in many of the group members shared about the signs they received from their loved ones. Some talked about coins they found, some said it was a certain type of bird they’d see, and for others a certain song that came on the radio. What I learned was that it did not really matter what the thing was but how that thing we found kept us connected to the person we love. It brought comfort. It brought peace. It brought healing.
It is okay if you are not spiritual or religious. A sign doesn’t have to signify anything more than a memory or a feeling of connection to that person. Right before Thanksgiving this year my brother sent me a picture of a sweater he saw at a yard sale. It was adorned with carousel horses. My mother was obsessed with and collected all types of carousel horses. In that instant I had goosebumps. “She’s with you,” I said. And he agreed. “I feel it,” he said. “It is nice to think she is here with me.”
Coincidentally, my mom also collected dimes that she found as she believed they were messages from relatives and friends she had lost in her life. I didn’t know this until my dad told me after I shared with him about my new coin collection. Knowing this was something my mom also did made finding a shiny dime even more special. It really makes me feel like she is with me.
Losing someone you love can be difficult. Finding ways to stay connected through a sign is one way to ease the pain and bring comfort to your aching heart. During this holiday season, if you are struggling with the loss of a loved one think about something that connects you to them. Is there a holiday tradition you use to do together or a song you both sang? Maybe there was a food that was enjoyed together that you could make now. Whatever it may be, know that this could potentially help with healing from the loss you feel during this holiday time or during any time of the year.
If you have an eating disorder, or your child has one, there is a good chance that weight gain will be an essential part of the recovery process. This is true not just for people in objectively small bodies, but also for people in larger bodies who are diagnosed with Atypical Anorexia, a weight-biased diagnostic category included in the DSM-5. It is even true for people recovering from bulimia nervosa and binge eating disorder.
The eating disorders field lacks consensus on how to set recovery weights. I know a respected professional who argues adolescents should be routinely restored only up to the 25th percentile weight for age. They argue that this reduces their potential for experiencing weight stigma and reduces their anxiety. However, I see a problem with this, as do many of my colleagues and many families and recovered people.
This article discusses why weight recovery is a priority; what the research on weight suppression says; how we use growth curves in setting recovery weights; what evidence suggests that many providers set recovery weights too low; and how this applies to people in larger bodies.
Why Prioritize Weight Recovery
We know that while weight recovery in anorexia is not sufficient for recovery in and of itself, it appears to be a prerequisite for full psychological recovery. Eating disorder cognitions as well as most of the physical symptoms appear to recede only with full weight restoration. Food is medicine not just for the body, but for the brain as well. That is why we often say, “Food is medicine.”
The research on timelines for eating disorder recovery show that remission of eating disorder behaviors such as binge eating and purging takes an average of eight or nine months, and weight recovery takes on average 12 months. But it takes even longer to end eating disorder thoughts, including the preoccupation with shape and weight and urges to restrict, purge, or exercise. These thoughts can persist for nearly a year after a person has reached a normal weight, has stopped engaging in behaviors, or both.
Weight Suppression and Negative Energy Balance
We also know that weight suppression—defined in adults as the difference between a person’s current weight and their previous higher adult weight—predicts continuation of eating disorder symptoms including binge eating. In children and adolescents, weight suppression would be defined as a negative deviation from one’s expected weight curve (more on growth curves below). Therefore, at EDTLA we prioritize full weight restoration for all patients in all body sizes and with all eating disorders. Failing to fully restore a person to their recovery weight for body and brain could prevent them from a full recovery.
A negative energy balance—taking in less energy than one’s body needs—may be a primary contributor to the development of an eating disorder in someone who has the innate susceptibility. Cindy Bulik, Ph.D. describes how a negative energy balance lowers anxiety for a person with this vulnerability, creating a trap. Restriction becomes seductive under these conditions. Couple this with the evidence that the weight loss leading to the development of anorexia nervosa could be unintentional—such as a side effect of an illness or an overexpenditure of energy for sports combined with undereating. Together these suggest the best defense against relapse is maintaining an adequate energy balance and a healthy weight where the brain is functioning well enough to not act on residual thoughts.
Using Growth Curves to Estimate Recovery Weights
In this section, I will discuss why using individual growth records is so important. We have received guidance from our colleagues specializing in adolescent medicine and eating disorders. Like many eating disorder dietitians, one of the things we do is look at childhood growth records when they are available. This method is more tailored than using population averages such as BMI to set recovery goals.
In the US, most pediatricians and family medicine doctors document children’s growth on the CDC growth chart, which plots height, weight, and body mass index (BMI) against age-based averages. In healthy children and teens, height and weight each increase along a consistent growth curve. Some children and teens grow steadily along the 95th percentile, some along the 75th percentile, some along the 50th percentile, and still others along the 25thh percentile.
But not every body is the same, and it’s normal for individuals’ height and weight to follow different growth curves. For some children and teens, a weight along the 75th percentile and height on the 25th percentile is normal. This defines the growth curves for that individual. Just as not every woman of average height wears a size 8 shoe, not everyone of average height is meant to be at the 50th percentile for weight. There is always a normal distribution in a population. These growth percentages appear to be largely genetically determined.
A deviation on an individual’s growth curve for weight, height, or BMI—even in the absence of actual weight loss—may indicate there is a problem such as an eating disorder. A child should be growing and gaining weight during this time, so the failure of a child or teen to gain the appropriate weight can be equivalent to weight loss. This means that when there is actual weight loss, the amount of suppression—the difference between current weight and where one should be on a growth trajectory—is usually even greater than the actual pounds lost.
Thus, a parent may come to us and say, “My child has only lost 10 pounds.” However, when that weight is plotted and we notice that the child also failed to gain any weight in the months before they lost weight, we might now look at their curve and see that in fact, the child should gain 20 pounds (or more!) to catch up to where they should be on their own unique growth curve. Some kids may not have lost any weight at all—but have fallen short of their appropriate gain for so long that they now should gain at least 10 pounds.
This is why we also often say that weight is a moving target. To remain in recovery, a year from now an individual’s goal weight must be higher than the weight that would be healthy at their age today. And this is true even for children who are no longer getting taller, as it is normal for weight to continue to be gained through about age 20.
Please be aware that some non-ED specialist pediatricians/health professionals may not be well-informed about this individualized process of setting goal weights. I once had a pediatrician who told a teen’s parents she would be happy if my patient got to a certain weight because that was the weight that the pediatrician—who was herself quite petite—had weighed at the patient’s age.
What? A pediatrician setting a goal weight for a patient based on her own unique growth history!?? When you take your clothes in for alterations, does the tailor cut the clothes to fit the tailor? Do you see the problem here?
Speaking of growth curves, the use of growth curves to spot early eating disorders is an underutilized practice. In a recent study on pediatric patients hospitalized with an eating disorder, 48% of patients experienced a deviation in the growth curve a median of almost 10 months prior to the first eating disorder symptoms being reported by parents.
We will also show you how your teen’s weight should be tracking on the weight curve. Teens generally gain 30 to 40 pounds in the course of puberty. While many children gain weight and grow naturally during this period, we find that children who have had an eating disorder may need continuing guidance to help their weight keep pace with their age and height. We encourage parents to keep an eye on their teen’s weight to make sure weight continues to track along the expected curve. We respect parents and educate them on this.
At EDTLA, we do our best to challenge our own weight biases and that of our patients and their families. We believe that facing the anxiety of a patient or a child restoring to a slightly higher weight has benefits that outweigh the costs. We help the family challenge the belief that being fat is worse than remaining ill. I never want to be the provider who set a goal weight so low that it contributed to prolonging a mental illness from which it may take a patient 9 to 22 years to recover.
Challenging weight bias and setting higher weights goals does not always make us popular. Teens with eating disorders are by definition, terrified of gaining weight. In her blog, eating disorder specialist pediatrician Julie O’Toole discusses the setting of goal weights and how parents fear that too much weight gain will make their teen more depressed and anxious. Dr. O’Toole emphasizes the importance of basing treatment goals on data rather than placating the eating disorder.
Remember that an irrational fear of weight gain is often a symptom of the disorder. The anxiety over one’s body size often improves significantly with recovery, which requires more regular eating patterns and—ironically—weight gain. Please note this is rarely immediate. It may take up to a year of being at one’s healthy weight and learning to tolerate a changed body before the eating disorder thoughts fully subside. On the other hand, appeasing the fear of gaining more weight can maintain the fear and potentially the disorder.
How Does This Apply to People in Bigger Bodies?
We are often asked why a person who has historically been at a higher-than-average body weight must be returned to a weight that is higher than average. We recognize that bodies naturally come in a variety of shapes and sizes. Some people are meant to be larger. We often encounter patients and families who say “but they looked better when they were a few pounds less” and want to use the eating disorder as an opportunity to keep a person’s weight suppressed. We believe that using an eating disorder as an opportunity to avoid returning to a previous higher weight could hinder the individual from reaching full recovery. And the research on weight suppression supports this. In the words of Julie O’Toole, “Rarely can a child who is genetically programmed to be larger than average be safely held at a ‘thin’ body weight. Size acceptance may be a part of the family’s treatment challenge.”
Of Course, Recovery is About More Than Weight
Remember, though, that an estimated recovery weight is just that—the best estimate of where recovery will occur. I think it is important for parents to have a roadmap and to know generally whether they might be needing to add (at least) 10 pounds or 20 pounds or 40 pounds because it gives you a realistic expectation of how long the weight recovery phase may take. Again, this may change over time and our estimates are usually a minimum weight and bodies may go higher.
Ultimately, recovery is about state, not weight. And recovery means more than just weight recovery. We are looking for recovery of physical health—normalization of heart rate, blood pressure, and body temperature and resumption of menses when appropriate—as well as psychological recovery which includes improved mood, decreased eating disorder thoughts, return of normal hunger cues, and more regular eating, a less fraught relationship with food, improved social functioning, and a return of interest in other age-appropriate activities.
In one informal survey of 29 parents whose teens were given a recovery goal of 19 BMI, most reported recovery actually occurred at a BMI of 23 or greater and none achieved recovery at a BMI lower than 21. Parents will report that often, with an additional ten extra pounds, their teens were more likely to attain state recovery. If someone is not doing well at what we initially estimated to be a recovery weight, we will review that and may suggest after a few months that we raise the goal weight a little.
This post has described our thinking, which is informed by research, parent feedback, and expert opinions by leaders in the intersection of adolescent eating disorders, FBT, and Health at Every Size ®. We hope it helps you understand our recommendations.
But you don’t have to take our word for it. We invite you to do your own research. Below we’ve compiled some resources from leaders and colleagues in the field. And we strongly suggest you watch this video by Eva Musby.
Recovery is challenging! I am repeatedly moved and impressed by the courage of my patients as they work through recovery from an eating disorder. One strategy that can help support recovery is a careful structuring of one’s recovery environment. This applies to adults working individually in treatment as well as to families helping adolescents to recover.
Most evidence-based treatments including cognitive-behavioral therapy (CBT) suggest that patients consider the timing of the start of treatment and potentially postpone it if they anticipate major distractions that will impede recovery. Similarly, it can be helpful when possible to try to minimize challenges.
Recovery looks different for everyone. Some patients are ambivalent about treatment and the changes it will require. Others are eager to be recovered from their eating disorder and just want to get on with life. And many may feel the urge to rush recovery. But I encourage you to “take it slow.”
As a behaviorist, I like to think of recovery as a set of skills that are learned, developed, and practiced in increasingly challenging environments. Whether you are transitioning to an outpatient level of care or beginning treatment as an outpatient or supporting a teen in recovery at home, those first few months should be treated like “Recovery 101.” This is a training phase in which you are first learning and trying out recovery skills. Your abilities will become more fine-tuned as you practice increasingly difficult skills.
In this phase, it is best to be in a highly structured environment without too many complexities. Most people do best with structure. This is why settings housing large numbers of people tend to be highly structured. (I know – I worked in LA County Jail for 10 years.) This is also why higher levels of care with the sickest patients are highly structured. Structure makes things predictable and reduces anxiety.
In a structured setting, it is easier to follow a routine, such as eating at a regular time, having a familiar meal, and facing fewer distractions. Chaotic and unstructured environments are unpredictable, are more challenging for recovery, and require more advanced and flexible recovery skills.
The Challenge of Environment
In Recovery 101, it is often easiest to start by keeping things simple and predictable. Each element that adds complexity or uncertainty to the environment presents an additional challenge to someone with an eating disorder. Novel situations, different foods, different food venues, and different companions can all bring anxiety to those in early recovery. Any deviation from a routine requires additional skills, so handling each of these should be viewed as a new skill to master.
We can think about this as a ladder with each rung adding new difficulty. At the bottom is generally eating meals at home with support from immediate family. The next rungs might include:
Having friends or relatives over for dinner
Eating at a close friend’s house
Eating at a restaurant where individual entrees are served
Eating at a family-style restaurant
Eating at a buffet.
Each higher rung on the ladder requires more decisions and thus more skill. Each skill must be practiced.
Take it Slow
Many patients are tempted to climb the ladder quickly, rushing towards the more complicated and challenging situations. This is not advisable when someone is in Recovery 101. Some challenges are better left until recovery skills are stronger, if at all possible. It is easiest to learn skills first in one place and then to practice them in different settings. It is in this way that skills will generalize.
More advanced challenges that may best wait until the basic skills are mastered will vary from individual to individual, but these can include situations such as:
Weekend schedules when you have slept late (do you count brunch as breakfast or lunch and how do you handle the rest of the meals when your first meal is 3 hours late?)
Cooking for oneself
Going to unfamiliar restaurants
Eating at a small-plates, buffet, or family-style restaurant
Foreign travel to countries where the foods may be entirely unfamiliar
Instead of taking on advanced challenges all at once, consider potential ways to structure the environment during early eating disorder recovery:
Having meals planned out for the entire week
Eating meals at regular times
Regular grocery shopping
Having a backup plan (in case you run late or a plan changes)
Always carrying snacks (and backup snacks)
Planning alternative activities for high-risk times (for many patients that is evenings spent at home. For one patient, that meant going out on evenings her husband would not be home for dinner.)
Limiting meals at unfamiliar restaurants
Only bringing into the home small quantities of foods on which you have binged
Having a support person you can call
Structured schedules for every day of the week, including weekends
Careful planning ahead (with your team if you have one) for any situation you have not yet practiced
Keep in mind that you may experience setbacks. Sometimes you have to go back down the ladder before going back up again. This is a normal part of recovery.
When recovery is further along, you will be better able to handle more complex and challenging situations. Flexibility will come, but for now, keep it simple.
As I’ve talked about in depth here, the transition to college away from home is challenging for most young adults. It is especially fraught for young adults with eating disorders. In that article I provided a College Readiness Checklist for students who are either considering their first move away from home after a history of an eating disorder or returning to college after being diagnosed with an eating disorder. I have learned the hard way. I’ve witnessed the heartbreaking reality of what can happen to students who go away before they’re ready. I may seem stringent, but we’re talking about one of the most deadly mental illnesses and this is your child’s life and future.
I was recently asked whether the same standards should apply in the current climate. I replied that I thought the standards should actually be more stringent given the pandemic. This has been on my mind all summer; now, I am prepared to sound the alarm.
Students with eating disorders of all types—anorexia nervosa, bulimia nervosa, binge eating disorder, and avoidant restrictive food intake disorder (ARFID)—often have a narrow range of foods they are comfortable eating. They often struggle with flexibility.
The pandemic has thrown a wrench—really, a whole toolbox—into the college experience. Among the changes this fall is that most dining halls have pivoted to prepackaged meals. This will be an added challenge for students with eating disorders. Students have already reported that the results are long lines as they wait for food, far fewer food choices, no option to portion their meals themselves, and no option to mix and match. These prepackaged meals may be insufficient in nutrients or energy, especially for students in recovery who have high energy needs.
Add to this the experience of students who are quarantining either due to outbreak or exposure, or as required by the college upon return to campus as a preventative measure. Most are in dorm rooms without access to a kitchen. Social media has exploded with unfortunate food stories:
Meals comprising things students cannot eat—a vegan student who gets a steak and cheese salad; a student allergic to gluten who gets a sandwich on wheat bread
Meals never received, received several hours late, or 3 daily meals batched into one delivery at the end of the day.
These stories are garnering attention, people find it laughable, and the colleges are receiving criticism, but I can only think about how the students with eating disorders are impacted.
Eating disorder recovery requires eating at regular intervals and meals sufficient to maintain recovery. Even a small negative energy balance can increase the risk for relapse in individuals with anorexia nervosa or increase the risk of binge eating for those with bulimia nervosa or binge eating disorder.
Students who are not very stable in their recovery may not be able to handle the current climate. They may not be able to seek additional food if portions are too small. People early in recovery often experience shame about hunger. It could be very triggering to receive portions that are not satisfying. Patients with eating disorders may not be able to advocate for their nutritional needs or do the problem-solving required to make sure the meals are sufficient. Finally, receiving an entire day’s worth of meals at the end of the day would be a natural trigger for those who have struggled with binge eating—or for most people!
Add to this the stress of academics and social issues and the uncertainty about the rest of the semester, and you have a perfect storm for relapse.
If you have any doubts about whether your student may be ready for college under these challenging circumstances, I strongly encourage you to consider keeping them home this semester. If there ever was a time to err on the side of caution, it is now.
With most classes online and social options at college significantly limited, this provides a unique opportunity to keep them home so they have more recovery time under their belt before they have to face such eating challenges. They will not be missing much, and you can work on strengthening recovery so that when the pandemic is over they can return as a healthier student capable of embracing the full college experience. You can use my article—which outlines steps to prepare a student for the challenges of navigating recovery in college— to make sure they are fully prepared when the time is right.
With the global COVID-19 pandemic shutting down not only towns and states but entire countries, our world has entered into an abnormal time. The lives of everyone have been interrupted and disrupted by a virus that can have devastating effects. During this time many people are reporting feeling levels of heightened anxiety and for those already struggling with anxious thoughts, this can be a paralyzing time.
It is natural to feel anxious during a worldwide pandemic. There is something scary out there and there are a lot of questions about what will happen, what the future will be like once we can return back to normal, and whether we can even return back to our old normal.
These thoughts and feelings remind me of when I lived in New York during the September 11th terrorist attacks. While an attack is far different than a virus, there are similarities in the feelings that arise. I, and many others living during that, questioned whether I was safe, whether this would happen again when it might happen again, and what would happen next. In the months and years to follow our style of living differed slightly. Most apparent was how the structure of airports and entering airports changed. Never again would you come off the plane to see family and friends waiting at the gate. And there were other changes that we all just adapted to which became our new norm. Life became known as living in “Post 9/11.”
I can only assume that we will one day live in a world “Post COVID-19” and move past this pandemic. But It leaves us all with numerous questions including: “Can I get sick? What will happen in the future?” Anxiety loves to live in the “what-ifs” and can cause increased fears and panic. So during this time, a time of uncertainty when many of us feel a lack of control, it is best to look at strategies to manage anxious feelings.
Limit triggering information. The news can be very triggering so try to limit your news consumption. Just as it was in 2001, the news is 24 hours a day and 7 days a week. However, now, it can be accessed not just by our computers, radio or television, but right on our phones. Too much information can be overwhelming. Try to limit your media intake to an hour a day and look at getting your information from legitimate sources. In this case, follow a single trustworthy news source or the Centers for Disease Control and Prevention (CD) or the World Health Organization (WHO). Pay attention to your local officials who are setting guidelines in the towns/cities that you live in.
Reach out for support. While right now we are practicing social distancing, you can still connect to people through phone calls, video calls, online game streaming services, and other social media outlets. Many therapists, dietitians, and medical professionals are offering video sessions. Many support groups have moved online as well. Support can be a click away. You do not have to sit with your thoughts all by yourself.
Practice grounding techniques. If you feel yourself having an anxiety attack try to focus on one sense (i.e sounds) and pay attention to what you hear around you. Or close your eyes and imagine a place that feels safe. Describe back to yourself this safe place and what you see, smell, hear, and feel.
Take deep breaths. Anxiety and panic can increase heart rates. Slowing down your breathing can help decrease the on-edge feelings. There are many great Apps and online videos that offer free-breathing techniques and meditations.
Focus on the present. Focus on what you are able to do right now. We do not know when things may start up again but think about the things you’d like to be ready for. A great example is if your school is paused right now, but you have access to many educational resources, that learning doesn’t need to end.
Lastly, engage in hobbies and activities that you enjoy. Allow yourself to have fun even during these trying times. Anxiety can steal our fun and relaxation so make sure you continue to do things that make you feel good.
It is okay to feel your feelings and it is okay to have anxious thoughts. The above list is a useful tool if you are finding yourself stuck in your anxiousness. While it is an unprecedented time, you can work on managing your reactions to your feelings and thoughts through these coping techniques. If you or someone you know is struggling, the clinicians at Eating Disorder Therapy LA are here to help. We are offering teletherapy sessions for those in California or New York state. For more information or to set up an appointment reach us at 323-743-1122 or e-mail Hello@eatingdisordertherapyla.com.
As of March 2020, the advent of the COVID-19 pandemic is bringing dramatic changes to all aspects of our lives.
One of the most significant impacts of social distancing is a change in the mode of delivery of psychological treatment. It appears that most outpatient therapists, dietitians, and medical doctors are moving entirely to telehealth sessions (over the computer). Even many intensive outpatient (IOP) and partial hospitalization (PHP) programs appear to be shifting to a telehealth delivery model. Further, it appears that admissions to residential treatment centers may be reduced and limited to only the most severely medically compromised patients.
As a result of more stringent admission standards as well as travel restrictions and the transition to online sessions, it appears that a larger number of eating disorder patients will be in the home. Fortunately, Family-Based Treatment (FBT) is a treatment naturally poised to fill the gap created by the Coronavirus.
FBT has emerged as a leading therapy with empirical support for the treatment of adolescents with anorexia nervosa who are medically stable. It also shows support for adolescents with bulimia nervosa and young adults with anorexia nervosa. FBT makes the role of parents central to challenging their adolescent’s eating disorder. The hallmark of the treatment is family meals which parents plan, prepare, serve, and supervise. If purging is an issue, they supervise after meals. They implement strategies to prevent purging, excessive exercise, and other eating disorder behaviors. I have often said that FBT is like providing residential treatment in your house for only your child.
FBT is a manualized treatment and usually takes place in approximately 20 weekly sessions with an FBT therapist over a period of about 6 months. A teen should also be monitored by a medical doctor and a dietitian may be involved in helping the parents with meal planning. Fortunately, FBT sessions can be delivered via telehealth.
Telehealth is the delivery of medical or mental health treatment over live video. There are numerous HIPAA-compliant platforms that treatment professionals use such as Doxy, Zoom, and Vsee. Aside from a reliable internet connection and a private setting, there are no additional requirements for telehealth delivered mental health care. Telehealth interventions have been used in various forms since 1972. In general, the research shows that therapy delivered via telehealth can be effective for a variety of problems. Telehealth has been successfully applied to both family therapy and the treatment of eating disorders.
Kristen Anderson, LCSW and colleagues did a study of FBT for adolescent anorexia utilizing telehealth. They utilized the same treatment manual utilized in outpatient studies of FBT with minor variations. For example, instead of weighing the patient in the therapist’s office prior to appointments, the parents weighed the patient at home prior to the session and shared the weight with the therapist. The structure of the sessions was the same, with all family members in attendance. The therapist initiated therapy sessions by video conference and met individually with the patient for a few minutes first, followed by a meeting with the entire family for the remainder of the therapy hour.
Anderson and colleagues found that it was feasible to deliver FBT via telehealth. There were no dropouts over the course of the study and the average number of treatment sessions attended was 18.4. Parents found the treatment to be extremely helpful and participant weight increased significantly. Meaningful improvements were also noted in eating disorder symptoms as well as depression and self-esteem. Anderson and colleagues concluded, “these findings suggest that this method of delivering FBT may be effective for meeting the treatment demands of adolescents living in areas of the country where there are inadequate treatment resources such as nonurban or rural settings.”
Little did they know that throughout the world, social distancing would create a need for FBT delivered by telehealth!
If you are looking for virtual FBT support during this time, we can support families throughout the states of California, New York, and Florida in the US, and we can also provide support for families in some other countries. We use a secure online platform. Please ensure you have a stable internet connection and try to position the video so that all members of the family are in view of the video screen. Learn more about our telehealth services.
If you are looking for FBT by telehealth in other states and countries, please check out the following websites:
Family-Based Treatment (FBT) is the leading evidence-based treatment for adolescents with anorexia nervosa and bulimia nervosa. One of the common misbeliefs I hear is that it’s “only for kids or younger teens.” However, I think it has a much wider applicability. In fact, I would say that my FBT training has significantly improved my effectiveness in treating eating disorder patients of all ages.
While there have not been studies of FBT that pull it apart and pinpoint the elements that drive its success, I have a few theories. One of the key underpinnings of FBT is meal support. People with eating disorders experience such crippling anxiety before, during, and after meals that it is no wonder they would do anything they can to avoid eating. When the brain is in a state of overwhelming anxiety, a person with an eating disorder cannot make logical decisions about what to eat—or even to eat. And yet, without eating there can be no recovery. Treatment centers understand this—providing regular meals has been the mainstay of residential and partial hospitalization (PHP) eating disorder treatment for some time. FBT is the in-home parallel to this treatment.
In FBT, parents are charged with nourishing their teens back to health by providing regular nutrient-dense meals and preventing purging, excessive exercise, and other eating disorder behaviors. Parents plan, prepare, serve, and supervise meals and after meals, if purging is an issue. They make all the food decisions. They sit with their struggling child during those terrifying meals and help their teens cope with eating amounts sufficient for them to get well. Over time they return control to their teens, building their capacity to fight the eating disorder on their own. It takes effort and time to change brain pathways that have made eating a scary experience. For this reason, even those patients with eating disorders who go on to higher levels of care usually don’t remain there long enough to develop the autonomous ability to eat enough to sustain recovery. They often continue to need meal support for some time after more intensive treatment.
I think FBT has applicability that spreads wider than just children and teens. There is preliminary evidence of its successful use with transition-age youth up to age 25. Many parents have reported successfully using it with their college-age children. I have used it with this age and the primary variation is that the young adult plays a bigger role in their own treatment. They must agree at least in theory to accept their parents’—or other caregivers’—support. The young adult may choose who will support them during meals. Some, for example, may have a college roommate provide support. Some parents do meal support via FaceTime when the young adult lives far away.
I should clarify that FBT is a manualized evidence-based treatment. To be done with fidelity it must comprise certain components, including a therapist who guides the parents in organizing their strategies to fight the eating disorder. Parents refeeding their child without a therapist’s oversight often state they are “doing FBT”. In this case, it is more accurate to say they are providing FBT-informed or carer-supported feeding. Regardless of the words we use to describe this support and whether or not a therapist is involved, I think it provides a core benefit that we can expand to other populations.
These principles can also be applied to adult treatment. I personally have supported an adult who was in PHP during the day and needed more support with meals outside of treatment hours. I applied the skills I learned in my FBT training to provide meal support to this person. It worked just like it did with teens. Obviously this adult was an active participant in their recovery who asked for my support. This does not mean that I did not encounter the same kind of anxiety and resistance that parents meet around meals.
Take another case —a 20-something patient who still lives with her parents. She has been doing so much better since she asked for help, trading in the restrictive foods she had been eating on her own for several years for family meals prepared by her parents. Or the case of a college student who gets support via FaceTime from her parents who live in another city. When working with young adults with eating disorders who are in loving relationships, we often work to help their significant others develop strategies to support them during meals.
My experience is not unusual. Many other FBT-trained clinicians report success with providing FBT-informed treatment to people from all walks of life. One dietitian has reported great progress working with an employed single adult who moved home to live with his parents so they could support with meals. Sadly, previous providers had pathologized his moving home as a sign of enmeshment. One therapist shared, “I am doing FBT with a 79-year old. She is now in phase 2. She can now go out on dates—she just has to send pictures of her food to her adult children who are taking charge of her recovery and have been in charge of plating her food.”
Many have realized that in-home meal support is a common need for patients, and naturally, it is starting to become a big business with several treatment programs now providing this service. Offered as a service, this individualized meal support can be very expensive. Far more convenient, cost-effective, and loving is meal support provided by parents, other family members, or significant others.
I personally see it as a sign of strength when an adult admits they need more help. There is no shame in needing meal support during your recovery no matter what your age. Moving back home to live with family for support is nothing to be embarrassed by. This disorder robs people of their ability to make decisions around food—outside support is needed by definition. If you struggle around mealtimes with deciding what to eat, only feel safe eating a narrow range of food, have been struggling to make progress in your recovery, or cannot manage urges to purge after eating, you are not alone. You may benefit from the addition of meal support. It may feel scary or embarrassing to ask for help and you may worry you are being a burden. But asking for help is a brave step and you will likely find that there are some people in your life who can do this for you. It sometimes requires a little creativity, but you may find that it makes a big difference in your recovery.
The short answer is: FBT can be for people of any age.
Chen, E. Y., Weissman, J. A., Zeffiro, T. A., Yiu, A., Eneva, K. T., Arlt, J. M., & Swantek, M. J. (2016). Family-based therapy for young adults with Anorexia Nervosa restores weight. International Journal of Eating Disorders, 49(7), 701–707.
Dimitropoulos, G., Freeman, V. E., Allemang, B., Couturier, J., McVey, G., Lock, J., & Le Grange, D. (2015). Family-based treatment with transition-age youth with anorexia nervosa: a qualitative summary of application in clinical practice. Journal of Eating Disorders, 3(1), 1.
Dimitropoulos, G., Landers, A. L., Freeman, V., Novick, J., Garber, A., & Le Grange, D. (2018). Open Trial of Family-Based Treatment of Anorexia Nervosa for Transition Age Youth. Journal of the Canadian Academy of Child and Adolescent Psychiatry, 27(1), 50–61.
This quote has generated a lot of reaction. In this podcast, Shira—who lives in a larger body when she is not using eating disorder behaviors—details how she has suffered from fatphobia in the world and in treatment centers. She shares that she has been significantly harmed by both well-meaning treatment providers and highly-regarded treatment centers.
This blog addresses two questions:
How is fatphobia affecting therapy and patients?
When is someone well enough to treat?
Shira is my friend and colleague. I regard her above quote to be a challenge to all treatment providers who have not faced their own fatphobia, including those who seemed afraid of Shira’s weight gain, tried to reassure her she was not gaining weight or would not gain weight, tried to help her keep her weight down, and limited her portions. These actions have harmed her by making her afraid to eat enough to sustain her healthy body weight and making her unable to fully recover after a 19-year history of an eating disorder.
Weight Stigma in Treatment
One incident Shira experienced in treatment was relayed to her friend, Sam Dylan Finch who described it in a blog post:
“The dietitian said, ‘You three get two scoops of ice cream.’ She then looked at me and said, ‘You’ll get a kiddie scoop.’”
Some of you won’t understand the gravity of that comment. To be clear, a dietitian told a patient with anorexia nervosa to eat less food than her peers, because she is a patient in a larger body.
The message here being, of course, that Shira needed to eat a child-sized portion of ice cream, because she wasn’t thin enough to “safely” consume more than that.
This plays directly into the eating disorder’s conviction that she needed to tightly control her food intake and her body. Her peers could eat a “normal” amount of ice cream. But she couldn’t and was singled out, because something was “wrong” with her body.
“This was the message I received my entire damn life,” Shira told me. “That I couldn’t eat like everyone else.”
— Sam Dylan Finch
The mixed messages of “eat ice cream” but “only a tiny serving” have further strengthened Shira’s eating disorder. The message treatment providers delivered over and over again was that her body needed to be controlled in order to avoid fatness. She yearned to be able to eat freely.
Shira also acknowledges that there were times in the past when she thought she was fully recovered. She only discovered years later after a relapse that what she thought was fully recovered was only partially recovered. How is this possible? Because we live in a culture where it is considered desirable and virtuous to maintain a low weight, deny ourselves tasty foods, limit the amount we eat, and exercise intensely. No other mental illness is so unfortunately reinforced by our cultural ideals.
And in terms of who is well enough to treat people with eating disorders, is recovery from one’s own eating disorder the only criterion that matters? How would we ever be able to vet that? How do we define recovery anyway?
I agree with Shira that there are many providers in the field who have not faced their own fatphobia. Focusing exclusively on providers who have had an eating disorder and whether or not they are recovered ignores a large portion of the provider community who do not have diagnosable eating disorders but may still be casualties of diet culture, wrestling with internalized weight stigma. These providers may be doing much more harm, but their impact has unfortunately received limited attention.
Providers With History of an Eating Disorder
Research indicates that a significant number of eating disorder treatment professionals have personally experienced an eating disorder. A study by De Vos and colleagues (2015) found that 24 to 47 percent of eating disorder clinicians reported a personal eating disorder history. An unpublished 2013 Academy for Eating Disorders online survey indicated that out of 482 respondents from professional eating disorder organizations, 262 (55%) reported a personal history of an eating disorder and half of those reported working directly with eating disorder patients. If we added subclinical eating disorders and disordered eating I have no doubt the rates would be higher.
Some have suggested over the years that providers with histories of eating disorders should never work in the field. This would be a mistake. Many professionals with their own personal histories (disclosed or not) have made major contributions to the field and to our understanding of eating disorders. Carolyn Costin, MEd, LMFT, CEDS and Mark Warren, MD, MPH, FAED are two public examples of prominent recovered professionals. In the broader field of psychology, one need only look at Marsha Linehan, Ph.D., who developed the leading evidence-based treatment for borderline personality disorder and other conditions based on her own experience of recovery from a severe mental illness to see that blanket restriction like this make no sense. In various surveys, patients have consistently reported it is helpful to work with providers who have had an eating disorder.
But even more complicated is the fact that we do not have a solid definition of recovery. In eating disorder research studies, recovery is often defined by three components:
Physical—BMI higher than 18.5 or another universal marker like expected goal weight;
Behavioral—absence of binge eating, vomiting, laxative use, or fasting; and
Cognitive—EDE-Q subscales about shape and weight concerns within 1 standard deviation of age-matched peers.
With dieting widespread (a 2018 study reported 36 percent of Americans were dieting), how many providers with disordered eating and their own extreme weight control behaviors go under the radar? How many providers may be engaging in their own intermittent fasting, keto diets, counting calories, or excessive exercise? I would agree with Shira that we should be equally if not more afraid of these providers.
Who is Fit to Treat Eating Disorder Patients?
If the field can’t decide who is recovered, who is to decide who is fit to treat eating disorder patients? Are therapists who acknowledge they have clinical eating disorders worse than fatphobic dieter providers who deny their own food issues and go on to shame patients, recommend any kind of dietary restriction, and limit the weight gain necessary for full recovery? How do we decide when someone is well enough to treat others?
The following quote from Carolyn Costin M.A., M.E.d., LMFT, FAED, CEDS and Alli Spotts-De Lazzer M.A., LMFT, LPCC, CEDS in their article for Gurze (2016), “To Tell or Not to Tell: Therapists With a Personal History of an Eating Disorder,” highlights an important point:
“Even if the field reaches its consensus on a definition of recovered—and then holds it up as the criteria for being able to be work with eating disorder patients—how would we verify a recovered status? Could standardized measuring and monitoring happen? When substance abuse facilities hire individuals who identify as recovering alcoholics or drug addicts, drug testing can verify if the person is considered clean and sober or ‘using.’ There is no similar test to determine if a person is ‘using’ his or her eating disorder symptoms. Some have suggested that therapists with personal eating disorder histories be subjected to clinical eating disorder assessments and ultrasound checks for ovarian size to determine if they are at a healthy weight (Wright & O’Toole, 2005). Without even discussing the actual merit of these as determining factors, would these tests be administered to all therapists who wish to work with eating disorders or just those who say they once had an eating disorder? And couldn’t those with an eating disorder history be able to avoid such testing by not disclosing they ever had an eating disorder?”
Costin and Spotts-De Lazzer go on to state, “It seems interesting and confusing that there could be so much proposed attention on therapists who have recovered from an eating disorder but not for therapists who have histories of depression, anxiety, post-traumatic stress disorder, or another diagnosis in their past.”
Perhaps we should be focusing on assessing providers for awareness of weight bias instead.
Further, if we shame Shira for being a provider with an eating disorder, how do we make it safe for other providers to acknowledge their own struggles and receive help if they have a lapse or relapse? Shira has reported that a significant number of providers have shared with her that they have struggled or are currently struggling. This says a lot.
So back to the question—how do we decide when someone is well enough to treat others?
I don’t have the answer to this question. The field has been unable to even define recovery.
Am I more afraid of fatphobic dieting therapists who may not be aware of their potential for harm than therapists who believe in and espouse Health At Every Size ® while acknowledging their own mental illnesses? Ultimately, yes, I am.
I think we need to look inward and address the rampant weight bias in the field. With dieting so widespread we have a lot of work to do. I believe everyone deserves treatment to full recovery and safety in their bodies. We need to address structural issues that limit access to care and safety. We need to make it safe for providers to receive help for eating disorders. I think it behooves every professional working with eating disorder patients to look at their own weight bias and work to practice from a weigh-inclusive approach. Only this way can we reduce the harm done to people like Shira.
Costin, C. & Spotts-De Lazzer (2016). To Tell or Not to Tell: Therapists With a Personal History of an Eating Disorder. Gurze Salucore, Eating Disorders Resource Catalogue.
Stych, A (2018). Percentage of Dieters More Than Doubles. Bizwomen: The Business Journals.
On September 18th, 2019 Instagram instituted an official policy that all ads promoting diet and weight loss products would only be able to be viewed by users 18 and over. Any ads that have false claims can be reported and subject to removal. This is a huge victory in the world of challenging diet culture. For years, celebrities and social media influencers have been advertising diet and weight loss products that, for the most part, are bogus, promise false results and can be just downright dangerous to someone’s physical and mental health.
Most celebrities who promote these products are doing so for a paycheck and not because they are actually finding these products useful. Unfortunately, advertisements like these can impact impressionable viewers, especially those struggling with poor body image, disordered eating and eating disorders. And while the celebrities may say, “Take this and look like me,” the reality is that these products have no true evidence that they can change anyone.
Emma Collins, Instagram’s public policy manager, made a statement after this policy went into effect, “We want Instagram to be a positive place for everyone that uses it and this policy is part of our ongoing work to reduce the pressure that people can sometimes feel as a result of social media.” While this is a great step forward, it does feel like the next step should be eliminating diet and weight loss products altogether.
There are some major problems with advertising weight loss products. As a Health at Every Size® activist and promoter of body positivity, I can tell you that these products merely reinforce the idea that your body isn’t good enough. They teach that there is only one ideal body, and usually, it is the body of the celebrity promoting the product. It can be really dangerous to tell people that tea will flatten their stomachs or a lollipop will give them curves in the “right” places.
These advertisements put people at risk for developing eating disorders. They promote the very behaviors that are symptoms of eating disorders. These products try to normalize appetite suppression or compensating for what one has eaten via a laxative pill or tea. The messages are not health-promoting. They reinforce diet culture beliefs of certain foods being bad and needing to atone for eating.
A major issue is that there is absolutely no evidence that the products being advertised actually help with weight loss, detoxing your body of toxins, or changing the shape of your body. Most of these products are not even approved by the United States Food and Drug Administration (FDA). The FDA is charged with regulating medications and while there are a few that have been approved, most that are advertised on social media are not. Most of these products carry false claims and use ingredients that can be more harmful than helpful. And that is a huge problem.
We do not often see celebrities sharing disclaimers of potential side effects from using these products. Diet pills may increase heart rate, heart palpitations, the likelihood of a stroke, and even death. The detox teas carry the risk of dehydration, electrolyte imbalance and stripping our guts of the nutrients we need. Side effects can also include an increase in stomach cramping, bloating, and diarrhea. Our bodies were designed to naturally flush out toxins. It is why we have a liver. And for those users of the products looking for a way to lose weight, well the weight “lost” from these teas are usually just water or stool mass. These products place a huge toll on the body and put vital organs at risk.
For these reasons, we should not only be protecting social media users who are under 18. We should be protecting everyone from viewing these ads. Adults are probably more likely to purchase these products and adults are just as susceptible to false promises as adolescents. It is great that places like Instagram are giving us a choice if we want to view these ads. It is definitely a step in the right direction. But, there is nothing safe about these products. From taking a physical toll on our bodies to mentally placing shame on our bodies there is no room for diet pills, detox teas, or any other weight loss product.
If you are currently struggling with how you feel about your body, help is available through support groups, therapy, and even body-positive accounts and groups on social media. The wonderful thing about social media is that there is a community for promoting Health at Every Size® and working on self-love and acceptance. Most of these groups do not cost anything and can have to have positive effects on your mind and body.