Harriet Brown joined us to discuss her book, Body of Truth: How Science, History, and Culture Drive Our Obsession with Weight – and What We Can Do About It. What follows are our questions in italics, and Harriet’s thoughtful answers.
In your introduction to Body of Truth: How Science, History, and Culture Drive Our Obsession with Weight – and What We Can Do About It, you comment that “Obsessing about weight …” has “become social currency not just for women but for teens and even children.” We’d like to hear more from you on this.
What I mean by that is that it’s become de rigueur for nearly everyone to be self-deprecating about their weight, to bemoan how “fat” they are, and to publicly aspire to a different, thinner body. If you don’t participate in this ritual of self-flagellation you are automatically outside the social circle (or most of them); you can be thought stuck-up, conceited, arrogant if you don’t hate on your body.
Can you please discuss some of the ways professionals use fear to motivate adults and children to lose weight?
They do it through health scare-mongering: “You’ll die early if you don’t lose weight!” or “You’ll develop diabetes if you don’t lose weight!” Fill in the blank for pretty much any illness you can imagine.
What would you like people to know about “the 5 per centers”?
They’re a group that prioritizes weight loss above just about everything else in their lives. Almost without exception they say they maintain their weight loss by devoting a LOT of time and energy to it. They also tend to devote a certain amount of mental real estate to counting calories and tracking calories burned, and keeping up a certain level of hyperawareness about food and eating. They tend to weigh and measure their food. They also tend to eat relatively few calories, which makes sense because every major weight loss resets the metabolism so it requires fewer calories.
In your opinion, what are some of the problems that can develop from a “good food/bad food” belief system?
Demonizing certain foods makes them more attractive in a sense. Highlighting “good” foods also sends a message that these are unattractive but necessary. Setting up this kind of dichotomy tends to send people boomeranging from restricting to disinhibited eating, neither of which is useful for supporting good health (mental or physical).
Medical professionals seem to span a range of beliefs on weight, weight gain, weight loss, and BMI. What questions would you suggest a potential patient ask when looking for a health care provider who is without weight bias?
For starters there’s a website where someone has compiled a list of “fat-friendly” doctors, and it’s at http://fatfriendlydocs.com/. Beyond that I think it’s more than fair to set up a time to talk to a doctor about her/his philosophy on any number of things, including weight and health. One good question if you’re talking to a doctor about a specific health issue is, “How would you treat someone who was thin and presented with this same problem?”
What were some of the critical pieces that came together for you to appreciate your self and move on from years of body loathing?
I think I’d reached a real low point in my relationship with my own body, and a sense that I just couldn’t keep doing what I’d been doing, i.e., hating my body and myself. I felt I was setting a terrible example for my daughters. So I think I was ready. And then I was lucky enough to have a therapist who really knew her stuff on this issue—Ellyn Satter, who I consulted by happy coincidence.
“Maintain” seems like a relatively calm verb. Merriam Webster defines maintain as, “to cause (something) to exist or continue without changing. : to keep (something) in good condition by making repairs, correcting problems, etc. : to continue having or doing (something)” Of the definitions the second one best describes it best. To have a healthy body image, people have to actively do something and remain vigilant to repair and correct. Body image is like a wood fence that is constantly weathered by the environment of thin and perfectionistic ideal images. It becomes necessary to teach clients how to “maintain.”
From the earliest studies of eating disorders 40 years ago, researchers have noted the influence of cultural standards of beauty and thinness. Consider the classic study by Garner and colleagues that demonstrated that the thinning of magazine models’ sizes coincided with increases in eating disorders during the 20th century ( Garner, Garfinkel, Schwartz & Thompson, 1980). It has been observed that as cultures become industrialized/westernized the rate of body dissatisfaction and eating disorders increases (Nasser, Katzman & Gordon, 2003). These authors presented data showing eating disorders are most impactful in emerging and second world economies. The majority of young women in the U.S. are dissatisfied with their bodies and idealize a size that few obtain. Increasingly, young men are also experiencing these pressures to change their bodies (Bucchianeri, Arikian, Hannan, Eisenberg, & Neumark-Sztainer, 2013). Those with positive body image are people who reject the cultural ideal. Put more simply to develop or assist a client in developing a positive body image is to work to become abnormal.
A number of approaches work on a cognitive basis and these have been explored for several decades. For example, Cash’s (1997) Body Image Workbook for clients is based on research into cognitive research to change body image beliefs. (See also Cash & Lavellee, 1997, for research). Key goals are: helping people become aware of how unrealistic the cultural body image ideal is and raising awareness of automatic negative thoughts and working to create positive self-talk.
It may help at times to focus on non-appearance or non-weight related aspects of the self. One of the newer approaches that incorporates that view is ACT (acceptance and commitment therapy). In ACT there is acceptance of the negative thinking but clients are encouraged to step outside of that thinking to follow goals and values that are meaningful. Positive feelings come from acting in accordance with personal goals. Pearson, Heffner and Follette (2010) review the theory, research and techniques of this approach.
Another variation of the cognitive approach is the use of cognitive dissonance in improving body image. Stice and colleagues have extensively demonstrated in prevention programs that these techniques are effective, long-lasting and boost body image (Stice, Shaw, Burton & Wade, 2006; Stice, Marti, Spoor, Presnell & Shaw, 2008 and Stice, Durant, Rohde & Shaw, 2014). The key idea is that by asking participants to encourage positive body image in others, a cognitive dissonance is created with their own negative views. This dissonance drives an internal shift in attitude to align self-related cognition to the expressed behavior. On the surface it may seem backwards, but these techniques have been empirically validated multiple times by the research group as well as others (e.g. Becker, Smith & Ciao, 2006). In my own work with teen groups these methods are very engaging and create lots of active dialog.
Those of us who work with eating disorder clients know that many treatment centers also employ expressive/movement therapy and yoga to improve body image. There have been few studies of these experiential methods. Much more research is needed. Koch, Kunz, Lyko, and Cruz (2014) were able to support the efficacy of dance therapy across studies in their meta-analysis. Both body image and overall well-being improved. Researchers have also begun to look at the impact of yoga and body image with some positive findings such as Dittman & Freedman’s (2009) study. Other studies present a cautionary note such as in Neumark-Sztainer, Eisenberg, Wall, and Loth (2011). These authors observed in a study of over 2000 individuals that many who participated in yoga or pilates had higher rates of body image and eating pathology. Perhaps these individuals are recognizing the need for change. However it is useful to know what is in the community when therapists recommend different activities for maintaining positive body image.
Taken together there are many strategies for maintaining good body image and research has helped us along the way. We can challenge cognition, strengthen our values and intentions, express counter-culture body image messages, and finally engage in physical strategies through dance and yoga. We seem to have enough strategies to appeal to everyone in our quest to overcome stormy cultural seas and maintain positive body image.
When I ask my patients who struggle with binge eating to identify triggers for their episodes, they frequently point to words and actions of family members and loved ones. Often the report sounds something like this, “I know he/she was trying to help me lose weight, but when he/she asked me ‘should I really be eating that piece of cake’, it just made me want to devour the whole cake and then see what else was in the pantry.”
Family members (including parents, spouses and siblings) and friends of people who binge eat are in a tough spot. Even when their intentions are good, the comments they make about the binge eater’s food choices or body size can trigger emotions in the binge eater that trigger urges to eat.
Shame is one such emotion that is commonly triggered. Anger, resentment, and fear are others. Even when the family member is not being overtly critical or shaming, someone who feels ashamed about their eating or body is easily triggered when these topics are commented upon. Sometimes an intended compliment from a family member observing that the binge eater “ate less than usual” or “made a healthy choice” or “seems to be getting thinner” can trigger shame for past behavior that was less optimal. Binge eaters are typically sensitive to attempts by others to control their eating and body, and a resistant part of the binge eater may respond with a desire to eat fast and furiously as an act of rebellion.
Loved ones who want to be helpful can usually find the best guidance by talking with the person struggling with eating. Start by expressing your desire to help and simply ask “what, if anything, could I say that would help you if I see you starting to eat inappropriately?” Many of my patients will ask family members and friends to offer to do something together that soothes and distracts without calling attention to the eating. For example, one may offer to take a walk together, go out somewhere, or engage in a mutually enjoyed activity that is not compatible with eating, such as a game. Each patient is different in what they need but many agree that a genuinely compassionate desire on the part of the family member or friend to be helpful along with the absence of judgment or frustration with the binge eater are most important.
Sometimes, the impact of loved ones is through the environment rather than words. Parents or spouses might bring food into the house that tempts the binge eater. Sometimes the family member doesn’t realize the food will be too tempting for the binge eater but feels justified because they or other people in the family want that food to be available. Here, too, a family member faces a challenge to find the right balance between trying to help the binge eater and meeting other needs. There is no single solution to the problem of what foods to keep in the home, and this is best discussed openly and honestly so fair compromises can be reached. For example, there could be a certain time frame when some foods are avoided, and then, at a later time when skills for resisting binge urges are better developed, those edibles can be reintroduced. Or perhaps some types of “fun foods” can be identified that are less tempting for the binge eater and can be substituted. Almost always, one thing that can be done is to keep typical binge foods out of sight (e.g., in the back of cabinets, fridge or freezer, or in the basement or in someone’s car trunk) and therefore, hopefully, out of mind. Though binge urges are often triggered by thoughts, emotions, and body sensations, the sight of tempting food can sometimes become the difference between a patient giving in to a binge or not.
The environment created by a binge eater’s loved ones is not only through food and direct comments, but also through the way that bodies are discussed. For example, a friend that frequently comments on people’s appearance and weight sends a message. Making statements about a movie star who gained or lost weight, or a family friend or acquaintance who is “looking good,” whether the judgments are positive or negative, conveys the idea that people are being primarily judged based on appearance. This type of communication sticks with many binge eaters and adds to self-disgust and self-judgment. Binge eaters, whether they are obese, overweight, or normal weight, are acutely aware of the impact that their eating patterns could potentially have on their weight. A family environment that keeps the focus on weight is a shaming environment, regardless of how much love for the binge eater is expressed in other ways.
Family members will often ask me how they can help their child or spouse reduce binge eating. Often, the answer is to hold an attitude of genuine compassion for the binge eater’s struggle with their habits and urges and a genuine acceptance of the binge eater as a lovable person, even if their body size causes the parent or spouse anxiety or disgust. Binge eaters by definition feel self-disgust. Often asking the binge eater what types of comments or actions would be supportive and what types of comments or actions are triggering will give the family member important information. For example, being a good listener when the binge eater wants to talk about something bothering him or her, or spending family time in ways that don’t revolve around food are often identified by my clients as ways their family members have been helpful to them.
As a therapist for people who binge eat, I usually assume that there will be no significant change in family dynamics, at least in the early phases of treatment. I, therefore, don’t send the message that symptom improvement depends on a family member changing. Rather, my job is to teach the binge eater skills to resist urges to binge and these include skills for managing emotions triggered by family dynamics. This is where skill-based therapies such as Dialectical Behavior Therapy and other Mindfulness-based therapies have so much usefulness. These therapeutic approaches for binge eating center around the skill of observing emotions, thoughts, and body sensations that arise in one’s self moment to moment. Noticing urges-to-eat that arise in response to a loved one’s comment can then allow a choice to be made about whether to act on the urge by eating or whether to take a different path. Taking a different path requires strategies for soothing oneself without escaping into a trance of eating and for mindfully absorbing oneself in activities and sensations that will reduce one’s urge to eat. Also, interpersonal skills, such as assertiveness in asking for what one wants or does not want without threatening the relationship can often reduce the impact that family and other relationships have on the binge eating illness. It is helpful to view binge eating as an illness that can be improved by skills, perspectives, and strategies, rather than a flaw in the character of the binge eater.
Before ending this article is it important to point out that binge eating is complex and often very stubborn to change, like other addictive behavior patterns, and is certainly not caused by family dynamics. If someone is binge eating, it does not mean that his or her family or friends are doing something wrong. Many of my patients describe their loved ones’ compassion and support as the one thing they are lucky to have, otherwise their problem would be significantly worse.
By Carolyn Costin M.A., M.E.d., LMFT, FAED, CEDS and Alli Spotts-De Lazzer M.A., LMFT, LPCC, CEDS
This is the first of a 2 Part series on Recovered Therapists and the Treatment of Eating Disorders.
Whether or not a therapist with a personal history of an eating disorder should treat patients with eating disorders and disclose that history has long been a subject of debate. The discussion continues—without resolve—between proponents in favor and those who oppose such self-disclosure. It is important to note at the outset of this article that both authors are therapists who have recovered from an eating disorder and support appropriate self-disclosure in the therapeutic relationship. We believe that being recovered from an eating disorder can be a significant asset when working with eating disorder patients.
Research indicates that a significant number of eating disorder treatment professionals have personally experienced an eating disorder. Early reports suggested about one out of three or four (Barbarich, 2002; Bloomgarden, Gerstein & Moss 2003; Johnston, Smethurst, & Gowers, 2005; Shisslak, Gray, & Crago, 1989; Warren, Crowley, Olivardia, & Schoen, 2008). More recent reports indicate perhaps even higher percentages. De Vos and colleagues (2015) noted that eating disorder clinicians with personal eating disorder histories ranged from 24% to 47%. The 2013 Academy for Eating Disorders online survey (unpublished) spearheaded by Dooley-Hash, de Vos, and the Professionals and Recovery Special Interest Group, revealed that out of 482 respondents from the Academy for Eating Disorders, International Association of Eating Disorders Professionals, Binge Eating Disorder Association, and Sports, Cardiovascular, and Wellness Nutrition, 262 (55%) reported a personal history of an eating disorder. Of the 262 professionals with personal histories of eating disorders, 182 (51%) reported working directly with eating disorder patients. Since many eating disorder therapists have had eating disorder histories, and according to Bloomgarden and colleagues (2003), 67% of therapists surveyed used self-disclosure in their treatment approach and “all recovered clinicians used it in their therapy in some way” (p. 165), it seems important to explore this topic further and assist clinicians in this area.
Over the years, some have suggested that clinicians with eating disorder histories should not disclose this to clients, while others have suggested they should not even work with eating disorder clients. As reported by Johnston and colleagues (2005), Clothier, MacDonald, and Shaw (1994) suggested that individuals with an eating disorder history be banned from the nursing profession, while Bullock (1997) recommended they be banned from all healthcare professions in the United Kingdom. Many have expressed concerns, listed potential disadvantages, and devised parameters to follow if a clinician with a personal history of an eating disorder wants to work in the field. In 2003, the issue was debated by the European Council on Eating Disorders, however, an agreement on whether clinicians with a history of an eating disorder are at a disadvantage when working with eating disorder clients could not be reached. What are the factors keeping us from some kind of consensus on this issue?
This article briefly looks at the history and literature on the topic of clinicians with an eating disorder past, explores values and pitfalls of these clinicians disclosing or not disclosing their history, the need to clarify terms in the field, and defining “recovered.”
The Value of Recovered Clinicians
Carolyn: “I saw my first eating disorder client in 1979 and told her I was recovered from an eating disorder. I also said, ‘If I recovered, so can you.’ She recovered and I’ve been saying the same thing to all clients ever since. Sharing my eating disorder history and serving as a role model and guide for others has been a huge aspect of my success as a therapist in the eating disorder field.”
Alli: “As a developing eating disorders therapist, I sought a place to train where I didn’t have to hide that I once had an eating disorder and could allow that personal experience to be a part of the work—not a dominant part, as the clinical aspects need to be, but not a hidden part, either. So my first day as a trainee therapist was with Carolyn Costin at Monte Nido. Almost 10-years later, I can wholeheartedly say that both having learned appropriate parameters about, and having had permission to disclose my status of being recovered has helped many of my clients to believe that freedom from an eating disorder is possible—AKA ‘hope.’”
Carolyn: “I learned early on that a recovered clinician has the unique value of having lived with a brain that was once hijacked by an eating disorder and then having successfully gotten their real brain back. Having been through it, these clinicians can explain to clients, as well as to other clinicians, from a personal perspective, the mind set of someone with an eating disorder. Recovered clinicians can confront and challenge clients while empathizing in a deeply connected and personal way with the client’s fear of giving up the disorder. A recovered clinician is unlikely to encounter resistance that comes in the form of common refrains such as, ‘You just don’t get it’ or ‘Unless you’ve been there, you can’t understand.’ Over the last three decades I have hired and trained countless recovered clinicians to work with me at various levels of care, all the while receiving consistent reports from clients and families that working with a recovered therapist was a significant factor in their treatment success.”
Though there is little research on the topic, informal surveys and interviews pointed out that eating disorder patients felt that exposure to people with recovery, those who understood the illness or have recovered, was or would have been beneficial (Eivors, Button, Warner, & Turner, 2003; Redenbach & Lawler, 2003). In “Been There, Done That,” Costin and Johnson (2002) delineated advantages and disadvantages of clinicians with personal recovery and concluded that advantages outweigh the disadvantages thus “organizations need to acknowledge the useful contributions these clinicians can make to the field” (p. 303). Eleven years later, using qualitative and quantitative methods, Warren, Schafer, Crowley, and Olivardia (2013) revealed many similar benefits of utilizing therapists with eating disorder histories such as increased relational understanding, empathy, and knowledge of the disorder.
A recent and significant contribution by de Vos, Netten, and Noordenbos (2015) came from a survey at their clinic, Human Concern, where they examined both patients’ and clinicians’ experiences of treatment when the therapist was a self-disclosing, eating disorder-recovered clinician. Of the 205 patients who responded (out of 357), 97% indicated that the experiential knowledge of recovered therapists was beneficial in the therapy. Advantages included: the patient feels attunement (recognized, understood, and heard), therapy safety (equitable relationship with high levels of acceptance), the therapist seems available (authentic, open, honest), the therapist has enhanced awareness (knowledge and insight) into the eating disorder, and the patient feels increased hopefulness regarding healing and recovery. Overall, 93% of the patients indicated that the therapy provided by a recovered therapist positively influenced their recovery. Of the 32 recovered therapists who worked at Human Concern during the study and who received a mailed questionnaire, 24 (75%) completed the questionnaire. Of these therapists, 100% endorsed the same advantages as those reported by patients’ and additionally listed the following benefits: quickly bolstering therapeutic trust and cooperation in the working alliance, reducing fear and feelings of shame (the clients knew the therapist had been there or some place similar), providing a positive example (role model), having high empathy, and motivating positive change.
Potential Pitfalls of Clinicians with an Eating Disorder History
Along with potential benefits, Costin and Johnson (2002), de Vos and colleagues (2015), and Warren and colleagues (2013) presented very similar potential risks, limitations, and pitfalls that might arise when therapists who have a personal eating disorder history work with eating disorder patients. Costin and Johnson pointed out the risk of relapse and various kinds of countertransference including having narrow views of how recovery takes place and a high sense of personal mission that could lead to over-involvement. De Vos and colleagues reported potential concerns from both patients and therapists. Patients cited the possibility of making comparisons and becoming overfamiliar with the therapist as a potential negative of therapist self-disclosure, and clinicians noted potential disadvantages as increased projection, over-identification (based on personal versus client experience), and risk for over-involvement or closeness with the patient. Warren and colleagues cited clinician-related potential risks as: over-identification or biases from personal history, countertransference, and experiencing feeling triggered, which can result in setbacks or relapses for some.
Relapse concerns were highlighted by Barbarich (2002), where 27 out of 97 (28%) of eating disorder professionals with a history of an eating disorder reported relapse after entering the field as a professional. However, there are important questions to ask about this study: 1) Were these therapists “recovered,” did they describe themselves as recovered? 2) Did the therapists have at least two years of being recovered before working in the field? 3) How many of these therapists kept their personal histories concealed from colleagues and/or patients? 4) How many of these clinicians received guidance or supervision in how to appropriately use their history in their work? Of note here is that Carolyn has worked with recovered clinicians in various treatment settings for 30 years. Adhering to hiring clinicians who consider themselves recovered for at least two years and providing consistent guidance and supervision has resulted in only one known case to date where a recovered staff member relapsed.
Clarification of Terms
Many people think that the terms “recovery,” “recovering” and “recovered” are just semantic and do not make much difference. We respectfully disagree. When related to how people might view clinicians with eating disorder histories, these terms can be confusing.
Early on in the eating disorder field, professionals and patients started applying the 12 Step program, disease model of addiction, and corresponding language to the treatment of eating disorders. Though Bill Wilson included the term recovered in the Big Book of Alcoholics Anonymous, substance abuse and chemical dependency circles rarely use it and more widely utilize two other terms, recovery and recovering. However, these terms become vague and ambiguous when applied to eating disorders. To say, “I’m a recovering alcoholic” or “I’m in recovery from alcoholism,” typically means the person is notdrinking and acknowledges a lifelong disease/addiction. When a person with an eating disorder says, “I’m a recovering anorexic” or “I’m in recovery from anorexia,” what does the person actually mean? The truth is, someone who says this can mean any number of things such as, the person is in residential treatment, has just discharged from a treatment program, or has been well and normal weight for 10 years.
We respect that the terms recovery and recovering connect, inspire, and work for many. Our hope is for the eating disorder field to come up with a clear and accepted definition of recovered that denotes a person who is no longer engaging in symptoms or suffering from the illness. If clearly defined, the term recovered could be unifying and helpful to clients, practitioners, researchers, and carers alike.
Though there is no consensus, most people would likely agree that to be “recovered” from an eating disorder, there must be an absence of clinically diagnostic behaviors. However, many would also likely agree that this alone is insufficient. What if someone’s only symptom is purging once or twice every other week? Even though the person’s behaviors would not meet diagnostic criteria, most could agree that calling such a person recovered would be incorrect. Likewise a person who is abstaining from overt symptoms while restricting calories, fighting the urge to purge, weighing and body checking multiple times a day, and/or unable to eat with others or in restaurants should not be considered recovered.
Carolyn, who has been self-disclosing and using the term recovered for over three decades, knew it was important for her to define what she meant by the term. Her definition can be found in her books, 100 Questions and Answers About Eating Disorders and the 8 Keys To Recovery From an Eating Disorder:
“Being recovered is when the person can accept his or her natural body size and shape and no longer has a self-destructive relationship with food or exercise. When recovered, food and weight take a proper perspective in your life and what you weigh is not more important than who you are; in fact, actual numbers are of little or no importance at all. When recovered, you will not compromise your health or betray your soul to look a certain way, wear a certain size or reach a certain number on the scale. When you are recovered, you do not use eating disorder behaviors to deal with, distract from, or cope with other problems.”
Both authors have repeatedly experienced clients who come to us after years of struggling with an eating disorder. These clients often report finding both motivation and a sense of hope in knowing that we were once seriously ill but are now recovered. Exposure to those who are recovered, whether clinicians, friends, celebrities, speakers, etc., is important for anyone who has an illness as it provides real proof that being recovered is possible.
Though we firmly believe that clinicians who are recovered from an eating disorder can be in a unique position, we acknowledge complexities that can come from how self or others determine when a clinician is “recovered enough” (Bloomgarden et al., 2003) to safely work with clients who have eating disorders.
How can we know when a person is really recovered? In “Eating Disorder Counsellors With Eating Disorder Histories: A Story of Being ‘Normal,’” Rance, Moller, and Douglas (2010) commented on and critiqued information gleaned from interviews held with therapists who had personal eating disorder histories. The theme of an “emphasis on normality” (p. 382) emerged, meaning that the therapists repeatedly stressed the message that “I am normal” (p. 385) in regard to food, weight, and body attitudes and that their work with eating disorder clients didn’t affect these attitudes. Examples included being free of their eating disorders (“When I got better”), eating normally (e.g., “I’m comfortable about eating”), and body acceptance (e.g., “I’m really ok with my body . . . I don’t mind its changes”) (p. 384-385). The authors added that the clinicians’ expressions generally contradicted research (Shisslak et al., 1989; Warren et al., 2009) indicating that it could actually be more normal to have their attitudes on food, body and weight impacted when working with clients with an eating disorder. Statements made that emphasized normality were originally explained as “adamant assertions” that involve “denial” (p. 389). Fortunately the authors considered an alternative interpretation—that recovered clinicians likely have worked through body, weight, and food issues and have thus “developed a far healthier relationship with these issues” than much of the population (p. 389).
Alli ; “I remember when I first began as a Mental Health Worker at Monte Nido; a miscommunication happened that led to a meeting with Carolyn to discuss and assess my recovered enough status. Not knowing what to express that would ameliorate or clarify the concern, I said, ‘I think this is like the situation where a sane person is accidentally admitted into a psychiatric ward, and anything that person says is not going to be helpful. If it’s OK with you, just watch me.’ I knew that time and observation, not words, would reveal whether I was recovered. And yes, I admit that having self-disclosed my recovered status at work added a layer of stress in that I felt ‘watched,’ but the benefits of being able to train at Monte Nido and harness how to use my past eating disorder experience in helpful ways far outweighed the time limited period of anxiety.”
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?
Other suggestions have ranged from ongoing assessments of the recovered clinicians’ relapse potential, how they conduct therapy, and a myriad of other “indicators.” Some have recommended that for clinicians with an eating disorder history the following should be regularly assessed: absence from work, inability to make decisions or cope in emergencies, seeking therapeutic relationships with colleagues, potential risks to patients, and potential to collude with the patients and their illness. After almost thirty years as clinical director of eating disorder day treatment, residential, and hospital programs, it is noteworthy that Carolyn has not seen higher incidences of problems in any of these areas with her recovered staff verses her staff with no eating disorder history. 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. We leave readers to ponder that question.
The Downside of Not Telling
There is another important consideration here that is seldom discussed. Clients often directly ask their eating disorder therapist whether he or she ever had an eating disorder. Is not disclosing an eating disorder history a risk-free option?
Bloomgarden (2000) noted that when she was treating eating disorder patients and actively withholding her own eating disorder recovery, a barrier was created that negatively affected her working alliance with patients. Others have acknowledged the same was true for them. For example, over the last few years eating disorder physician, Dr. Mark Warren, has been speaking to audiences about clinicians and recovery after finally revealing his own eating disorder history on a panel with Carolyn at a national conference. Dr. Warren told the audience that not disclosing his eating disorder history to patients and their families became so distressing that it undermined his sense of integrity and finally caused him to disclose his eating disorder past.
What Else to Consider
The implications surrounding therapists’ personal disclosure are far reaching and involvea myriad of considerations that cannot possibly be covered in this article. Considerations include: clinical issues; ethical concerns; legal ramifications; human resource management; hiring policies; training and supervision; countertransference problems; self-disclosure guidelines; potential and actual relapse red-flags and concerns; and necessity for research on the pros and cons for both client and clinician, including outcome studies.
Clinicians with a personal history of an eating disorder should be able to make their own decision about whether or not to work with eating disorder patients and whether or not to disclose their personal history. Some colleagues practice a “tell only when asked” policy, meaning they share only if asked by patients or colleagues. Some choose not to share at all, and some share as a routine part of their work. Our ultimate goal is to explore how clinicians with a personal history—who want to use it in their work—can best do so while also recognizing the many related complexities.
Without the existence of widely accepted guidelines that can help eating disorder clinicians to effectively use self-disclosure and personal eating disorder experience, the only guiding ethical cornerstones that exist are to do what is in the best interest of the client and do no harm; however, determining what these mean is up to each individual. For now, any clinician considering self-disclosure, will have to rely on introspection, colleagues, training, professional ethics, consultation, tenets of their dominant theoretical orientation, client feedback, and supervision or employment policies.
In the hopes of generating further discussion and assisting clinicians with an eating disorder past, a second article will be devoted to guidelines for self-disclosure and how to use one’s eating disorder history when working with patients.
Juliet is a 16-year-old female who was admitted to the hospital due to chronic abdominal pain, nausea, early satiety, and significant weight loss/malnutrition. She has a long-standing history of intermittent abdominal pain and anxiety and more recently has developed a fear of nausea or vomiting after eating. She denies any concerns about weight gain and reports wishing she could eat like her peers and gain weight.
Jonathan is a 7-year-old male who had a recent traumatic experience where he choked on a chicken bone during dinner. Since that time he has become increasingly afraid of eating most solid foods which has led to rapid weight loss over the past two weeks. His parents report that he appears highly anxious before meals and will often cry and yell when presented with food.
Eating disorder treatment programs and hospitals have long encountered this subset of patients who present with food avoidance and low weight but lack fear of weight gain or becoming fat, a core diagnostic criterion of anorexia nervosa. Under the DSM-IV criteria, the types of patients mentioned above would likely have been diagnosed with eating disorder not otherwise specified (EDNOS). Unlike anorexia nervosa (AN) and bulimia nervosa (BN) which are better defined and understood by providers, EDNOS was often more of a “catch all” category for patients who did not fit neatly into the AN or BN diagnostic criteria. In fact, the majority of patients presenting with eating disorder symptoms were given a diagnosis of EDNOS (Fisher,Gonzalez, & Malizio, 2015; Peebles, Hardy, Wilson, & Lock, 2010).
The EDNOS category was made up of a myriad of patient presentations. For example, EDNOS was a frequent diagnosis for patients with less severe or less frequent symptoms of AN or BN and also for patients with significant medical sequelae related to malnutrition from symptoms such as severe selective eating habits or fear of nausea/vomiting. Due to this range in patient presentation and symptom severity, EDNOS was sometimes perceived as less serious than other eating disorders. For patients like Juliet and Jonathan, this was simply not the case. In fact, there is evidence to suggest that patients with EDNOS were more medically compromised than patients with BN (Peebles et al, 2010) and had similar types of medical complications, although less severe, than patients with AN (Peebles et al, 2010; Strandjord, Sieke, Richmond, & Rome, 2015). Moreover, in a retrospective study Norris et al. (2014) found that almost one third of patients who met criteria for ARFID required hospitalization due to medical instability. Clearly further diagnostic clarification within the EDNOS category was called for and the DSM-5 sought to remedy this in part by further defining this subset of patients.
What is ARFID?
Avoidant/restrictive food intake disorder (ARFID) is defined as an eating or feeding disturbance resulting in failure to meet nutritional needs. This disturbance is associated with one or more of the following: significant weight loss or failure to gain weight as expected, significant nutritional deficiency, reliance on some type of nutritional supplement or enteral feeding, or significant interference with psychological functioning. A key feature that differentiates ARFID from AN and BN, is that the patient with ARFID does not exhibit, and there is no evidence of, concern about weight or shape. The DSM-5 goes on to specify that the eating disturbance cannot be due to lack of food or cultural reasons and is not due to another mental or medical condition. ARFID can manifest in children, adolescents, or adults but is most common in children (American Psychiatric Association, 2013).
Although this is a new diagnosis and much is likely to be discovered about prevalence, associated features, and treatment of this disorder, there is initial evidence regarding characteristics of ARFID. Compared to other eating disorders, patients diagnosed with ARFID tend to be younger, have been ill for longer, have higher rates of comorbid anxiety and medical conditions, and have lower rates of depression (Fisher et al., 2014). Also, a higher proportion of patients with ARFID are males when compared with other eating disorders (Fisher et al., 2014; Nicely, Lane-Loney, Masciulli, Hollenbeak, & Ornstein, 2014). In a recent study, Fisher et al. (2104) identified several common ways ARFID presented in their sample, including: selective eating (28.7%), generalized anxiety (21.4%), gastrointestinal symptoms (19.4%), a past history of vomiting or choking (13.2%), and food allergies (4.1%). Kurz et al. (2016) categorized patients with ARFID in a different manner but also found a high percentage of patients presented with selective eating habits. This study also identified patients with poor food intake related to an emotional disturbance (e.g., anxiety) as well as patients who avoided food due to some specific fear (e.g., choking) (Kurz, van Dyck, Dremmel, Munsch, & Hilbert, 2016). To date there has been one study examining ARFID in adults and there were some differences found from pediatric patients. Specifically, in this study patients with ARFID were all female and most had poor food intake due to emotional difficulties with a smaller percentage due to gastrointestinal complaints (Nakai, Nin, Noma, Teramukai, & Wonderlich, 2016).
Picky Eating vs. ARFID
It is important to note that selective or picky eating is fairly common, especially among younger children (Nicely et al., 2014). Children may avoid foods due to taste, smell, or texture and numerous parents have experienced a phase when their child only ate a select number of foods or refused to eat entire food groups. For many children this will resolve or children will still be able to meet their nutritional needs in spite of low variety of foods consumed. However, when picky eating results in failure to gain weight, significant weight loss, nutritional deficiencies, or issues with psychological functioning, then a diagnosis of ARFID is likely appropriate.
How Can I Tell if My Child is At Risk: Tips for Parents
Some of the reasons for disrupted eating patterns may be more straightforward for parents to identify than others. For example, ARFID symptoms are easier to detect when the child experiences a specific incident such as a traumatic choking episode or a period of vomiting that results in food avoidance and significant anxiety related to eating. Knowing when picky eating or gastrointestinal complaints with food avoidance cross the line into ARFID may be more challenging. The most tangible warning sign for parents is weight loss or lack of weight gain. Many parents do not regularly weigh their child but may notice that their child’s clothing has become baggy, they appear thinner, or they are not growing at a similar rate as their peers. As mentioned above, many children go through a period of picky eating which may be worrisome for parents. Fortunately, picky eating is not necessarily a problem unless it results in health issues or interferes with the child’s functioning in a significant way. When gastrointestinal symptoms accompanied by significant weight loss have been evaluated by a physician and found not to be due to an underlying medical condition, ARFID may be considered. Other warning signs include increased parental frustration that eating has become a “battle” due to their child’s anxiety about consequences of eating (e.g., nausea), narrowing of food preferences, or apparent lack of interest in eating. Parents also may be shocked to find that their child is hiding/throwing away food instead of eating it or not being truthful about the amount of food eaten due to the child’s anxiety about eating.
How Can I Tell if My Patient is At Risk: Tips for Physicians
Given the weight loss and potential medical complications associated with ARFID, physicians may be the first point of contact for these patients and their parents. Physicians may notice that a child has a persistently low percentage median body weight, has “fallen off” of his or her typical weight/growth curve, or that his or her weight/growth curve is trending down (Bryant-Waugh, 2013; Fisher et al., 2014). More specifically, examination of the child’s body mass index (BMI) will help determine if there has been significant weight loss, failure to gain weight, or failure to grow in height at the expected growth trajectory. However, other times clues may be less obvious such as slowly becoming increasingly selective with foods, decreased interest in eating, eating smaller and smaller amounts of food, increased gastrointestinal complaints or general somatic complaints (e.g., headaches, not feeling well, etc.) related to eating, or increased anxiety around meal times. Thus, when physicians notice weight loss or failure to meet expected growth, it is important to inquire further about a child’s feeding patterns, any changes in eating habits, and what seems to be impeding eating such as somatic symptoms or anxiety. Asking parents to bring in a food log or describe their child’s typical food intake can help physicians determine if nutritional needs are being met. Physicians should also look out for medical indicators of nutritional deficiency or malnutrition (Bryant-Waugh, 2013). Signs that indicate the need for hospitalization for medical stabilization include severe malnutrition, bradycardia, hypotension, hypothermia, orthostatic changes in heart rate or blood pressure, or acute food refusal (American Academy of Pediatrics, 2003; Peebles et al., 2010).
How is ARFID Treated?
Like other eating disorders, ARFID has potentially serious medical consequences and early intervention is important. When a child experiences weight loss or failure to maintain expected growth rate, it is important to consult with a medical professional to rule out any medical issues that may be causing the weight loss. This is especially true for children with gastrointestinal complaints accompanied with significant weight loss. Once possible medical explanations for the weight loss/failure to maintain expected growth are ruled out, early referral to providers who specialize in the treatment of eating disorders is recommended. Treatment of ARFID typically involves a multidisciplinary team including a mental health professional who specializes in eating disorders, a physician, and often a dietitian. Children with significant weight loss should be closely monitored for nutritional deficiencies, electrolyte imbalances, cardiac sequelae, and orthostasis throughout treatment. Some may initially require nutritional rehabilitation in a hospital or intensive treatment program.
Since this is a new diagnosis, few treatment studies have been conducted on the treatment of ARFID specifically. Fortunately, early case reports (Bryant-Waugh, 2013; King, Urbach, & Steward, 2015; Norris, Spettigue, & Katzman, 2016) and a recent pilot study (Sharp et al., 2016) have demonstrated effectiveness in treating ARFID. It also is important to remember that clinicians have been treating patients with ARFID for years, even though it was called EDNOS. Thus, there is a much larger research base on the treatment of feeding/eating issues that treatment providers can utilize when developing a treatment plan for a patient with ARFID. These include but are not limited to family-based treatment for AN (the Maudsley approach), cognitive behavioral therapy for anxiety symptoms, and behavioral treatment for feeding issues. Now that the diagnostic criteria for ARFID has been laid out, researchers can focus on tailoring existing treatment techniques to this population as well as developing novel treatments specifically for patients with ARFID.
One factor that appears to be key is matching the type of treatment to the presenting features. An essential first step is accurately identifying the reasons for poor nutritional intake. For example, a patient who is primarily not eating due to fears of choking would likely benefit from methods that have proven to be effective in the treatment of anxiety/phobias (e.g., cognitive behavioral therapy). For patients who present with sensory issues related to eating, behavioral techniques may be beneficial. A child with significant anxiety about gastrointestinal pain or vomiting after eating may benefit from the family-based therapy approach of parents taking responsibility for weight restoration coupled with individual therapy focused on anxiety management.
With the addition of ARFID to the DSM-5, this subset of patients with significant eating disturbance who lack concern about weight or body shape has been formally recognized. However, symptom presentations within this category are broad and range from children with a long history of selective eating to acute food refusal due to a traumatic incident involving food or vomiting. Parents and physicians should be vigilant for changes in weight or eating habits as well as chronic low weight/lack of growth and selective eating. Treatment should include medical evaluation for nutritional deficiency and malnutrition and close follow-up by a multidisciplinary team. It also is important to match the treatment to the reason for the eating disturbance. With proper evaluation and follow-up, the prognosis for patients with ARFID improves.
Mary is a 35 year old woman who is of normal weight. She frequently diets, going through bouts of restricting calories for a few days, and then binges on her “forbidden foods.” Mary constantly worries about food and calories, even when she is busy doing things she likes, like being in the company of friends or reading a book. Mary is worried she may have an eating disorder, so she tries to find more information online about what her diagnosis might be. She quickly realizes she does not meet criteria for anorexia nervosa (AN), bulimia nervosa (BN), or binge eating disorder (BED), which are the only eating disorders Mary has ever heard of. Mary feels confused and disheartened.
Does Mary’s experience sound familiar to you? If it does, you are not alone. Actually, Mary very likely does meet criteria for an eating disorder – OSFED. Other Specified Feeding or Eating Disorder (OSFED) is more common than the other, more commonly known eating disorder diagnoses, like AN, BN, or BED. In fact, in our outpatient eating disorders clinic in Boston, OSFED makes up about 25% of all diagnoses. Clinicians and researchers used to think of OSFED as a kind of subthreshold eating disorder (ED), but in fact research shows that individuals with OSFED have similar levels of impairment and share similar genetic risk factors to individuals with full threshold EDs (Fairweather-Schmidt & Wade, 2014). Our clinic frequently receives calls on our intake phone line from people of all ages, races, and genders who seek an evaluation, but who qualify their symptoms by saying “I am not underweight so I don’t know if I really have an eating disorder” or “I don’t binge every single day, so I’m not sure if this is really the right place for me.”
AN and BN are extreme examples of eating disorders, but are relatively rare, with lifetime prevalence rates at only around 1.7% and 0.8% respectively (Smink et al. 2014). Due to the media attention these disorders receive, some people with clinically significant eating problems (but who don’t meet criteria for AN or BN) may not realize that their symptoms, too, have a name. The often impairing and distressing symptoms that these individuals are experiencing are well deserving of clinical attention and we are always glad they called us for help.
Luckily, the newest (5th) edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) included an improved classification, featuring broader diagnostic criteria, for diagnosing eating disorders. For example, many individuals who normally would not have met criteria for AN or BN in the 4th edition (DSM-IV) would now receive such a diagnosis in DSM-5 (Quick et al. 2014). DSM-5 also improved on the criteria for OSFED. Where DSM-IV labeled eating disorders that did not fit into any category as eating disorders as “Eating Disorder Not Otherwise Specified (EDNOS)”, DSM-5 replaced this category with OSFED.
OSFED includes five specific example presentations. Atypical anorexia nervosa (OSFED-AA) is a type of OSFED that encompasses individuals who have a fear of weight gain and body image disturbance, but who are not underweight. OSFED – Purging disorder describes individuals who engage in purging but do not engage in bingeing, while OSFED – Night eating syndrome is likely appropriate for an individual who wakes up, after already having fallen asleep, and consumes a large amount of food. Two OSFED categories capture the symptoms of individuals who are both bingeing and purging (OSFED-BN) or just bingeing (OSFED-BED). But perhaps binge frequency isn’t as important in determining impairment; one study found that feeling a loss of control while eating, rather than binge frequency and size, is a better predictor of clinically significant binge eating (Vannucci et al. 2013).
Some individuals may be experiencing distressing eating symptoms or attitudes, but still might not fall into any of these categories. For these individuals, a diagnosis of OSFED-Other can be assigned. A 2014 study found that, among patients presenting for outpatient eating disorder treatment, two thirds would have been diagnosed with EDNOS in DSM-IV, whereas just over 1% had a diagnosis of Unspecified Feeding or Eating Disorder (UFED) in DSM-5, which is to be used when not enough information can be obtained in order to assign a more specific diagnosis. In our clinic, both OSFED-Other and UFED are becoming more rare, given the multiple broad examples of symptom presentations offered in the OSFED category.
So, overall, DSM-5 succeeded in adding specificity to various symptom pictures. Some medical professionals argue that OSFED categories may unnecessarily pathologize symptoms, like negative body image or dieting, that many individuals may experience to some degree over the course of their life. However, most patients are relieved when a clinician can assign a diagnosis to the suffering they are experiencing; it is often validating for an individual’s suffering to be recognized and named. Further, from a clinical standpoint, treatment can be formulated to address only the symptoms the patient is currently experiencing, rather than a “one size fits all” model.
A 2013 longitudinal study found that individuals with OSFED-BN and OSFED-BED eventually developed BN or BED over the course of the 8-year follow-up (Stice et al. 2013). Therefore, not only are these OSFED categories useful for patients, they may help clinicians identify who might be at risk for developing another eating disorder diagnosis later on.
The good news is that individuals with OSFED can benefit greatly from treatment. A popular evidence-based treatment for eating disorders is enhanced cognitive behavioral therapy (CBT-E; Fairburn 2008), which has been shown to alleviate symptoms in individuals with OSFED-BN as well (Waller et al. 2014). Researchers are also working on other ways to disseminate treatment to individuals who have OSFED. For instance, a randomized controlled trial of an Internet-based intervention showed that, among individuals with OSFED, both eating disorder attitudes and behaviors (like bingeing and purging) were significantly reduced (Jacobi et al. 2011) compared to the control group.
If you would like to learn more about OSFED, Almost Anorexic: Is My (Or My Loved One’s) Relationship with Food a Problem? is a helpful, reader-friendly guide written by Dr. Jennifer J. Thomas, the co-director of the Eating Disorders Clinical and Research Program at Massachusetts General Hospital. In sum, if you think you might have OSFED, please don’t hesitate to seek treatment. Your experiences and symptoms have a name and are valid and worthy of attention and because they are treatable. Instead, you could follow Mary’s example: she went to see a psychologist and was diagnosed with OSFED. He recommended she enroll in weekly sessions of CBT-E, after which Mary saw significant improvement in her binge frequency and her attitudes about food and eating in general.