On May 14th, I attended the 21st annual two-day conference held by the Multi-Service Eating Disorders Association (MEDA). This year’s conference theme was “Thinking Outside the Body: Empowering Yourself, Your Clients and the Community.” I was only able to go to day two of the conference, but I feel like I learned a lot during that one day of presentations and thought it would be helpful to summarize some of what I learned.
The first talk I attended was the day’s keynote address, “Gender Identity, Gender Expression, and Eating Disorders,” presented by Carly Guss, MD, Allegra Gordon, MPH, ScD, and Jerel Calzo, PhD. Obviously, the topic of gender identity has been on the forefront of many people’s minds given the latest legislation around transgender individuals being able to use public restrooms. While I am familiar with transgender issues, I have only worked with one transgender individual in my practice, so I was very interested in hearing what the presenters had to say on the matter.
While the presenters gave a helpful primer on gender identity, their main focus was on the prevalence of eating disorders (EDs) in the transgender community. According to the presenters, two recent studies found that compared to cisgender heterosexual women, transgender men and women have 4.6x odds of past-year self-reported ED, were more than twice as likely to have used diet pills and purging in the past month, had 4.8x risk of being “underweight,” and had 2.5x risk of being “obese”. Two other studies on ED risk in the transgender community found that the majority of participants (transgender men and women) reported a history of disordered eating and that there was a “strive for thinness” to suppress unwanted secondary sex characteristics, particularly in people who were gender assigned “female” at birth but identified as males. It makes a lot of sense if you think about it – if one were to identify as a male but were born female, that person might want to prevent the development of curves and beginning of menstruation that naturally occur as a girl becomes a woman. Restriction and maintaining a very low body weight can prevent these developments from occurring.
My takeaway from this talk was that it is important for practitioners to be aware of the challenges that transgender individuals face in our society (particularly in healthcare) and their increased risks for EDs and body-image issues. It also made me examine my own practices when working with transgender clients, including how to make them feel most comfortable (e.g., using the client’s preferred pronoun[s] and having gender-inclusive language on our patient forms) and incorporating the best strategies to help them recover from their EDs.
The second talk I attended was “What You Need to Know about Trauma and PTSD: A Personal and Professional Perspective for Working with Eating Disorders.” The first presenter was Jenni Schaefer, a very well-known figure in the ED community. Ms. Schaefer is a self-described individual who has fully recovered from an ED and has written a number of books on her recovery journey. What I (and perhaps many others in the audience) was not aware of was that Ms. Schaefer is also a survivor of trauma. Her presentation was quite an eye-opener as it described how her trauma and ensuing Post Traumatic Stress Disorder (PTSD) were impacted by and complicated by her ED. This part of the presentation was especially illuminating for me, as I have a number of patients who have been victims of trauma and struggle with both PTSD and EDs. The second presenter was Luana Marques, PhD, and she discussed the different therapeutic options for patients struggling with both disorders. While the content was not exactly geared towards registered dietitians, it gave me some insight into how PTSD can affect recovery from ED and vice versa.
After an hour lunch break, I was thoroughly excited for the third talk of the day. As many of you know, Jonah and I identify as Health at Every Size® (HAES) practitioners and are supportive of the size acceptance movement. Well, we were absolutely thrilled to learn that Ragen Chastain (blogger at Dances with Fat), a world-renowned , self-described fat activist and proponent of “behavior-centered health,” was going to be presenting on both HAES and Size Acceptance in her talk entitled “The World is Messed Up, You are Fine – Helping Clients Deal with the Culture of Body Shame.”
Ragen gave an absolutely electrifying talk about how our society gives extremely damaging messages about our bodies via the medical community, the media, and even our politicians (e.g., Michelle Obama’s fight on childhood “obesity”), and how these messages can make recovery from an ED very difficult. She started the presentation by giving a quick primer on the principles of HAES and Size Acceptance, stressing the point that people of all body sizes have the right to exist and that healthy habits are more likely than body size to determine healthy outcomes.
After this introduction, Ragen displayed a number of images taken from popular magazines and websites, each showing how the media tries to manipulate celebrities’ appearances by using Photoshop. All of these manipulations aimed to make the subjects appear thinner and younger, perpetuating the idea that everyone (especially women and girls) are only beautiful if they are young and slender. A number of years ago, I never would have thought about how these images are manipulated, but now in my work with ED clients, I am super sensitive to how these images can be extremely damaging to girls and women, and I often suggest to my clients that they avoid certain magazines and publications for fear of triggering negative body image thoughts.
Ragen continued on to talk about the role of HAES in ED recovery and how important it is for ED healthcare providers to give consistent body positive messages that counteract the negative, fat-phobic messages that our patients receive every day. She gave examples of how practitioners could create a safe environment for their ED patients, such as providing a space that includes positive representations of diverse body sizes, creating “body affirming” spaces by having chairs that can accommodate people of all sizes, and being aware of our own beliefs and assumptions around weight and size.
While I was familiar with nearly everything Ragen discussed, for I am an avid reader of her blog, it was interesting to observe those in the audience who were hearing this information for the first time. There were a number of thought-provoking questions that were posed during the Q and A section at the end, and Ragen adeptly answered all of these queries with the grace and presence of someone who is confident as well as extremely knowledgeable about the topic on which she was presenting. Her talk finished with a standing ovation from the audience, something that I have rarely witnessed at any of the MEDA conference presentations I have attended. It was truly a special moment.
The presentation that followed Ragen’s was called “Taking the ‘Th’ Out of #Thinspiration – Utilizing Social Media to Encourage, Empower and Bring Hope to Those Battling or In Recovery from Eating Disorders”. The first half of the talk was presented by Donald Blackwell, a man whose own daughter had suffered from an ED and who himself became very active in ED recovery. Mr. Blackwell’s part of the presentation centered on the many different social media platforms that people use today. While I am already quite familiar with Facebook, it was helpful to learn more about the other commonly used social media vehicles, including Twitter, Tumblr, and Instagram, and how they are used in pro-ED (people who believe that EDs are “lifestyle choices”, not illnesses) as well as ED-recovery circles. I have always been aware of the numerous pro-ana (promoting anorexia nervosa [AN]) and pro-mia (promoting bulimia nervosa [BN]) websites out there, but this talk gave me an even clearer picture of the amount of harmful information that circulates on the internet.
The second part of the presentation was given by Joanna Kay Mercuri, an ED sufferer who is now in recovery. She went into even more detail about the pro-ED websites and their content as well as the pro-recovery websites and what they focus on. Ms. Mercuri also discussed her own blogging and how it helped her in her recovery, as it gave her a platform to discuss her feelings and struggles while connecting with others. The end of the talk centered on how we as a society can actually respond to the pro-ED social media and bring the pro-recovery content front and center. All in all, this talk was helpful in showing the influence and use of social media platforms regarding EDs, and it gave me a lot of insight into what my patients might be seeing online possibly every day.
The conference’s endnote address, “Overview of ARFID: Avoidant/Restrictive Food Intake Disorder,” was given by Ovidio Bermudez, MD. It was very interesting to learn about this relatively newly recognized group of disorders as it has recently been added to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). ARFID is defined by the Center for Eating Disorders as an “eating or feeding disturbance as manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one (or more) of the following:
- Significant weight loss (or failure to achieve expected weight gain or faltering growth in children).
- Significant nutritional deficiency.
- Dependence on enteral feeding or oral nutritional supplements.
- Marked interference with psychosocial functioning.”
Those struggling with ARFID are not the same as those with AN or BN, as ARFID sufferers typically have no fear of weight gain and no body image distortion. Instead, individuals with ARFID are those who, due to a problem with eating, aren’t able to take in enough nutrition through their diet. Some examples of eating problems are difficulty with digestion of certain foods; strong aversions to colors, textures or smells; no appetite; or being afraid to eat as a result of a frightening episode of choking or vomiting. Sometimes individuals with ARFID can develop BN, AN, or other EDs, but not in every circumstance. I myself have worked over the past few years with several clients who have struggled with ARFID, so I found this talk most helpful in recognizing the signs and symptoms, treatment plans, and prognosis.
All in all, I found my day at the MEDA conference one filled with interesting ideas, helpful tips, and above all, support from my fellow colleagues. These types of conferences are not only a wonderful opportunity to reconnect with familiar ED treatment practitioners, but they are also a terrific time to meet the “new kids on the block.” I look forward to returning to the MEDA conference next year, for I am sure I will learn even more!
ARFID: I knew a young woman who was quite thin while she was in college (in the 90s), but she didn’t want to be. She would barely eat at meals, and eventually confided that she’d been diagnosed with “true anorexia.” I wonder if it was ARFID. She wasn’t not eating because of body image issues. She just didn’t like the taste and textures of most foods. She’d force herself to eat so she got something in her, but couldn’t stand very much.
Treatment for her was slow but eventually successful. IIRC it took about 10 yrs. Part of it was her learning how to cook, and learning what foods she liked more than others, and then slowly working out from there. Today she’s at a healthy weight and eats a much wider variety of foods, happily.
Social Media: There is a LOT of pro-ED stuff on Reddit. Some of it is blatant, such as sub (forum) actually called Pro-ED, but some is far more subtle.
I wrote up a long rant about some of the stuff I’ve seen there, but then decided it was too much of a rant to subject you to. I’ll just say that being a size-positive person, let alone a supporter of HAES, on that site is like dancing naked on the highway with a chainsaw in each hand.
It won’t stop me, though.
So sorry for my slow reply, and thank you as always for commenting. You deserve a lot of credit for your action on Reddit. Not an easy place to be, for sure.