Eating disorders (ED) are mental health issues that affect all different people, no matter what race, gender, sexual orientation and body size. As we learn more, the old stereotype of who struggle with eating disorders is changing, and thankfully so. The idea that only thin white women have eating disorders has prevented many people with other identities from being diagnosed and getting treatment, leading to countless numbers of people without any resources. One area where we see this most is in the diagnosis of anorexia for those on larger bodies. “Atypical anorexia” is the term healthcare providers use to describe someone who might not fit the stereotypical low weight criteria, struggle with restriction that leads to malnutrition and weight suppression. This illness is often missed, because of pervasive weight stigma and fatphobia. Those in larger bodies who struggle with anorexia often spend years suffering before accessing treatment, and once they do, they find that their eating disorder is often not fully addressed.
Both treatment centers and the community need to learn more about atypical anorexia. To help shed light on this important topic, I interviewed Erin Harrop. They are a recent PhD graduate who has dedicated their time to researching atypical anorexia. Here are their expert insights into this eating disorder and what clinicians can do to provide more effective treatment for those struggling with atypical anorexia.
AF: How would you define atypical anorexia?
EH: Honestly, I would define atypical anorexia nervosa (AAN) as plain, regular old anorexia. But we call it by a different name. It is an ED that involves cognitive eating disorder distortions, behaviors of restriction (and possibly bingeing and/or purging, as well, just like regular anorexia), in addition to physical consequences. People with AAN restrict their intake and much of this restriction is motivated by “fearing fat” or “fearing weight gain,” partnered with what we call “overvaluation of weight and shape,” which is to say that people with AAN (or AN) feel as if the shape and weight of their body plays a critical key in their self-concept and their worth and value as a person. They also don’t tend to see their bodies accurately.
With how much disordered eating and ED thoughts are normalized in modern Western culture, it can be hard to know what exactly is “abnormal” about these fat-fearing thoughts. For me, I think part of it comes down to how much the ED is talking versus the actual person. How much is food, body image, restricting, compensating, etc., getting in the way of your life? How much time do you spend thinking about it? How much energy does it take to make decisions about food? How much pain or discomfort does it cause? When those things get out of balance, and when food, exercise and body image start to take up more of your life than is life-giving—that’s one of the things that signals a problem. Personally, I’m not a big fan of putting all the eating disorders into tiny categories (like anorexia, atypical anorexia, bulimia, binge eating disorder, etc.). I don’t think it makes a lot of sense, and I think it allows weight stigma to “drive the diagnosis.” Most eating disorders involve some combination of restriction and body image disturbance, and if eating disorders go on long enough, they often involve exercise, bingeing and/or purging. Personally, [I] wish we thought more “transdiagnostically” about the similarities between eating disorders rather than focusing on the differences. The differences create a hierarchy, and that hierarchy manifests in bias and inequitable treatment.
AF: The name might be confusing for some. What is problematic with referring to this presentation of anorexia as “atypical”?
EH: Whenever we refer to anything as “atypical” we are “othering” in some way, saying that something is different from the norm or an “abnormal presentation.” There is also the unstated implication that something that is atypical is somehow less important, or less necessary. I find both of those things problematic. Atypical anorexia is a dangerous, life-threatening eating disorder. People need treatment for it.
Additionally, generally in prevalence studies of eating disorders, atypical anorexia tends to be reported at higher rates than typical anorexia—so this is problematic, as well, because it might be that for those presenting with symptoms of anorexia, it’s more common to be atypical than typical.
AF: Do folx who have atypical anorexia receive different treatment than those with a more traditional presentation of anorexia?
EH: I would preface this all by saying that I haven’t done a formal study to compare a random sample of patients with atypical anorexia to patients with typical anorexia, so when I’m answering this question, I’m answering based on the stories I’ve heard from patients in my qualitative research. So, now that I have my researcher’s disclaimer out of the way… From what I have learned from patients who tell me their stories of treatment, I would say, “Yes, absolutely, yes. They do get different treatment.” I would also say that based on my own experience with treatment as a person who has a history of both typical anorexia and atypical anorexia.
Some of the differences that I have heard about have included:
- Shorter treatment stays
- Less attempts to restore weight that has been lost in the ED than with lower weight folks (e.g., not putting patients on weight restoration plans)
- Less medical monitoring (not receiving medical tests like EKGs and DEXA scans or checking orthostatic hypotension)
- Being encouraged to start exercise sooner in the treatment process
- Being told that “more weight loss is possible (or likely)” in recovery
- Lower meal plans (not being “allowed” to eat some foods that other patients are encouraged to eat)
I think in general folks have reported feeling like their providers do not take them as seriously, or that their providers may doubt that they have an ED or doubt how severe it may be. Whereas thinner folks with anorexia are told, “You don’t realize how little you are eating, you really need to eat more to get better. Food is medicine,” larger folks with anorexia are told, “You probably don’t realize how much you are actually eating. You are probably underestimating your calories. Let’s go back through and count what you think you’ve eaten again and see where things are off.”
I think another big difference is that many of the folks with atypical anorexia aren’t getting any treatment at all. I spoke with many folks whose providers never asked them about their eating disorders, even when they had all of the classic “red flags” of an eating disorder—rapid weight loss, food obsession, compulsive exercise, hours spent on eating, poor body image, fainting, losing a period, headaches, etc. But providers didn’t ask about an ED—or they congratulated them on their weight loss [instead]. So, while small bodies in ED treatment are getting more affirming treatment than people in medium bodies, large bodies are often not getting any treatment at all. There was one participant in my study who was diagnosed with binge eating disorder (BED) during the period when she was eating the least amount of food she had ever experienced in her life. She actually qualified for atypical anorexia at that time, but her medical providers interpreted it as binge eating disorder. She wasn’t bingeing at the time, but she was fat, and she was starving.
So … providers make assumptions—and I say this as a provider myself. As healthcare providers, we don’t ask all the questions, we make assumptions and our biases fill in the blanks. For example, if someone with an ED tells me they binged because they ate a “whole can of Pringles,” I have to follow that up with some questions: How big of a can? (Perhaps it was a single-serving can.) How quickly did you eat them? (Perhaps it was eaten over the course of a day.) What were the circumstances? (The setting, mood and hunger level all matter.) Did you feel out of control? (People can choose to eat however many Pringles they want to! And we can feel out of control when hunger levels are high due to restriction.) Did this Pringle-eating cause you distress? Because that’s what I ultimately care about as a provider—how much distress are you experiencing because of food (what you eat and what you don’t) and body image. But all too often, we look at a person’s size and our mind automatically fill in the blanks… If we don’t ask the questions, we just won’t know.
AF: What recommendations do you suggest that will help folx in larger bodies get their more appropriate treatment and not let body size influence eating disorder diagnosis?
EH: This is a hard one, because ultimately, I don’t think it’s the job of the patient to ensure that their provider is giving them good, ethical, effective care. As patients, we are supposed to expect that our care will be ethical, effective and in our best interests as a default for medical care. And as providers, we are supposed to be competent in our fields, aware, diligent about our implicit biases, and educated about evidence-based interventions for the people we treat. However, that’s just not the reality. Weight stigma is rampant in our medical system, in insurance companies and in the eating disorders field, so unfortunately, folks with larger bodies don’t get good care as a default. In my experience, neutral care is sometimes the best that patients hope for, which is a sad comment on the state of the field. That said, here are some ideas that may help people get better care:
- Look for providers who practice Health at Every Size® (HAES®) orweight-inclusive care, and who also specialize in treating eating disorders. I also look for physicians who say they take a “patient-centered” approach or who are open to discussing “what health means to each patient.” Sometimes those words signal a provider who is willing to be flexible in their approach.
- Have a conversation with your providers at the beginning of treatment about the importance of receiving weight-inclusive care, your desire not to discuss weight loss, your desire not to be weighed,to focus on holistic health outcomes, to focus on your mental health,etc.
- Be honest about your eating disorder history. You may have to be more forthcoming and assertive about your disordered behaviors and thoughts than you want to be. Maybe your ED usually likes to hide in the background,and maybe your ED takes advantage of this and uses the fact that it’s “invisible” to providers as a way of getting worse. Tell your providers how much time you spend thinking about food/body image andyour eating disorder. Tell them about the behaviors you are doing (restricting, counting calories, compulsive exercise, etc.). Tell them your level of distress about it (especially if you are having thoughts of suicide, self-harm, or are also abusing substances). You might have to remind providers over and over about your ED and about how negatively it has impacted you—you might have to be a broken record. You might have to give them more details than you want to in order to make sure they aren’t “filling in the blanks” with their assumptions.
- If you have one good provider, see if they will help mentor another provider to get them up to speed. For instance, if you have a HAES dietitian, request that they talk to your doctor ahead of time to educate your medical provider. You may have to pay a bit initially for the consultation time, but it can be worth it to have a better experience when you go to the doctor.
- Don’t fall into the “I’m not sick enough” trap any more than you already have. Also, don’t fall into the “I can’t even do an eating disorder right” trap. Both of those phrases are the eating disorder talking. People of ALL sizes with eating disorders say those exact words. You are sick enough already. You are sick enough to get help.
- Expect to gain weight. No matter what providers say about your weight, or how much they expect you to gain in recovery, remember that your body really does know best. It has an inner wisdom, and it won’t be satisfied if you are undernourished and under-restored. Our bodies heal when we weight-restore. That’s a very scary thing to many people—it’s even scarier for folks who recover into bodies that are stigmatized by society as opposed to praised. And, that physical recovery work is still necessary for freedom from the ED. Recovery is not about weight loss or an ideal body weight. It is about your body nourishing and healing and taking whatever form it does.
- Celebrate your firsts in recovery. Celebrate your first sandwich with mayo, your first double scoop of ice cream from Baskin Robbins, your first meal not counting calories, your first 7 on the hunger scale, your first size that you grow out of, your first menstrual cycle, your first new lump or bump or crease or roll. These gains are hard won—and most of us don’t feel too much like celebrating, because it’s hard work, and most of us aren’t particularly happy to be doing it. But try to find ways of honoring your journey, even the deeply uncomfortable parts.
- Learn about weight stigma and how it intersects with other forms of systematic oppression, and request that your therapist do the same. Health is not how well you adjust to a disordered society—learn to see the disorder(in yourself, family, friends, coworkers, society)and call it out.
- There is not a lot of literature out there on atypical anorexia, but there is some. Here are a few that might help providers to read in order to take atypical AN more seriously. The first is an article I wrote about the treatment experiences of atypical anorexia. The second talks about some of the ways that atypical anorexia compares to anorexia in terms of psychological and medical consequences. The third article dives more into the medical consequences.
-END OF INTERVIEW-
Keeping Atypical Anorexia Top of Mind
These insights are so important in moving the conversation about atypical anorexia forward in our community. Thank you to Erin Harrop for being a valued voice for what change can look like. At Center for Discovery, we know that by doing the hard work of examining our own program from every angle that we see where we can improve when it comes to inclusivity. We are not perfect, but we are committed to doing the best we can and being open to all of these types of conversations. We see this work as necessary, and it’s just one way that we demonstrate our willingness to grow and continue to be a leader in the treatment of eating disorders. If you or someone you love is struggling with an eating disorder, Center for Discovery is here to help.
Interviewer: Aaron Flores, RDN, is Senior Weight Coordinator for Weight Inclusive Care for Center for Discovery (CFD). He has been with CFD since 2017 and has contributed to the development of the Path to Peace Program for Binge Eating Disorder as well as applying a Health at Every Size® philosophy to eating disorder treatment across all of CFD’s locations.
Interviewee: Erin Harrop, MSW, PhD, is an assistant professor at the University of Denver. Their research agenda addresses weight stigma as a social justice issue, by examining the systemic factors that impact eating disorder patients’ access to care. Erin’s dissertation involved a mixed-methods longitudinal study examining the experiences of higher-weight individuals with restrictive eating disorders. They identify as a researcher, clinician, and person with lived experience and engage in advocacy work at local and international levels.
- Harrop, E. N. (2019). Typical-atypical interactions: One patient’s experience of weight bias in an inpatient eating disorder treatment setting. Women & therapy, 42(1-2), 45-58.
- Sawyer, S. M., Whitelaw, M., Le Grange, D., Yeo, M., & Hughes, E. K. (2016). Physical and psychological morbidity in adolescents with atypical anorexia nervosa. Pediatrics, 137(4), e20154080.
- Peebles, R., Hardy, K. K., Wilson, J. L., & Lock, J. D. (2010). Are diagnostic criteria for eating disorders markers of medical severity?. Pediatrics, 125(5), e1193-e1201.
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