Nine Truths About Eating Disorders Recovery

Nine Truths About ED Recovery

Margo Maine & Beth Hartman McGilley

Beth Hartman McGilley, PhD, FAED, CEDS

The expression “flapping one’s wings” generally conjures images of a fruitless pursuit to shift positions, an ineffective effort to elicit change. The “butterfly effect,” on the other wing, so to speak, offers an alternative perspective of metamorphic potential (Lorenz, 1963). Lorenz, a meteorologist and pioneer of chaos theory, introduced the concept that nature is highly sensitive to small changes, thus small causes can have large, unpredictable effects—the flapping of a butterfly’s wings in Brazil could be a catalyst for a later tornado in Texas. What might this concept mean for our field of eating disorders (EDs), one in which some would argue we’ve been futilely “flapping our wings” (Russell-Mayhew, Stewart, & MacKenzie, 2008) as patients and their families exhort us to increase access to and affordability of care, to expand the frames of research and practice to incorporate the full diversity of those suffering, and to embrace socially just, empirically effective therapeutic approaches that reflect their etiological complexities?

At a 2014 National Institute of Mental Health (NIMH) Alliance for Research Progress meeting, Cynthia Bulik first presented what has since become known as the Academy for Eating Disorders (AED) Nine Truths About Eating Disorders (2015). Translated into 30 languages and endorsed by more than 20 international ED-related organizations, it has become a global clarion call intended to destigmatize and bust myths about EDs, thereby sensitizing and transforming general perceptions about these potentially life-limiting diseases, and intended to, via its “impact on science and practice, reduce illness burden, improve quality of life, and eliminate mortality from eating disorders” (Schaumberg et al., 2017, p. 443). The butterfly effect of Bulik’s NIMH presentation is undeniable and has inspired other experts in the ED field to apply the concept to more specific areas of interest. Margo Maine briefly presented her version of nine truths about midlife EDs at the 2018 International Association for Eating Disorder Professionals (IAEDP) annual conference (Maine, 2018), which she’s expanded upon in this publication. In like manner, this article will provide an extended version of my nine truths about ED recovery that I also presented at IAEDP (McGilley, 2018). I offer these nine truths with humble hopes that the fluttering of my concepts will similarly expand, sensitize, and destigmatize perceptions of ED recovery as considered through a holistic, inclusive, and social justice lens.

Truth #1. Getting real is real and rough and fully possible.

My nine truths begin where the AED nine truths leave off: “Full recovery from an eating disorder is possible. Early detection and intervention are important” (AED, 2015). While fully possible, the recovery process is generally lengthy, typically messy, and invariably requires—yes, what a radical notion—love! Self-love and that of our caregivers—of whom much is asked if we’re lucky enough to have their support. The wisdom of the Skin Horse in The Velveteen Rabbit (1922) poignantly captures my sentiments on recovery, what I liken to “getting real.”

“Real isn’t how you are made,” said the Skin Horse. “It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.”

“Does it hurt?” asked the Rabbit.

“Sometimes,” said the Skin Horse, for he was always truthful. “When you are Real you don’t mind being hurt.”

“Does it happen all at once, like being wound up,” he asked, “or bit by bit?”

“It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand” (Williams, 1922).

 

Recovery isn’t about how we are made, though as later noted, our genetics are a contributory factor. We may not physiologically need to feel loved and worthy for our brains and bodies to be restored to wholeness, but braving the interruption of symptoms and sustaining recovery efforts is arguably much more likely to happen in those who feel lovingly and honestly felt—those who come to trust that they belong and have a place at the table of humanity. And when this happens, down to our loose joints and when our hair has been loved back on, it can be as the Skin Horse says: “Once you are Real you can’t become unreal again. It lasts for always” (Williams, 1922).

Truth #2. A consensus definition of recovery is vital.

The research/practice gap is perhaps most gaping when it comes to what defines recovery. Nearly 10 years ago, after reviewing the literature on recovery, I concluded that 60 years of quantitative research devoted to ED outcomes had provided extensive data, while failing to provide comparable, consistent, and clinically meaningful definitions of what recovery entails (McGilley & Szablewski, 2010).

Methodological variability is the one consistent factor in ED outcome literature, generating data which suggest recovery is as possible as it is improbable [rates varied between 0 and 92 percent depending on the diagnosis, recovery criteria, and time of assessment]. Quantitatively derived definitions of recovery are limited by their inherent depiction of it as a static state: a product versus a process. Additionally, these approaches locate the source of definitive authority in the researchers, creating arbitrary and inconsistent determinants of outcome, and overlooking the nuances, voice, and perspectives of the patients and their caregivers. Finally, populations conspicuously overlooked in outcome research include children, males, [LGBTQ+,] EDNOS [eating disorder not otherwise specified], BED [binge eating disorder], late onset EDs, minorities, and primary caregivers (McGilley & Szablewski, 2010, p. 206). 

Qualitative research capitalizes on the lived experience of those with EDs, inherently capturing the nuances, similarities, and variability in clients whose “data” might otherwise get literally factored out—or, more critically, never factored in. In a recent review and meta-analysis of 18 qualitative studies, the researchers found that “in addition to the remission of eating disorder pathology, dimensions of psychological well-being and self-adaptability/resilience were found to be fundamental criteria for recovery” (de Vos et al., 2017, p. 1). More specifically, the essential criteria recovered clients indicated were: self-acceptance, positive relationships, personal growth, decrease in ED behavior/cognitions, self-adaptability/resilience and autonomy (de Vos et al., 2017, p. 1). Clearly, physical and psychological variables must both be addressed to properly and holistically assess the recovery status of a client, and studies should be of sufficient duration to capture the inherently erratic nature of this process.

Attia, Marcus, Walsh, and Guarda (2017) made a recent plea to the field to reach consensus on outcome measures for treatment programs. “Given the morbidity and mortality associated with eating disorders, and the expense of treatment, there is a compelling need for the field to adopt a common framework for assessing outcomes. As a start, academic and nonacademic programs are encouraged to collect and make available data using a short list of clinical indicators measured on admission and discharge” (Attia et al., 2017, p. 3). Bardone-Cone and colleagues are to be commended for their concerted efforts to derive and test a promising consensus definition that applied to those with anorexia nervosa (AN), bulimia nervosa (BN), and EDNOS (Bardone-Cone et al., 2010). Khalsa and colleagues reviewed 27 studies of AN only, assessing definitions of relapse, remission, and recovery (2017). Their main finding “is that there are almost as many definitions of relapse, remission, and recovery as there are studies of them” (p. 6). They offer alternative consensus definitions of relapse, remission, and recovery, which include objective and subjective measures, standardized ratings, and specific durations of follow-up (one, three, six, and 12 months) and which are “conducive to utilization across both clinical and research settings” (p. 8). Further research will be needed to test and validate their recommendations. Last, critically missing from both groups’ proposed definitions is an assessment of patients’ engagement in compulsive exercise (another term in search of a consensus definition), which is known to be both prevalent and predictive of poorer outcomes (Rizk et al., 2015). If we build this, there will come a time when we can better and more successfully tailor treatment to the specific needs of individuals and their families.

Truth #3. Recover: y, ing, ed? True trichotomies? 

By lacking consensus on what constitutes recovery from an ED, the terms we use to describe it are haphazardly and interchangeably utilized, despite meaning to convey critically different aspects of the healing experience. Each of these terms is relevant and essential, and I would suggest we embrace them all, albeit with more clarity! Recovery is a noun, and its second definition best describes how I view its relevance in this context: the process of regaining possession or control of something stolen or lost (Pocket Oxford Dictionary, n.d.). Indeed, the experience of developing an ED can very much feel as if one’s mind and body were hijacked, and recovery entails recapturing our essential nature, our ousia. Recovering is the action involved in this process and can be used to describe any point along that path. Recovered is perhaps the most loaded and controversial of terms and is used to emphasize the viewpoint that one can fully recover from an ED—at least from the physical symptoms of the disease. I have no empirical data to support my position, but I offer this perspective, which matches my personal and professional experience. One can be fully recovered from an ED AND always recovering with the psychosocial, familial, and spiritual issues we all share as humans. Similarly, we may be fully recovered symptomatically from an ED AND still recovering from a substance abuse, anxiety, depressive, or other disorder that may be more recurrent in nature.

Truth #4. Recovery is a biopsychosociospiritual process.

This truth expands upon the 7th and 8th Truths from the AED (2015) in which it’s noted that a gene/environment interaction is at root in the etiology of EDs, but that genes alone don’t predict who’ll develop an ED. In nearly 35 years of witnessing others recover, and following the qualitative literature, I am impressed with the common experience, with the sometimes exception of children, that becoming recovered involves a shift to, attachment to, or identification with a power greater than oneself, a sense of belonging to the world, a search for meaning, a feeling of aliveness. Sourcing this element of recovery is unlikely to be curative in and of itself, but it’s a dimension of recovery that is too often overlooked. Even in the absence of dealing with disease, we live in a world that is overwhelmingly demanding and under-soulfully sourced. Few in the field have spoken or written as movingly or devotedly on this topic as Michael Berrett (Richards, Hardman, & Berrett, 2007), and this is an area that requires more attention at both the empirical and intervention levels.

Truth #5. There’s a diversity deficiency in our understanding of recovery.

This truth is a topic deserving of its own article, and one that is finally gaining recognition at proper levels within the field of EDs. Truth #5 of the AED echoes this sentiment: EDs affect people of all genders, ages, races, ethnicities, body shapes and weights, sexual orientations, and socioeconomic statuses (AED, 2015). The National Eating Disorders Association (NEDA) has a campaign entitled “The Marginalized Voices Project,” which is devoted to illuminating the experiences of those who’ve been overlooked in the research and treatment of EDs—on both sides of the couch (NEDA, n.d.). In a blog post on how the lack of inclusiveness within both the patient and professional populations dangerously collides, adding further barriers to under-identified patients already lacking culturally competent specialized care, Norman Kim (2017) speaks eloquently to the issue:

On top of the serious impact that eating disorders have on all those affected, people from ethnic minority groups and from the LGBTQ community must often grapple with long histories of additional stigma and marginalization, resulting in multiple doses of shame and understandable reasons for experiencing self-hatred. Experiences of microaggressions, discrimination and marginalization, and the other stressors associated with minority status put people from these communities at particularly high risk for the development of disordered eating behaviors and their attendant consequences…These disparities reflect a profound need for clinicians from marginalized communities, and culturally competent assessment and treatment services for members of marginalized communities who are struggling with eating disorders…When treatment providers do not reflect the overall diversity of their clients, this lack of diversity can be a significant barrier to engagement in treatment (Kim, 2017).

Similarly, issues of weight stigma, oppression, and internalized bias within the field remain areas of primary concern but insufficient attention (Alberga, Russell-Mayhew, von Ranson, & McLaren, 2016). The “war on obesity” is still waged without due ethical regard for those inhumanely targeted, and the medical and psychiatric communities have yet to adequately address their complicit role in the marginalizing of those with EDs of higher weights (Alberga et al., 2016; Puhl, Latner, King, & Luedicke, 2014). Readers interested in learning more about the intersecting issues related to marginalized communities, weight stigma, and EDs are referred to the following organizations or websites: NEDA, Academy for Eating Disorders, Trans Folx Fighting Eating Disorders, Nalgona Positivity Pride, Binge Eating Disorder Association, Health At Every Size, Association for Size Diversity and Health, and National Association for Males with Eating Disorders.

Truth #6. Recovery is a lengthy labor. Keep the porch light on!

In one of very few long-term outcome studies assessing follow-up beyond 10 years, empirical evidence supported what long-term providers of EDs have long known—like the Velveteen Rabbit getting real, time to full recovery, especially from AN, can be protracted. Using a fairly rigorous definition of recovery that included both physical and psychological dimensions, assessing patients with AN and BN at 9, 20, and 25 years posttreatment, Eddy and colleagues (2016) found that two-thirds of both groups were recovered by the 22-year mark. It’s important to note that patients with BN met recovery criteria sooner; at nine years, 68 percent of those with BN, compared with only 31 percent of those with AN, were recovered. Half of those with AN who hadn’t recovered at nine years went on to fully recover by 22 years. This protracted but successful recovery process for the majority of patients argues against a palliative care approach for most of our patients.

To be as honest as the Skin Horse, our field has yet to discern which therapeutic path will lead to the most effective and timely outcome for which patient. Some get well with extensive, expert, multidisciplinary care. Some families successfully heal their own with minimal professional involvement. Some never have access to expert care or family support and still manage to get well. And some have all available supports and resources and still tragically die. Recovery for those already literally fainthearted requires wholehearted expertise on the part of their healers. We must be timely and tireless, inclusive and greedy in our efforts to reach all those at risk, and patient and persistent as we collaborate in their care. Keep the porch light on!

Truth #7. Recovered professionals are uniquitous and accountable.

Research consistently reveals that 20 percent to 30 percent of ED providers have lived experience (Williams & Haverkamp, 2015). As with the definition of recovery, we lack consensus on how to define if and when a professional is “recovered enough” to work in the field, in what capacity (e.g., as a researcher or clinician), and under what kind of, if any, specialized supervision. The reality is that the stigma against having lived experience is alive and well, depending on the academic or practice setting in which one is employed. It’s thus fair to say that many recovered or recovering professionals rightly don’t feel safe to self-identify and are missing out on potentially vital opportunities to inform the field on the ifs and whens of practicing, as well as the chance to receive added resources that might ensure their success and resilience in a field that consumes abundant energy from the sturdiest of therapeutic providers.

As a logophile, I seek words intended to capture attention. Uniquitous is a cross between being unique and ubiquitous —an apt term for those of us who are recovered professionals (Urban Dictionary, n.d.). While research suggests patients find added comfort and hope in their recovered providers (Warren, Schafer, Crowley, & Olivardia, 2013), there are significant risks to both the patient and provider if the professional is not sufficiently recovered to manage the countertransference and other demands inherent to working with this population (Jacobs et al., 2010). The Skin Horse’s reference to why becoming real “doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept” seems to best describe what’s required for recovered professionals to thrive in this field. Or as only Rumi could state it: If you are here unfaithfully, you’re causing great damage (The Threshold Society, n.d.). If unsure, supervision, supervision, supervision!

Truth #8. Eating disorder treatment and recovery are acts of social justice.

A concerted effort is burgeoning in the field, imploring us at the highest levels to wake up to the social justice issues that have an impact on our actions in all our roles as ED professionals. Feminist and sociocultural perspectives on EDs first enlivened the field to the political and socioeconomic factors at play in the development of EDs (Fallon, Katzman, & Wooley, 1994; Maine, 2000), but expanding the frame to consider EDs as social justice issues in the scientific literature is relatively new (Nutter, Russell-Mayhew, Arthur, & Ellard, 2018; Russell-Mayhew, Stewart, & MacKenzie, 2008). At the organizational level, critical contributions are now being made, such as the newly named Weight Stigma and Social Justice AED Special Interest Group. I recently learned the term “socially just science” from my mentor, Chevese Turner, founder of the Binge Eating Disorder Association, and a champion of the clarion call for socially just practices and perspectives in our field. She defined this as one that “challenges researchers to be more inclusive and equitable in their pursuit of science by examining privilege around who benefits, who’s harmed, and who’s vulnerable” (Turner, n.d.). Research informed by social justice is by necessity collaborative, interprofessional, multiculturally sensitive, relevant, and action-oriented (Russell-Mayhew, Stewart, & MacKenzie, 2008, p. 144). It is our patients who’ll benefit most from our recognition of how our various privileges inform, interact, and intersect with the roles in which we serve—and that is our highest calling. At the therapeutic level, Carmen Cool states it simply: “The goal of therapy should never be to adjust to oppression” (Cool, n.d.).

Truth #9. “Recovery” is a misnomer: seeking the ipseitious self.

Regardless of what term we use to define it, getting well from an ED requires us to embody our voice differently—to literally give language to that which our bodies have otherwise been screaming to convey. Words matter, and because I’m no longer afraid to use mine and the term recovery has so much unintended ambiguity, I offer a new way to describe it that I learned from Dan Siegel (2007). The word is ipseity, meaning selfhood. I prefer to think of the journey to healing and wholing not as one in which we return to a previous state as implied by the term recovery, but as one in which we seek our ipseitious self, our most essential way of being in the world, one that “retains a sense of agency and is open to experiencing the full range of awareness extending from bodily sensation to a non-dualistic sense of the world where the boundaries of the body no longer define where ‘self’ begins and ends” (Siegel, 2007). There is a transcendent quality to this definition that rings true to me as a therapist and as one who’s lived the experience. It conveys the necessary shift from thinspiration to transpiration—the state in which we have an expanded sense of ourselves, an embodied experience of the collective, an abiding awareness of our “inter-are” (Nhat Hanh, 1999).

Conclusions

Being fully recovered from an ED, “getting real,” or, as I offered, enlivening one’s ipseitious self is a doable, biopsychosociospiritual process and outcome that needs further examination through a justice research lens in order to derive a consensus definition to properly evaluate and direct effective care. Providers, with or without lived experience, must patiently stay their therapeutic course so their patients can successfully live into their experience of recovery. As with the chrysalis, before it turns to wing, the butterfly must struggle to emerge from the cocoon and wait for its wings to dry. If rushed, it will shrivel and can’t fly. As with our patients, we need our wings as healers to inspire the butterfly effect, spread the truths about EDs, and uphold the healing light of hope for their wholing.

About the author:

Beth Hartman McGilley, Ph.D., FAED, CEDS, is a psychologist in private practice, specializing in the treatment of eating and related disorders, body image, athletes, trauma, and grief. A Fellow of the Academy for Eating Disorders (AED), and a Certified Eating Disorders Specialist, she has practiced for over 35 years, writing, lecturing, supervising, directing an inpatient eating disorders program, and providing individual, family, and group therapy.  She has presented, edited, and published extensively in the field of eating disorders, including being a former journal editor for Eating Disorders: The Journal of Treatment & Prevention, and co-editor for the book: Treatment of Eating Disorders: Bridging the Research/Practice Gap. In addition to her clinical work, Dr. McGilley has been a chair or member of numerous committees for the AED since its inception, a member of the Renfrew Conference Committee, and a core curriculum teacher for IAEDP certification students. Dr. McGilley also specializes in applications of sports psychology and performance enhancement techniques for athletes at all levels of competition. She was the sports psychology consultant for the Wichita State University Women’s Basketball team from 2005-2008. She was the co-founder and co-chair of the Association for Applied Sports Psychology (AASP) Eating Disorders Special Interest Group from 2007-2012.  Dr. McGilley co-founded and for 12 years served as the President of the Healing Path Foundation, a nonprofit foundation dedicated to the prevention and treatment of eating disorders in Kansas. She was a 2008 graduate of the Kansas Health Foundation Leadership Fellows Training program. Her hobbies include competitive cycling, hiking, writing, and time with her therapy dog, Wheeler the Healer.

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