by Michael P. Levine, Ph.D., FAED
I was both honored and unsettled when Judy Krasna invited me to write about the direct importance for families of research-based knowledge regarding eating disorders (EDs). After all, for over 35 years—as an advocate, a researcher, a professor, and an author—I’ve been immersed in the roles played by different types of research-based knowledge in the investigation and prevention of EDs, disordered eating (DE), and negative body image. And over that period my confidence in what I know has grown more balanced, and sometimes more unsettled, by my confidence in what I and others in the field still don’t know. However, to use a cliché, this much I know is true. It is imperative that all of us—researchers, clinicians, and family members alike—must commit to continually engaging with the meaning(s) and implication(s) of such ostensibly simple concepts as “gender,” “risk factor,” “evidence-based,” “recovery,” and, my personal favorite, “biologically based mental illness.”
I offer for your consideration three reasons why families should be conversant with ED research findings. According to etymology.com, “conversant” is derived from the medieval Latin conversare, meaning to “live with,” to “keep company with,” and to “turn round with.” Metaphorically, latter connotation focuses us on a relationship with knowledge that enables families to change course and/or dance gracefully with what they do know, what they don’t know, and their emerging wisdom to understand the difference.
The first reason is parents’ and partners’ need, and indeed their authentic desire, to be an authoritative advocate for their child’s or partner’s recovery. As yet there is no list of “9 Painful Eating Disorders Truths.” That is not the type of knowledge that inspires families, patients, funding agencies, and media. Nevertheless, the following, for example, is well-documented in the research literature and in families’ lived experiences. Consider the process of identification of a “real problem,” acceptance of that condition as “real” by the family, accurate diagnosis of the ED, effective treatment, dealing with relapse, and ultimately (hopefully) recovery. Together these steps typically constitute a multi-year, non-linear, sometimes tortuous journey for all concerned.
Specifically, I am willing to bet that at least 95% of all people with an ED have been unintentionally harmed by a medical, psychological, or nutritional professional who did not know what they were doing. Moreover, even if the first phases of the recovery process go smoothly, which they hardly ever do, even the best “evidence-based” therapies, delivered by experts, result in full and sustained recovery less than 60% of the time, and only after a number of critically important years have passed. In the process of their loved one’s recovery, including harrowing declines or relapses, up-to-date information about what is known and what is not known can aid families in making the best decision possible, under difficult circumstances, with the best information available.
According to a Google Scholar search I recently conducted, in 2019 and 2020 there were approximately 625 publications, not counting books, with (“EATING DISORDERS or ANOREXIA”) AND (“THERAPY, TREATMENT, or INTERVENTION”) in the title. It is silly to expect even expert clinicians or prolific, influential researchers to be “authorities” on such a vast and expanding body of research. It is not silly to recommend that parents develop an “authoritative” (vs. authoritarian) and “good enough” understanding of the research that is relevant to them. This will likely include (a) the impact of the disorder on the body’s, including the brain’s, ability to facilitate change; (b) the nature, strengths, and limits of family-based therapy; (c) the definition(s) and variable course of recovery; and (d) the importance of multifaceted support for families. Becoming conversant with this literature will facilitate a greater understanding, not necessarily of “the answers,” but certainly of the important questions and the available, reasonable options.
Collaborating at the Table
Recently, during our morning coffee time, my wife read aloud the following quote from the late Ann Richards, former Governor of Texas: “If you are not at the table, you are on the menu.” Although extreme, I am certain this resonates with many readers. Parents around the world, including the leaders and members of F.E.A.S.T., have worked hard to make their needs known to leading ED organizations. They have used their voices (advocare [Latin] = to call, or summon, as a witness or adviser), in print and in person, to position parents and other family members as resources for recovery, for legislative advocacy, and for recognition of the multifaceted value of lived experience.
There is no doubt that psychiatry, psychology (my profession), and other mental health professions continue to define “science” and “facts” in ways that obscure the roles of gender, privilege, formal education, and political power. The antidote to this sad, sometimes terrible state of affairs is not a privileging of “lived experience,” or repetition of simplistic, indefensible contentions that “we all know eating disorders are genetic” or “anorexia nervosa is the only real eating disorder, so that’s where the money should be going.” The answer—no, the starting question—is: what can people who care about and care for people with EDs do to collaborate and learn from each other?
Parents and partners, including those who have had an ED, should be at the decision-making table. And researchers need to continue having a voice at the table, and we speak in certain terms about wide variety of findings. Professionals need to listen respectfully to the lived experiences and accumulated wisdom of non-professionals. Conversely (also derived from conversare), it behooves parents and other adult family members to become conversant with some of those professional terms and, more importantly, with a wide range of findings. This relational literacy will help us all clarify and build upon what makes eating disorders distinct from, say, anxiety disorder or substance use disorders, even as comorbidity and similarities are real and important phenomena.
The third reason follows logically from these well-established facts: some families are at comparatively greater risk for EDs; this risk appears to be non-specific to a particular category of ED; and this genetic vulnerability is attributable to a combination of genes transacting with non-genetic factors. This knowledge point to a phenomenon particularly deserving of attention from parents with multiple children, one of whom has an ED, and from prevention researchers.
Having recently written a book on the prevention of EDs and DE, I can say with confidence that there are no empirical studies of prevention needs, programming, or outcomes for at-risk families. Parents do not cause eating disorders, and we all have a responsibility to make our families and the world a better place for recovery and for prevention. Thus, it is especially important for at-risk families to be conversant with the prevention literature. This includes research on what parents (and partners) can do and be to promote body positivity, reduce weight stigma, and foster effective ways to experience, express, and manage emotions such as anger and anxiety. Parental and familial commitments to social justice issues, such as acceptance of size diversity and reduction of forces that objectify the human body and spirit, will not only promote prevention, it will create the type of worlds that encourage their ill child’s or their ill partner’s recovery.
Where to Begin
Given all their challenges and responsibilities, how can adult family members, at any stage in their loved one’s recovery, find and digest important, up-to-date research findings? If your child, or partner, and family are in therapy, ask your therapist or team leader for one or two research publications that address what those professionals feel is most timely for you to know or think about. In addition, consult recommended readings for families on websites such as F.E.A.S.T. (https://www.feast-ed.org), EDANZ (https://www.ed.org.nz/), the National Eating Disorders Association (NEDA) (https://www.nationaleatingdisorders.org/), and the National Association of Anorexia Nervosa and Associated Disorders (ANAD) (https://anad.org/) .
While I was growing up, I grew so tired of hearing my father repeat “If you need information, go to a library; if you don’t know where to start, ask a reference librarian.” Of course, now I am passing that wisdom on to you. In fact, I have a specific recommendation for you in regard to EDs, namely my friend, colleague, reference librarian, and social justice advocate Ms. Millie Plotkin, who operates the Eating Disorders Information Gateway (https://www.eatingrecoverycenter.com/professionals/resources/information-gateway).
Connection and openness are two key components in the recovery process for families with EDs. I admit that connection with and openness to research findings in the array of topics comprising the EDs literature are neither sufficient nor even necessary for EDs recovery. Yet this form of literacy will likely facilitate your loved one’s recovery and your family’s development. And it will certainly connect you with people such as Judy Krasna, Nicki Wilson, and Laura Collins Lyster-Mensh, who are integrating their research-based knowledge, their wisdom, and their voices to help other families and to advance—and dance with—the field of eating disorders in general.