The realization that your child is suffering from an eating disorder may come slowly, forcing itself to the surface through layers of doubt or denial. It can also come suddenly, with a doctor’s diagnosis or a call from the school counselor. But no matter how the knowledge comes, the next reaction is likely to be panic and a desperate search for information. How did this happen, and how can I help my child recover? From frantic Google searches to scouring bookstore shelves, parents will likely discover – as I did when faced with this situation – that what information is out there is complex, difficult to sort through, and often conflicting.
Take Famished: Eating Disorders and Failed Care in America (University of California Press), which came out in paperback in 2021. The author, scholar Rebecca J. Lester, almost died from anorexia nervosa at age 11 and again at 18. She uses her own near-fatal experience with anorexia as a point of departure to examine why we’ve largely failed to treat eating disorders (ED). “It is critical to understand that eating disorders are not about food – not really. They are about a deep, abiding, toxic shame and self-negation,” she writes in Famished.
In an essay on her own website, she gives parents and other readers a glimpse into her own harrowing experience of anorexia from age 8 to 26: “Having an eating disorder is excruciatingly awful. It is a miserable, grinding, dismal existence. Every second of every day is saturated with fear, anxiety, and self-loathing, with no end in sight. Food and eating (and not eating) becomes the absolute focus of all your energy and attention…You wonder what is wrong with you that you can’t just eat like everyone else and why you have to live in this misery.”
Now a professor of anthropology at the University of Washington in St. Louis and a licensed clinical social worker, Lester brings a researcher’s perspective to the discussion. She analyzes the ways eating disorders have been viewed from the earliest accounts to the modern day to highlight the misconceptions that have hindered treatment. This is especially important since eating disorders, untreated, are among the deadliest group of mental illnesses, with 26% of sufferers attempting to kill themselves.
In her tome, Lester issues a blistering condemnation of the health insurance industry and the many ways that concern over profit and cost takes precedence over quality and availability of care. Particularly damning is Lester’s examination of how health insurers often disqualify patients for coverage on the basis that they don’t meet “medical necessity” criteria – such as falling below a certain weight threshold – even though underlying mental health issues are a far more telling indicator.
This was my experience with my own daughter, who continued to suffer from severe bulimia, restricted eating, and psychological distress long after her weight crested the threshold of what would be considered a normal BMI. In fact, during the period when my daughter was at the most extreme risk – in distress severe enough to require hospitalization – her weight was within the range considered healthy for her height.
The book includes rich detail from Lester’s ethnographic study of one residential facility, Cedar Grove Eating Disorders Clinic in Wisconsin. Using it as a laboratory of sorts, she holds its methods up as a model of treatment based on the most current thinking, sharing stories from patients and highlighting the daunting challenges that both they and clinicians face. It works, to a point, though you can’t help but wonder, as a reader, whether other programs should have been included to provide a more comprehensive picture.
Unfortunately for the average reader, this book is aimed at academia. Lester goes far deeper into this analysis of eating disorder care than most of us need to, losing the reader with sentences like “Diagnosis entails integrating various elements – behavior, thoughts, feelings, history, level of functioning – into a composite whole around which epistemological and practical lines are drawn.”
Nonetheless, there’s a wealth of helpful information here, in far more depth than I’ve found in other books. In chapters with titles like The Hell that Saves You, Loosening the Ties that Bind, and Me, Myself, and ED, Lester immerses us in the practices of effective treatment, outlining the stages of care and examining the most effective therapeutic methods, even including transcripts of effective family and group therapy sessions. But the more practical and helpful material is enclosed in such thick layers of academic analysis that the average reader may find it extremely frustrating to excavate.
More useful for parents and anyone who has tried to help someone suffering from one of these persistent conditions is Shannon Michelle’s self-published book Parents Guide: Cutting Yourself on the Inside (2022), which largely delivers on the promise of its subtitle: Tips for identifying and overcoming a daughter’s anorexia nervosa. Michelle, who struggled with anorexia from the age of 12 but did not receive treatment until she was an adult due to lack of parental support, makes her mission clear from the book’s start:
“If I did have the support of my parents earlier and they had books like this to help them understand my behavior and mental state, I believe I would have found this journey a lot easier,” she writes. “As a parent, I urge you to enroll you daughter in some sessions as soon as you notice any symptoms because it will help her to heal at a younger age and give her more of a chance of having a long and healthy adulthood.”
To this end, she spends the first part of the book advising parents on the early signs of anorexia and bulimia and the many contributing factors to be aware of. This alone makes the book valuable in potentially reaching parents who are unaware or in denial about certain triggers and potential red flags – as I was when my daughter was struggling.
Michelle’s perspective, informed by her own experience, is particularly helpful in putting eating disorders in the larger context of self-harm. Describing the “temporary sense of calm and distraction” she felt from the hunger pangs of self-starvation, she notes the similarity of her experience with those who cut themselves to “purposely inflect physical pain on themselves in order to distract or numb the emotional pain they were experiencing.”
Also useful is her straightforward and understandable description of the primary therapeutic approaches. These include family-based treatment (FBT), also known as the Maudsley Method, in which parents are considered the experts on their child and key members of the treatment team.
Another well-known approach is cognitive behavioral therapy (CBT), which uses behavioral methods to treat bulimia and binge eating disorders. Enhanced cognitive behavioral therapy (CBT-E) has adapted CBT techniques for use in any type of eating disorder. CBT-E, Michelle writes, will help any girl or woman grappling with an eating disorder “recognize the unhealthy patterns she is building and the triggers that ignite them, while bringing her back to a truer sense of reality.”
I particularly appreciated Michelle’s honesty about some of the trickier issues facing those in recovery. She discusses the benefits and risks of group therapy with honesty, noting that while group sessions can break through isolation, they can also normalize the disordered eating and set up a type of social support for the anorexic behaviors. And she’s both realistic and reassuring when discussing relapse, alerting parents that relapse is common and can even be an important part of recovery as “an opportunity to learn, grow stronger, and show anorexia just how resilient you can be.”
While her tendency toward simplification will be helpful for parents at the start of this journey, who are likely to feel overwhelmed by all the information being thrown at them, it can be misleading at times. This can be seen, for example, in her discussion of how medication can help with the depression and anxiety that so often intertwine with eating disorders. Michelle notes that while antidepressant and antipsychotic medications are frequently prescribed for adults with eating disorders, parents and doctors are often reluctant to use them for children and teens.
For this reason, she says, “you should never self-prescribe or give your child any medication without the consent of a registered doctor.” Since few parents would “self-prescribe” medication, this isn’t terribly helpful. It could also leave parents thinking psychiatric medications weren’t a good idea for teens with eating disorders, when in fact they can be an important component of successful treatment.
And although some research has suggested that families of children with eating disorders are often marked by rigidity and too great a focus on success, the current thinking in family-based therapy for eating disorders is to empower parents and patients rather than assign blame. Michelle does parents a great service by inviting them to “remember that anorexia is nobody’s fault.” With so much of the treatment for eating disorders focused on identifying and changing family dynamics, parents too often end up feeling both guilty and blamed, which only makes the fight to loosen the hold of this tenacious disease more painful.
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