by Cynthia Bulik, PhD
Emilee: The Story of a Girl and Her Family Hijacked by Anorexia
by Linda, John, and Emilee Mazur
Before she died, Emilee told her mother that she wanted her story to be told. It’s hard to imagine the strength it took for her parents to retell the painful details of their daughter’s descent from joyful child to hollow hijacked victim of recalcitrant anorexia nervosa intertwined with anxiety and substance use. Yet they do so masterfully and compassionately; their pain and love palpable on every page.
Before diving into this review, a few “heads ups” about the book and who should read it. The Mazurs present a frank, honest, and chilling account of their daughter’s illness and treatment course. It is realistic precisely because it is real. They lived, observed, and captured this horrifying illness with accuracy and compassion. If you are someone who is struggling to understand anorexia nervosa or is mired in misconceptions, you should read this book. You will never again underestimate the power of this disease to rob someone of their life. If you are a clinician who works with patients with eating disorders and their families…and even more importantly, if you are any type of a healthcare worker who received little, no, or inaccurate training about eating disorders, you should read this book. It illustrates in vivid detail the extent to which families are devastated by the illness, and the extent to which parents go to try anything and everything to gain control over an all-consuming disease. If you have ever been in the position to deny insurance coverage for someone with anorexia nervosa, I can only hope that you read this book, because it raises the question of the extent to which our broken healthcare system contributes to the development of recalcitrant anorexia nervosa. If you are someone with an eating disorder, I strongly urge caution. I do not think there is a way to predict how this book could affect you, and if there is any question at all about whether it might be triggering, I would counsel you to err on the side of caution, and instead give it to someone who loves you to read.
Linda and Jack Mazur take turn narrating moments from their family’s life, with snippets from Emilee’s own writing and pictures from the progression of their family’s life together. This structure has the potential of creating a Rashomon effect—different perspectives recounting different perceptions of reality—but the fact that it does not, underscores how united her parents were in doing whatever possible to help Emilee recover. They capture the utter confusion as anorexia transforms their daughter into someone who is nearly unrecognizable and their desperate quest to do whatever possible to get their Emilee back.
Aside from the illness itself, the villains in this story are the faceless insurance companies who deauthorized Emilee’s treatment on multiple occasions undermining any potential effectiveness of the interventions she received. I found myself screaming on the inside that someone who had never laid eyes on this woman had the power to make what ended up being life-ending decisions about her need for treatment. Her multiple episodes of premature treatment termination made me wonder about the extent to which our healthcare system contributes to the emergence of severe and enduring or recalcitrant anorexia nervosa. What is the effect of repeated failures to allow the body’s metabolism to re-equilibrate at a healthy weight on perpetuating the illness? Discharging someone with anorexia nervosa from inpatient treatment at 85% of their ideal body weight is a sick metabolic joke.
The book also hammered home how horrible we are at treating comorbidity—especially between eating disorders and substance use disorders. The eating disorders programs won’t take you if you have active substance abuse, and the substance abuse programs won’t take you if you have an active eating disorder. Treating them sequentially completely misses the fact that they are symptomatically intertwined. Sure programs exist that treat both, but they are expensive and not evidence based.
As I write this, I become more and more furious at the US system. I honor those who are working to improve access and disseminate evidence-base practices. I look beyond our borders for models that do better in treating eating disorders—better for patients and for their families.
The Mazurs were brave to write this book and to honor Emilee’s wishes to have her story be told. Emilee knew that things around her were broken, and she hoped that her story might help others avoid the hell that she experienced. That is a near universal sentiment of individuals with this illness, they always hope that others will be spared the horrors that they faced when hijacked by anorexia nervosa.
Through the course of my career, I have read so many books on anorexia nervosa written by individuals with the illness or their family members. Although each case is different and unique, they all illustrate how insidiously this disorder hijacks the brain, the body, and the personality of those it afflicts.
I highly recommend this book and am grateful to Linda and Jack Mazur for writing it and to Emilee for asking that her story be told.
You can find Emilee on Amazon here.