About a year ago, I gave a lunch talk to a group of family lawyers. I talked about drug addiction. Everyone nodded. I talked about alcoholism, and everyone knew someone. I talked about my two decades plus struggle with anorexia, then bulimia dating back to my freshman year at Penn State, through law school, and while a practicing attorney. People looked at me like I was from Mars. I asked for a show of hands of how many in the room had never heard a male actually talk about having an eating disorder. Many hands went up.
Last week saw some conflict in the realm of eating disorder advocacy around the role of feminism in eating disorders treatment and recovery. It began with some “live tweets” from the Keynote Address at the 15th Renfrew Center Annual Gala. Renfrew is an eating disorders treatment center (that according to their website, treats only women). Feminist Gloria Steinem delivered the speech.
Eating disorder awareness advocate Brian Cuban and I took note of the tweets. We were concerned about the evidence-based foundation for endorsing an outdated feminist understanding of eating disorder treatment and recovery with the choice of speaker. We were also concerned with a treatment center promoting gender bias in an arena where males are still struggling with high levels of stigma resulting in an exponentially more difficult time than females getting diagnosed and treated for eating disorders.
In truth, all-female eating disorder treatment centers should be a thing of the past if current research informs treatment.
Brian struggled with bulimia for over two decades and December 1, 2015 will mark four years since my youngest daughter started a “healthy eating makeover” and quickly and dangerously spiraled down the eating disorder (ED) rabbit hole. Because she fit the stereotype of an anorexic (affluent, white, female, teen), she was diagnosed quickly. Because we live in San Diego and have excellent insurance, she got immediate, state-of-the-art treatment at University of California San Diego (UCSD), an academic center that bases their treatment on the latest research findings in the field.
UCSD’s approach is “agnostic” as to the cause of a person’s eating disorder and focuses on treating the ED rather than conducting archeology to determine a cause. Importantly, they do not believe an eating disorder has an “underlying cause,” but rather that it is a biological, brain-based disorder related to a period of a negative energy balance in a genetically vulnerable person. This is not to say there are not those with other issues that will need to be dealt with during the recovery process, but that is very different than those issues being seen as the cause of an eating disorder. It’s an approach that works to save both lives and years to decades of suffering on the part of both patients and families.
For Brian and I both, as relative newcomers to the eating disorder advocacy movement, our biggest shock and disappointment has been with the many clinicians, treatment centers, and even advocates clinging to yesterday’s understanding of eating disorders. When we saw tweets coming out of the 2015 Renfrew Center Foundation we were confused, angry and sad.
Confused: Why would a leading treatment center give a keynote platform to a speaker with a particular, feminist viewpoint of eating disorders rooted in 1985 and which hasn’t evolved to keep pace with 21st century research findings? Why would anyone (Steinem or Renfrew) want to add to the societal “knowing” of eating disorders that reinforces the public to think they are about choice and vanity? Why—and this is a HUGE one—is it okay to espouse an understanding of EDs that makes it sound like eating disorders don’t impact males?
We are wondering how Renfrew and Steinem would explain the eating disorder of my friend’s son—a mere child, growing up running free in nature on beautiful acreage in New Zealand and with no knowledge of gender prisons and no need to rebel against an unjust world?
Angry: Eating disorders have the highest mortality rate of any mental illness and they come with a host of medical complications that can happen quickly and last for a lifetime. “Treatment as usual” (the eating disorder must MEAN something so let’s figure that out first) has an abysmal track record with 2/3 of those affected having a moderate lifelong struggle with a relapse/recovery cycle or a severe struggle ending in premature death (statistics according to the Eating Disorders Coalition). Why continue to base treatment and advocacy on an outdated understanding that is dismissive and cruel to males impacted by EDs?
Sad: Eating disorders affect all genders, occur in all cultures and have been present throughout history; yet the public dialogue, encouraged and promoted by people and entities like Steinem and Renfrew, continues to center around white females. Society funds Alzheimer’s at the rate of about $100/sufferer because we know it can happen in all families and to our own loved ones. Society funds EDs at a rate of about $1/sufferer because they “know” they only happen to affluent white teen girls with controlling parents.
If Renfrew wants to make women and feminism a cornerstone of a future conference, we have some Keynote speaker suggestions: Dr. Cynthia Bulik, who is conducting amazing research at UNC with the Anorexia Nervosa Genetics Initiative; Dr. Laura Hill whose research and interpretation of the latest findings have helped countless families and individuals understand why it is such a struggle for someone affected with an eating disorder to just eat; Dr. Roxanne Rockwell, who has helped build, from the ground up, an evidence-based treatment program that produces results for male and female patients alike, or perhaps Laura Collins, an advocate who has worked tirelessly to promote increased access to evidence-based treatment models based on current research.
Eating disorders are not female-only problems and it is long past time for both Gloria Steinem and Renfrew to embrace that understanding and evolve to become part of the treatment solution rather than part of the access-to-diagnosis-and-treatment problem that is, in a very real way, hurting and even killing our fathers, brothers, sons and partners.
JD Ouellette and Brian Cuban
Advocates For Evidence-Based Treatment Availability For All Who Need It.
In order to prevent giving out medical advice which is off the mark or potentially damaging to the point of terminal, standard practice for any advice columnist should be to consult an expert and disclose who they contacted. If no expert is available, they should just shut up.
Hollywood and TV’s leading male action stars — such as Hugh Jackman, who plays Wolverine in “X-Men,” and Stephen Amell, known to “Arrow” fans as Oliver Queen — possess all these physical characteristics and more.
Brian Cuban is a an author whose best-selling book “Shattered Image: My Triumph Over Body Dysmorphic Disorder” chronicles his first-hand experiences living with, and recovering from childhood bullying, eating disorders and Body Dysmorphia Disorder (BDD) and drug addiction. Brian speaks regularly to about his recovery and breaking the male eating disorder stigma. You can purchase Shattered Image here If you would like Brian to speak to your university, group or organization please email firstname.lastname@example.org
For interview requests please contact MWilson@rubensteinpr.com
Brian Cuban spoke recently about being a grown man with bulimia and anorexia nervosa; about the shock it elicits when he brings up his diagnoses, and the childhood relationships and family dynamics that fostered them.
Like many boys in the ‘Burgh, Brian Cuban idolized Roberto Clemente and played on a Little League team as an adolescent. The Mt. Lebanon native cherishes the memory of hitting a grand slam in his first game.