Illustration: Carolyn Figel

I Inherited My Eating Disorder, and Science Agrees

Why I signed up for these studies in a heartbeat — and you might want to, too

This month, Cynthia Bulik, PhD, founding director of the University of North Carolina Center of Excellence for Eating Disorders, is launching the Eating Disorders Genetics Initiative (EDGI) research study. Bulik and her team have already launched the study in New Zealand and Australia and are now rolling it out in the United States, with the ultimate goal of enrolling 100,000 individuals worldwide who have lived with anorexia, bulimia, or binge-eating disorder at any time in their lives. The investigation is based on the initial findings from the Anorexia Nervosa Genetics Initiative, aka ANGI, the first international effort to identify genes that increase the risk for anorexia.

“ANGI shed new light on the origins of anorexia nervosa and those transformative findings inspired us to use the same strategies to investigate the genetic causes of bulimia and binge-eating disorder as well,” Bulik says.

A first-degree relative of someone with a disorder is up to 12 times more likely to develop one than a relative of someone ED-free.

Experts have long known that eating disorders stem from a combination of hereditary and environmental factors, but no one had ever delved deep enough to pinpoint the specific genes at play until Bulik and her team stepped up to the plate. ANGI’s findings have been illuminating for researchers and patients, revealing that the origins of anorexia include a combination of metabolic and psychiatric components. More specifically, ANGI identified eight genetic variants significantly associated with anorexia nervosa; and the research shows that the origins of this serious disorder appear to be both physical and psychological.

Earlier research from Bulik and colleagues found that a first-degree relative of someone with a disorder is up to 12 times more likely to develop one than a relative of someone ED-free. I’d been aware of these stats for a long time but had never really examined how my anorexia may have descended from my mom’s bulimia until Bulik’s research forced me to take a long, hard look at our issues and how they’d evolved individually and together.

For my entire 36 years on the planet, my mom has been my best friend; for at least 30 of those years, we’ve fought about weight. We’ve fought about my body hatred, my refusal to accept the natural curves that run in our family, my anger at her telling me when I’m too thin, and my rage at never actually feeling thin enough. No matter where the scale has fallen, the psychological torment of both the disorder and our relationship around it and to it has persisted — a testament to the fact that eating disorders “count” whether or not they reach TV movie proportions. Truthfully, most people suffer silently for years or drop dead without ever “looking the part.” I never looked like the emaciated lead of a Lifetime TV movie or after-school special on anorexia and I endured many a well-intentioned “but you look perfectly healthy”s. I spent years consumed by self-loathing, dragging my mom to every depressing stop along the way as doctors tried to medicate my missing periods with birth control while questioning my family’s role in my own issues.

My mom, meanwhile, doesn’t remember a time when she wasn’t overweight. It wasn’t until she immigrated to America from Russia as an adult that she was diagnosed with hypothyroidism, much too late to prevent an avalanche of desperate, disordered behaviors. First came years of purging, then starvation diets and now-outlawed pharmaceuticals, including Fen-Phen and Redux, two medications which were eventually yanked from shelves because they were found to cause heart valve problems. I remember accompanying her to diet doctor appointments and opening the kitchen cabinets only to find a lifetime supply of SlimFast bars and artificial sweeteners. But for a long time, her habits were off-putting rather than influential; I hated that she devoted so much mental energy to counting and burning calories. And then, in my junior year of high school, something snapped and I kickstarted a decades-long journey that would include two stints in intensive outpatient (IOP) care and a whole lot of fighting as my mom’s own eating disorder ceased and her attention turned to managing mine.

I participated in Bulik’s ANGI research during my second round of IOP — the one I like to think finally pushed me far enough out of my disorder so that I could finally see how much it had stolen from my life. All I had to do was go to my doctor’s office for a two-minute blood draw, which my mom accompanied me to on my 30th birthday. By the time ANGI wrapped up in July 2016, Bulik and her team had successfully collected samples from over 13,000 people who’ve had anorexia and over 9,000 controls (people who’ve never had the disease). But that was just the beginning; ANGI’s samples also fed into the Psychiatric Genomics Consortium (PGC), psychiatry’s most ambitious collaboration ever, with researchers from all over the world aiming to analyze genomic data from 100,000 samples for every mental disorder.

ANGI concluded that anorexia may be a “metabo-psychiatric disorder” and that it will be important to consider both metabolic and psychological risk factors when exploring new avenues for treating this potentially lethal illness.

According to the paper Bulik and her colleagues published in Nature Genetics in July 2019, ANGI revealed for the first time that there’s a genetic basis of anorexia that overlaps with metabolic traits, including how the body processes sugar and fats, as well as anthropometric (body measurement) characteristics that are not due to the genetic effects that influence body mass index (BMI). The upshot: It doesn’t matter what size, shape, or weight you are — anyone with these metabolic traits could be vulnerable to developing anorexia.

“Until now, our focus has been on the psychological aspects of anorexia, such as the patients’ drive for thinness,” Bulik says. “Our findings strongly encourage us to also shine the torch on the role of metabolism to help understand why individuals with anorexia frequently drop back to dangerously low weights, even after therapeutic renourishment. A failure to consider the role of metabolism may have contributed to the poor track record among health professionals in treating this illness.”

ANGI also found that the genetic basis of anorexia nervosa overlaps with other psychiatric disorders such as obsessive-compulsive disorder, depression, anxiety, and schizophrenia. Genetic factors associated with anorexia also influence physical activity, which could help explain the tendency for people with anorexia nervosa to be highly active (as a compulsive over-exerciser, this one speaks to me). ANGI concluded that anorexia may be a “metabo-psychiatric disorder” and that it will be important to consider both metabolic and psychological risk factors when exploring new avenues for treating this potentially lethal illness. Now Bulik and her team are ready to learn more with EDGI (to find out if you’re eligible to participate, click here).

I couldn’t be more ready to participate in EDGI and bring my mom along with me to that blood draw. After our visit to the lab for the ANGI sample, we spent the evening of my birthday in a family therapy session. “I always thought if I talked louder and longer, I could fix it,” she told me. “But that night when the therapist told me, ‘nothing you do or say can change the situation — it’s not up to you, it’s out of your control,’ something clicked.” That day’s events seemed to wipe the slate clean, creating an unprecedented space for us to recognize and release the past and tentatively forge ahead. At this point, we’re both ready to keep going.

Michelle Konstantinovsky is a San Francisco native, journalist, and fan of all things pop culture. Find her @michellekmedia and visit www.michellekmedia.com.

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