When Mae Lynn Reyes-Rodríguez was a graduate student in psychology at the University of Puerto Rico in the early 1990s, she learned there were no studies of how many Latinos suffered from anorexia, bulimia or binge-eating disorder.
A quarter century later, research on eating disorders primarily remains focused on white women, says Reyes-Rodríguez, now a clinical psychologist at UNC-Chapel Hill’s Center of Excellence for Eating Disorders.
“Eating disorders have the highest mortality of any mental health condition,” she says, “We need more research, especially clinical trials with diverse populations, because [right] now we are generalizing all research findings from Caucasians.”
According to the National Eating Disorders Association, eating disorders affect up to 30 million people in the U.S. — two-thirds of them women. While there is more recognition that eating disorders affect people of all races and ethnicities, Reyes-Rodríguez says racially and ethnically diverse communities don’t have equal access to treatments.
“We need to develop culturally sensitive treatments,” she says.
That’s exactly what self-described “chubby warrior” Gloria Lucas is doing. Her struggle with compulsive overeating began when she was 17. But because talking about eating disorders was taboo in her community, her family didn’t know how to respond. “My parents didn’t have any clue [about my eating disorder],” she says. “They still don’t quite understand it to this day.”
Therapy or traditional Twelve Step recovery programs were not “culturally relevant,” for the 24-year-old Lucas, who describes herself as Xicanista, or Chicana feminist. For Lucas, healing from her eating disorder was both a health issue and a political statement. “Understanding how sexism, colonialism and other issues affected my body … has got me the most amount of healing,” she said.
Lucas founded Nalgona Positivity Pride a “body positive” site for communities of color. Since July, Nalgona (which translates to “big butt” in Spanish) has hosted a semi-monthly eating disorder support group in Los Angeles for people from diverse backgrounds.
Lucas’s work is especially important in a community that has negative associations with mental health treatment. Reyes-Rodriguez says that cultural and language barriers prevent many Latinas from receiving the care they need to recover from eating disorders, and cultural norms may be putting Latina women at particular risk for developing them.
“The majority of immigrant women and some U.S.-born Latinas are given cultural messages that they have to eat all the food on their plate,” she says.
Nalgona Positivity Pride is just one of many initiatives that aim to challenge the misconception that eating disorders only affect white women. Asian American communities have also been left in the dark around eating disorders. Much like Latinos, few studies have been conducted on eating disorders among Asian Americans and Pacific Islanders.
Lynn Chen, 38, wants to change that. She co-founded Thick Dumpling Skin, an organization that aims to, “create a community for Asian Americans to discuss their past, present, and future relationships with their bodies.”
Chen, a Cresskill, N.J. native raised by Taiwanese parents, says she received mixed messages as a child: she was encouraged to eat large quantities of food, but remain skinny.
Growing up, she struggled with binge-eating. During the worst times, Chen, an actress, would have what she called “last supper” days. She’d make sure she didn’t have anything scheduled and would begin eating starting in the morning and ending in the evening.
“It could have been carrots and hummus or cookies, whatever was easy to eat. Some days I was on a set where there were snacks as far as the eyes can see. I’d be eating my feelings all day long,” recalls Chen. She wouldn’t purposefully purge, but there were a handful of times she began involuntarily throwing up for days.
“I have been binge eating my whole life,” Chen says, adding that she also struggled with anorexia after being cast in a soap opera in 2004. “The dieting became anorexia. I’d go through a period of binge-eating and a period of starvation.”
Chen, like Lucas, hopes to bring awareness of eating disorders to diverse communities. By sharing her stories, she hopes young women can avoid the confusion and pitfalls she struggled with growing up.
She recently went on a five-day food tour in Taiwan. “I warned everyone, my white husband included. … ‘They’re going to want to stuff you (with food). It’s a cultural thing. You’re going to have to be ok saying ‘no,’” Chen recalled. She adds that she felt the tour guide was shaming her for not eating all the food she was served. “I told her, ‘listen, I have an eating disorder, I’m not eating more than I feel comfortable with.”
Fi2W is supported by the David and Katherine Moore Family Foundation, the Ralph E. Odgen Foundation, the Nicholas B. Ottaway Foundation, and anonymous donor and readers like you.