We need increased research funding to understand eating disorders

For over 35 years, I had an eating disorder without even knowing.  Thanks to research, I was eventually diagnosed with binge eating disorder and atypical anorexia. But the only atypical thing was that I didn’t look the part of the stereotypical sufferer of eating disorders.

When Taylor Swift recently spoke about her past struggles with unhealthy weight control behaviors and the intense societal pressures that often drive these behaviors, she shined a light on a spectrum of illnesses that affect millions of Americans of all shapes, sizes, and ethnicities. Not everyone fits neatly into a diagnostic category. 

I hope that Taylor’s words will encourage others to speak out and rally together to improve public understanding of eating disorders, their causes, dangers, and treatments. Because despite all we’ve accomplished in the last decade, there is still more we don’t know about eating disorders than we know.

While laws such as the Anna Westin Act — which allocated critical funds towards awareness education — are commendable, the resources to help us fully comprehend these complex mental illnesses are still lacking. Despite having the second-highest mortality rate of any mental illness, it receives just $0.93 in research funds per affected person. To put that in perspective, all other major mental illnesses get an average of $70 per affected person.

To be sure, those illnesses fully deserve the funds they receive, and we should continue to pour resources into research. But eating disorders deserve equal attention. It’s time we stop treating them as vanity illnesses and put serious effort into research that can help us broaden the understanding of what eating disorders are and who they affect.

Part of the reason funding remains low for eating disorders research is the culture in which we live. Appearance ideals, which were designed to be unattainable, trap people into spending their time and money becoming “healthy, “fit,” and “toned.” In certain cases, the measures people go through to attain them — like restrictive diets and exercise with the intention of changing the way you look — can perpetuate disordered eating or even trigger an eating disorder, as was the case with Taylor Swift.

Eating disorders are not an illness that affects only a minority of white, affluent women. Current numbers suggest 30 million Americans will be affected by eating disorders during their lifetime, and it’s not only anorexia. The most common eating disorder is the one I suffered from — binge eating disorder, which was not officially recognized as a diagnosis until 2013. Further research can not only help us further understand the entire spectrum of eating disorders but can also identify stories of those suffering who represent all different body types, ethnicities, and sexualities.

Unfortunately, a large number of issues remain unknown or understudied. How do genetics affect eating disorders? What role does weight stigma play? How can we catch them earlier? This is just a partial list of questions that we still don’t know the answers to. 

Taylor Swift brought newfound attention to a lot of these issues in her recent documentary. Now it’s up to us as citizens to make sure we do more than just talking about them. Given the number of people affected by eating disorders and the pervasive impact of diet culture in our everyday lives, we can no longer wait for change to come. I implore the public to reach out to their local representatives to make their voices heard on these issues, because, as we’ve seen time and time again, change starts on the local level.

On Feb. 28, the National Eating Disorders Association (NEDA) is hosting an in-district lobbying day. Increased NIH funding is on the agenda that day and, armed with talking points and data, citizens can express to their Representatives why eating disorders research is so important. This coincides with National Eating Disorders Awareness Week on Feb. 24 through March 1, where NEDA will emphasize greater inclusion and acceptance in the eating disorders community.

I first binged when I was just 5-years-old and, because there wasn’t a name to what I was experiencing, I didn’t get help until I was in my late 30s. Research eventually gave my disorder a name and put me on a path to recovery — but it’s increasingly clear that one size doesn’t fit all when it comes to diagnoses. The more funding allocated to eating disorders research, the quicker we can learn more about what causes them — and the quicker we can save more lives.

Chevese Turner is the chief policy and strategy officer at the National Eating Disorders Association.