There is a common misconception that eating disorders are a personal choice; in reality, the National Institute of Mental Health recognizes eating disorders as illnesses that can be fatal. The National Eating Disorders Association (NEDA) estimates that 30 million people in the United States alone will face an eating disorder at some point during their lives.

As a person who has recovered from an eating disorder, James Rose understands the impact such an illness can have on one’s life. They described their relationship with food in college as one of fear. Furthermore, James says, social identities play a major – and often overlooked – role in the ways that eating disorders present themselves. “In order to truly understand the pathogenesis and manifestation of eating disorders, we must also understand the social identities under which they function,” they say.

A founding member of the Lived Experience Taskforce at the NEDA, James works to help raise awareness of the needs and experiences of people with eating disorders whose identities have historically been marginalized. James says that they respect NEDA’s willingness to listen to their constituents’ voices and reexamine the effects that culture, language, and narratives play in interpreting those experiences. Per James, the Lived Experience Taskforce works to relinquish privileges and enable people with historically excluded identities to have a seat at the table. James stresses the importance of prioritizing funding to study marginalized communities that have previously been excluded from research into eating disorders.

That’s why James values their participation as a consumer peer reviewer for the Peer Reviewed Medical Research Program (PRMRP) for the Topic Area of Eating Disorders during fiscal year 2021 (FY21) and FY22. The PRMRP has addressed eating disorders as a Topic Area from FY17 through FY22. During that time, the PRMRP has issued 13 awards totaling $16.73 million to support research of clear scientific merit in the area of eating disorders.

James was referred to the PRMRP by a NEDA executive because of their experience with the medical and social science aspects of eating disorders. At first, James felt nervous about discussing research applications with doctors and clinical specialists who were experts in scientific methodology and research strategy. James quickly discovered that not only did they know more than they thought, but also that their perspective was welcomed and valued by the other panelists. “They have welcomed me into the review process and treated me as an equal, an expert on my own experience,” James said. “That has empowered me to continue returning to my community to assess what our needs truly are.”

Those needs, James explains, include gaining a better understanding of the pathogenesis and manifestations of eating disorders in communities that have not been widely represented in past scientific studies. James says that social identities are a major influence on how eating disorders manifest and present. They advocate for researchers to strive for greater inclusion of Black and indigenous people, people of color, transgender people, fat people, and people with comorbidities in scientific studies, and also to invite them to participate in developing the studies themselves.

James’ advocacy goes hand-in-hand with the value they place on the many and varied relationships they have developed over the years. “I think one of the greatest gifts we can give is unwavering, honest friendship, especially as queer people,” they say. “Sometimes we only have each other, and the harder we love each other, the more of an example we set for how the rest of the world can love us too.”

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy or decision.