University of Michigan School of Information assistant professor Nazanin Andalibi has earned a grant through the U-M Institute for Research on Women and Gender (IRWG) to investigate “An Intersectional Examination of Social Media’s Role in Navigating Life with Endometriosis.”  

Endometriosis is a chronic, inflammatory condition that impacts more than 11% of cisgender women and an unclear number of transgender, nonbinary, and genderfluid individuals. It leads to symptoms such as chronic pain, pain with sexual intercourse and penetration, infertility, fatigue, and urological and gastrointestinal symptoms among others. 

Endometriosis can negatively impact quality of life, mental health, social life and the career of the person navigating endometriosis. According to research Andalibi references in her proposal, the condition typically takes an average of 4-11 years for diagnosis, with patients commonly being told that “it is all in your head.” 

Andalibi’s research will take a look at the harms and benefits of social media for specific groups of people living with endometriosis. Andalibi says the existing inequities in accessing proper diagnoses and treatment, as well as misconceptions about patients, pushes people to turn to social media and online communities for support. Her project will examine the role of social media for marginalized  individuals living with endometriosis searching for community through online spaces. 

“I argue that because nonbinary, transgender, and other minoritized genders as well as people of color and of lower socioeconomic status tend to experience exacerbated inequities in seeking and accessing

endometriosis care, it is important to examine what role online communities and social media play in relation to living with endometriosis for individuals who hold one or more of these minoritized positions,” she says. 

Results from Andalibi’s study will provide instruction on how to design online spaces that are equitable and safe. The IRWG grants are designed to support research on gender across U-M campuses and spur collaborative research projects across disciplines. 

“The history of medicine, including endometriosis, is horrifyingly ripe with mistreatment of people with uteruses,” Andalibi says. “I am excited for this project as part of a larger research program at the intersection of reproductive health, justice and technology, and to bring to the foreground the experiences of people living with endometriosis in particular.” 

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Learn more about Nazanin Andalibi’s research on reproductive health, social media and marginalization by visiting her UMSI faculty profile. 

Read about more projects from U-M’s Institute for Research on Women and Gender.