Hidden Disability: Seeking Support and Understanding for Endometriosis in an Online Community

Jessica Chaikof

(Sponsored by College of Computer, Mathematical and Natural Sciences)

2021 Disability Summit
April 13, 2021 – 10:15 AM-10:45 AM

Twitter: @JessicaC_2015
Email: jc2539a@student.american.edu


Endometriosis is a hidden disability that disrupts multiple aspects of life—school, work, social, etc. Women living with endometriosis have often felt misunderstood and unsupported by their doctors, family, friends, teachers, and colleagues. To better understand their experiences with the condition, this exploratory study seeks to understand, 1) How women with endometriosis use Facebook to portray their experiences, and 2) What words, phrases, or images do they use to convey those experiences? To answer these questions, virtual participant observation was conducted in an online support group for women with endometriosis. Three central themes emerged from the observations of the group: dealing with mental and physical health challenges, learning to understand and manage the symptoms in relation to endometriosis, and understanding disease as part of identity. By examining the virtual lives of women living with endometriosis, we can bring light to the challenges and the issues they face and how they use social media for support.

Presentation (.ppt)

Presentation (.pdf)


Jessica Chaikof is a master’s student in the Sociology Research and Practice program at American University in Washington D.C. Her research interests lie within the realm of medical sociology with a special focus in chronic illnesses, disability, and accessibility in higher education. She has a bachelor’s degree in sociology from Wheaton College in Norton, Massachusetts. During her time in undergrad, she co-founded WheAccess, the first club on campus to support students with disabilities and to educate all members of the college community. Her eventual goal is to obtain a doctoral degree in sociology that will allow her to continue pursuing this research in accessibility and disability.