Beyond the Diagnosis: A Photographic Inquiry of Chronic Illness

Abstract

The old adage for authors is to ‘write what you know,’ and I believe the same can be said for any other artistic medium. I was diagnosed with Irritable Bowel Syndrome about four years ago and it has been a life-altering experience for me. I now have to shape the rest of my life around the management of a medical condition that forces me to locate the nearest bathroom whenever I go somewhere new, carry medication with me at all times, and cook everything I consume. I have struggled with this new way of life, and wanted to help remove stigma while building connections with others. It finally occurred to me that I could use my passion for photography to document the experiences and stories of myself and others with chronic illness. The main portion of this project is a website, www.monroephotos.com, that shows photographs I made with each individual as well as a portion of the story behind their illness. I struggled to give a name to this project but I ultimately decided on Beyond the Diagnosis because it implies that there is a story to tell after a diagnosis of chronic illness, and that an authentic life can be lived in the face of illness. And, as I will outline in the paper component of this project, there is real world evidence and scholarship that examines the need for a reclaiming of the self after facing a life-altering diagnosis. The project provides a window into the lives of five survivors of chronic illness beyond what is detailed in their patient charts – they are more than their diagnosis. With the contributions of my collaborators- Kevin, Eleri, Sam and Alex, as well as my own story- the website and paper explore the ways in which chronic illnesses impact the daily lives of each participant.