For the chronically ill, life is not measured in weeks and months: it is measured in hours, in the number of pills swallowed, in time spent suffering, in wondering what if? and why me? It’s harder when your illness is invisible; people question its true debilitating nature -- they even doubt that you are sick.
All of the people portrayed in this series live with Inflammatory Bowel Disease (Crohn’s Disease or Ulcerative Colitis), a chronic, often incapacitating autoimmune disorder causing inflammation of the digestive tract. IBD is considered an impolite subject, and as a result, it is misunderstood, even though it affects one out of every 200 people in the United States. I was diagnosed with Crohn’s Disease at age ten, my older sister at 12, my younger sister at nine, and my mother in her 50s. Younger generations hope to carry on the legacy of their families, but what about those whose genetics are forever marred by illness?
I have known many of the young adults represented here since my diagnosis when we met at an annual weeklong camp for children with IBD. Through the people I met, I learned that everyone’s experience with the illness is different. I saw that pain and illness are neither objective nor easily understood by those outside of the community. There is no written language for pain and illness, but I have developed a visual language in these portraits.
These photographs represent my understanding and interpretation of living with a chronic illness. Life can be a daily struggle -- it’s exhausting when your body attacks itself continuously. In this collection of photographs I have created a visual language for lifelong illness, pain, and the strength needed to overcome these obstacles. I opted for the strength of visual and auditory pieces rather than relying on the written word. By taking portraits and recorded stories of those living with chronic illnesses, I am exploring the sickness and pain of other’s, as well as my own struggles. By looking at these portraits and hearing these stories, people can begin to reexamine their assumptions about IBD and illness in general. What does it mean to live in the world of the ill, but still be considered one of the living, the healthy? Any one of us could ask: “Do I look sick to you?”