Olivia Ayiku

In March 2023, I was diagnosed with Ulcerative Colitis, Irritable Bowel Disease, and Primary Sclerosing Cholangitis, a rare bile duct disease. In August 2023, I started my undergraduate studies at Duke University, and in September 2023, I began treatment at Duke Health. My condition was asymptomatic until I started to experience hot and cold flashes, loss of appetite, weight loss, bloating, nausea and vomiting, weakness, dizziness and faintness, night sweats, skin rashes, pruritus (itching of the skin), diarrhea, jaundice (yellowing of the eyes), abdominal pain, back pain, and moderate arthritis. Following my physicians' observation that three out of five ERCP (endoscopy and x-ray) procedures failed to relieve my symptoms, biopsies and scans revealed evidence of cancer in my bile ducts. Along with my other illness, I am currently battling cholangiocarcinoma, but I hope that one day I will remember what it's like to live pain-free and not have to constantly mourn my body.

I advocate because I understand what it’s like to be fighting your body, while feeling like you’re fighting to be heard. Despite the fact that I am medically literate and very well versed, there have been several instances where I felt misunderstood and left appointments dissatisfied because I didn’t want to be “the annoying patient." I learned the unfortunate way, that it’s almost too easy to get lost in the maze of names and files within the healthcare system. Although practitioners aim to treat patients as people, they can oftentimes only see us as patients, because they’ve been taught to treat the body and not the bearer of it. As a person with chronic illness and a Global Health & Public Policy major, I understand the barriers of receiving and providing optimal care. I hope to be the advocate for others that I needed the most.