Seasick in My Own Skin: Reflections on Chronic Disease

"When I began life, cystic fibrosis (CF)-a genetic disease characterized by diminished lung function, poor growth, pancreatic insufficiency, salty skin, and numerous other symptoms-stowed away below deck, silently promising me the experience of living death. As Varilek and Isaacson put it, "A living death is a loss of something that is vital to how we define our place in the world. A living death shatters our sense of self and makes us question who we are.""

""The itching won't stop." "We need to call the clinic first thing tomorrow," my wife said. Malaise. Unstoppable nausea. Brain-scrambling migraines. Now this indomitable itch. Such has been my summer. These drugs often come with unfortunate side effects including: flu-like symptoms, migraines, nausea, brain fog, and even whole-body hives (in my case, anyway). The waves of side effects are as disorienting as the diagnosis itself. I am seasick in my own skin."

Cystic fibrosis manifested later in life, bringing malaise, unstoppable nausea, migraines, and an indomitable itch. Potent corrective medications produced flu-like symptoms, brain fog, whole-body hives, and recurring waves of disorientation. Medieval folklore and clinical history contextualize the illness as long-feared and stigmatized. The experience produced feelings of a 'living death' that shattered sense of self and prompted urgent reassessment of identity. The person faces the need to parlay with the disease and reclaim agency while managing unpredictable symptoms and medication tradeoffs. Daily life became a struggle between maintaining bodily function and enduring debilitating side effects.

Read at Apaonline