Meghan ORourke - The Invisible Kingdom: Reimagining Chronic Illness

The stories we tell about illness usually have startling beginningsthe fall at the supermarket, the lump discovered in the abdomen during a routine exam, the doctors call. Not mine. I got sick the way Hemingway says you go broke: gradually and then suddenly.

One way to tell my story would be to say that I got ill just after college in the late 1990s, when I began experiencing daily hives, dizziness, chronic pain, and drenching night sweats, long before any doctor believed I was sick. Another way to tell my story would be to say the illness took hold in the days after my mother died on Christmas Day of 2008, when I caught a virus, a debilitating fatigue overcame me, my lymph nodes ached for months, and I slid into an exhausted fog I attributed to grief. A month later, a doctor found that I had Epstein-Barr virus. Still another way would be to say that my illness became unignorable roughly three years after my mothers death, starting in January 2012, on a windy beach by a derelict hotel in Vietnam. Jim, my partner, and I were reading by the water when I noticed a strange rash on my inner arm, seven or eight raised red bumps arranged in a circle. It looks like Braille, I thought. But what was it trying to tell me?

The beach was a mess that day, scattered with the skeletal, alien branches of palm trees. I was in the grips of the discomfiting loneliness that can come when wild weather presses around you. Look at this, I said to Jim, who glanced at the angry, inflamed rash and said, Thats strange.

It was strangestranger than I imagined at the time. I had no idea then that I was living at the edge of medical knowledge. I had been intermittently unwell since I graduated from college in 1997 and now was getting steadily worse, like a person who cant swim moving step by step into deep water. But no one knew why. At first no one even believed I was illnot even I did, exactly. Trapped in a body that wasnt working, I embarked on a complicated and obsessive quest for answers. I was met by turns with cutting skepticism but also authentic concern from clinicians, friends, and colleagues. I eventually received an initial diagnosis of an autoimmune disease, but the diagnosis did not fully explain my symptoms. I tried many therapies and approaches toward healing during my search for understanding and effective treatment; in the meantime, the mysterious chronic illness I lived with got worse, not better, leaving me almost entirely unrecognizable to myself. As a child, I would wake early in the mornings with a sense of lifes promise as sun drifted into my bedroom, feeling joy at what lay ahead. After I reached my sickest, I dreaded waking, because my symptoms were always worse in the morning, and because I knew the day would be full of suffering without explanation.

In the grips of a malaise I had no name for, I needed understanding. I turned to literature, science, philosophy, doctors, healers, historians, researchers, and other patients. Along the way, I became interested in the contradictions and complexities of our medical system, in the obstacles faced by patients whose illnesses are poorly understood, and in the question of what might help me live