Encounters with the Invisible

Book excerpt: While news stories tout the successes of molecular science, gene mapping, and high-tech interventions to treat disease, there’s another, untold story within today’s medical landscape. It is the story of the growing number of chronic, controversial illnesses--chronic fatigue syndrome, Gulf War syndrome, fibromyalgia, multiple chemical sensitivity--poorly served by today’s biomedical, pathogen-oriented approach to disease. With a lyric, incisive voice, Dorothy Wall blends the personal story of her struggles with CFS with a graphic sketch of the CFS terrain: the woeful federal response, patient advocacy politics, medical debates, environmental questions. Eighteen chapters explore a spectrum of issues. "Listening” conveys the impact on a patient when medical practitioners are deaf to her story, and posits listening as a moral act. "That Name” leaps into the minefield of controversy between and among patient advocacy groups, researchers, and the medical establishment over the power to define, name, and legitimize disease. "The Erotics of Illness” pulls readers to the intimate core of illness, with its upheavals, pain, and tenuous pleasure. "Staying Home” explores the meanings of enclosure for women and the struggle to find purpose and meaning in a reduced, homebound life. Personal drama merges with literary reflection, reportage, and medical history. An important investigation of what many are calling "postmodern” illness, Encounters with the Invisible offers a thought-provoking look at a controversial illness and the challenge to biomedicine it presents.