The Invisible Kingdom: Reimagining Chronic Illness

by Meghan O'Rourke

Contemporary medicine prides itself on patient-centered care, but it is startlingly inattentive—even actively indifferent—to patients’ emotional needs. For patients with chronic illness, with its upheaval of life, this indifference poses a particular challenge. In chronic illness, the patient does not have a problem that can be solved quickly but a disease to be managed, physically and psychologically. Such illnesses can be intractable, messy, mysterious. And doctors don’t like to manage; they like to fix. Medical education emphasizes solutions and is often “equated with cure,” according to a 2005 study of doctor-patient relationships in chronic illness. Unfortunately, “the treatment of chronic disease conflicts so fundamentally with these expectations that it tends to be neglected.” Indeed, a 2004 Johns Hopkins study found that nearly two thirds of doctors surveyed felt inadequately trained in key aspects of care of the chronically ill.