The Invisible Kingdom: Reimagining Chronic Illness

Rather, as I got sicker that winter, I no longer had the sense that I was a distinct person. On most days, I felt like a mechanism that moved arduously through the world simply trying to complete its tasks.

One of the hardest things about being ill with a poorly understood disease is that most people find what you’re going through incomprehensible—if they even believe you are going through it.

To the degree that my quest had an object, that object turned out to be learning to live with uncertainty and incapacity.

As Virginia Woolf testified in On Being Ill, “English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. . . . The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language

If neurasthenic sensitivity was the hallmark of nineteenth-century invalidism, a kind of hyperpersonalized concern with wellness is the hallmark of twenty-first-century invalidism—a quality that lets the rest of us dismiss the invalid as fussy or oversensitive while we get back to our frenetic, endlessly connected, productive lives.

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

Ethical loneliness is what happens when wrongs are compounded by going cruelly unacknowledged.

Thinking about disease as a complex individualized consequence of genes and infections and stress and our immune systems means living with uncertainty instead of diagnostic clarity. The twentieth century was, as Sontag put it, “an era in which medicine’s central premise is that all diseases can be cured.” The twenty-first century will be an era in

One self disappeared, and a new, more dependent self emerged.