The Invisible Kingdom: Reimagining Chronic Illness

the illness was not just my own; the silence around suffering was our society’s pathology.

a terrible anxiety attends chronic illness. Over time, it becomes difficult to untangle the suffering from symptoms like pain from the suffering inflicted by the anxiety over the possibility of more pain, and worse outcomes, in the future.

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

the system as a whole remains ill-equipped to deal with chronic illness. It’s technologically proficient but emotionally deficient, much better at treating acute problems than chronic ones: for every instance of expert treatment, skilled surgery, or innovative problem-solving, there are countless cases of substandard care, overlooked diagnoses, bur

in my fatigue and pain I couldn’t find the words to make myself legible to others. (And I still have not found them. This text is full of silences and vagueness and lacunae: when I write “brain fog,” I imagine that your mind slides over the idea, unless you, too, have suffered from it.)

But I was also startled by the profound discomfort I felt, especially in hospitals. Doctors at times seemed brusque and even hostile toward us. The lighting was harsh, the food terrible, the rooms loud and devoid of comfort. Weren’t people there to heal? This did not appear to matter. What mattered was the whole bureaucratic apparatus of “care”: th

Autoimmune diseases have biological markers, but they come and go, and patients’ flares can be exacerbated by stress. Such diseases require us to think about illness in a more complex way than we usually do, a more complex way than twentieth-century medicine did, since it was, at heart, based on the idea that all bodies respond roughly the same way

modern medicine’s stigmatization of patients who lack clear-cut test results continues to be a chief shortcoming of the American health care system, which, in its understandable embrace of authoritative answers, struggles to acknowledge what it does not know.

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