The Invisible Kingdom: Reimagining Chronic Illness

When I felt off, it was my fault, a sign of some internal weakness, a lack of moral fiber, a crack running through the integrity of my being. “It is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped,” Sontag writes. Indeed: despite all my efforts to think objec

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.

“Physical pain does not simply resist language but actively destroys it,” writes Elaine Scarry in The Body in Pain. “To have pain is to have certainty; to hear about pain is to have doubt.”

The bigger problem, though, is that all these hoops made it much more likely that I would just give up or fail to follow through. At times I did. When I later asked Jack Cochran, the former executive director of the Permanente Federation, what happens to patients who don’t have the energy or the means to persevere in connecting their disconnected d

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

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

When you’re sick, the act of living is more act than living. Healthy people have the luxury of forgetting that their existence depends on a cascade of precise cellular interactions. Not you. “Farewell me, cherished me, now so hazy, so indistinct,” Daudet writes—a line I now often thought of.

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.

In this sense, we are misled by metaphor into seeing personal significance where there may be merely accident—or, indeed, systemic causes.