The Invisible Kingdom: Reimagining Chronic Illness

You cannot muscle your way to health when you are chronically ill. Rather, one way of coming to terms with an amorphous systemic disease is recognizing that you are sick, that the illness will come and go, and that it is not the kind of illness you can conquer.

Concerned about “the thousand intricate problems . . . which perplex those who struggle to-day in our teeming city hives,” the neurologist Silas Weir Mitchell wondered, “Have we lived too fast?” He published Wear and Tear; or, Hints for the Overworked not in 2021, but in 1871. Mitchell is one of the men responsible for diagnosing an epidemic of hys

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

Positive thinking in the face of illness purports to give us back a modicum of control. It suggests coherence in a chaotic world. It makes willpower and mindset meaningful again—even though willpower is one of the things that disease can prove to be a false (or at least overdetermined) construct.

To have the dignity of one’s reality: this, I realized, was why I worked so hard to find language to tell my story. I wanted to show how the emphasis on the psychological nature of chronic illness in a culture that pathologizes the failure to “overcome” robbed people of grace, while instructing them to suffer their illness with grace.

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.

I was alone because of the ways that we have allowed ourselves to believe that the self, rather than community, must do all the healing.

When we suffer, we want recognition. Where science is silent, narrative creeps in.

My experience of being ill led me to see that our bodies may feel autonomous, but we all live in the nexus of radical interconnection.