The Invisible Kingdom: Reimagining Chronic Illness

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

To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living.

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.

I felt a prickle at the special horror of being not only ill but also marginalized—your testimony dismissed because your lab work fails to match a preexisting pattern.

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

This is the real tragedy of our cultural psychologization of diseases we don’t understand: the ways such dismissals leave patients to suffer alone, their condition turned into a character flaw.

Attempting to reduce pain that was context dependent to a number just made it clear that there was no way to make this invisible symptom legible to others. And the poet in me found all the metaphors for pain to be limited. “Burning,” “tingling,” “stabbing”—these words did little to describe pain’s reality, which ebbed and flowed according to its ow

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.

This is the real tragedy of our cultural psychologization of diseases we don’t understand: the ways such dismissals leave patients to suffer alone, their condition turned into a character flaw.