The Invisible Kingdom: Reimagining Chronic Illness

The less we understand about a disease or a symptom, the more we psychologize, and often stigmatize, it.

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.

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.

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.

I read everything I could by John Sarno, a New York physician who had written several best-selling books about his conviction that a great deal of back, neck, shoulder, and carpal tunnel pain is caused by repressed negative emotions—such as stress, anger, and anxiety—in people inclined to bottle things up.

In some ways, the distinction between normalcy and pathology is arbitrarily defined—as well as hard to measure.

the United States is in the midst of a crisis rooted not just in rising costs but in the very meaning and ethics of care.

What does it mean to have a disease doctors can’t diagnose? Why had it taken me so long to get answers in our hyperdiagnostic age, in which you can get a diagnosis for everything from shyness to sphenopalatine ganglioneuralgia (also known as “ice-cream headache”)?

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.