The Invisible Kingdom: Reimagining Chronic Illness

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.

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

Without answers, at my most desperate, I came to feel (in some unarticulated way) that if I could just tell the right story about what was happening, I could make myself better. If only I could figure out what the story was, like the child in a fantasy novel who must discover her secret name, I could become myself again.

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.

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”)?

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

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

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.

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.