I’m reading, slowly, mostly on my phone on the subway, a worthwhile book called “The Illness narratives.” It’s stories of people with illness and how they’re treated by physicians and the medical system.  As you might imagine, not very well and not in a way that realizes presence, caring and attention help people heal, even when they can’t be cured.

I read this passage this morning and liked the sentiment:

“…as an anthropologist working in a dialysis center for patients with chronic kidney disease, Linda Alexander (1981; 1982) drew on Gregory Bateson’s idea of the double bind in social relationships to describe the conflicting demands placed on the seriously ill by their care givers: first, be independent, not passive and dependent, and be active in your care; but when you have a serious exacerbation, place yourself submissively in our hands, and we will blame you for what you did or failed to do to worsen your disorder.” Not unlike diabetes.

Alexander shows how that conflict disorients patients and creates feelings of guilt. This interfere with effective care and over time can demoralize patients and their families. Jeffrey Longhoffer (1980) describes much the same phenomenon among patients and their families in a bone marrow transplantation unit. Perhaps the problem is a structural component of high- technology, specialized treatment settings. Patients are expected to be active collaborators in their care in the outpatient phase; but when they are in need of emergency room or inpatient therapy, they are expected to revert to passive compliance with treatment controlled entirely by physicians and nurses.

This push/pull is a constant dance and strain, and one both patients and physicians are little aware of. Just another piece of the story living with chronic illness.