Bioethics Blogs

The Disorientation of Illness

Ami Harbin considers how positioning health as the personal responsibility of individuals may contribute to the disorientation of illness.

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Being diagnosed with an illness, undergoing treatment, and being identified (by oneself and others) as sick can be very difficult. In my recent book, I argue that illness is sometimes disorienting. Like other disorientations, it can be a major, sustained experience that makes it difficult to know how to go on.

A great deal of empirical research I survey investigates the ways that illness can be disorienting.  A number of studies show how cancer, HIV, arthritis, heart conditions, ALS, organ transplants, and many other illnesses can make it difficult, for both people with illness and their loved ones, to know how to go on. As one participant in a study of women with lupus described her experience, “Illness is like an unexpected thief that attacks one’s life and destroys one’s life expectations. With illness, goals in life fade away…One has to painfully reconstruct one’s expectations.”

We know that serious illnesses are possible and, if we live long enough, increasingly likely.  Why, then, would we be disoriented by them?

A life event can be fully expected, or even deliberately pursued, and still disorient us. Even if one fully expects to face illness at some point, illness can still be a major, sustained experience that makes it difficult to know how to go on. We don’t yet know how to be a person with this illness, and we don’t yet know how our life plans will need to change in light of it.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.