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?

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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.

Social contexts can also shape how people experience illness. Societies committed to meeting citizens’ basic medical needs treat health care systems as, at least to some extent, responsible for supporting the health of citizens.  Those that allow financial or other incentives to be offered to individuals who exhibit certain health behaviors (e.g., maintaining a certain BMI), or allow for penalizing those who fail to do so, treat individuals as at least partly personally responsible for their health status.

Individualism structures a society’s understanding of who bears responsibility for health in cases where there is a tendency to focus primarily on individual agents/patients and their choices and actions when determining responsibility for health or illness. In contexts where this tendency is strong, individuals are likely to be understood to be personally responsible for being healthy, and to be expected to make choices that will maintain their own health or manage their own illness. A person with illness might struggle to reconcile such societal expectations about her responsibility for her own health with her experience of becoming ill. A person with illness is expected to take responsibility for her own health, but her material conditions may not make it possible for her to meet her own health care needs alone. Illness is a burden that she did not choose, and may not be able to cope with alone. Further, there is no guarantee that with enough effort, recovery from illness will be achievable or permanent. Alongside other ways in which illness may be disorienting, experiencing this tension between what is expected and what is in fact possible to accomplish may make it difficult to know how to go on.

Illness is not always disorienting, but when it is, societal expectations about personal responsibility for health may contribute to the experience of disorientation. More information is needed about where these expectations exist, how they are communicated, and what effects they have on the lives of those with illnesses. My point here is to suggest that positioning health as the personal responsibility of individuals may be one factor in making illness disorienting for them, and that this possibility is in need of further investigation. Such investigation must not only focus on the experiences of individual patients, but also include analysis of the conditions within which individuals and communities pursue health.

Research in this area could have the benefit of investigating how an individual’s social positioning could make his illness disorienting in different ways or to different degrees. The expectation that any individual could make choices that would fully and permanently ensure their own health is unrealistic for everyone. Individuals with more privilege (for example, based on gender, race, class, sexuality, citizenship, or ability status) can, in some cases, more easily access health care resources needed to manage illness (e.g., consistent access to quality health care). As such, their privilege can make them appear to be (or actually be) more able to achieve health than those with less access. Having greater access to health care resources may then affect the extent to which, or for what reasons individuals find illnesses disorienting.

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Ami Harbin is an Assistant Professor of Philosophy and Women and Gender Studies at Oakland University (Michigan).