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The social and cultural aspects of chronic illness, focusing on how individuals come to view themselves as chronically ill and how illness affects their lives. It also discusses the importance of patient perspectives and the role of social scientific studies in understanding chronic conditions. Topics such as the disruption of identity, managing illness, and the impact of stigma.
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S/A 4071: Social/Cultural Aspects of Health and Illness: Class 15: The Lived Experience of Being Ill 2:
Social scientific studies of illness took off 40 years ago when ethnographers found structural theories failed to account for how people lived with/made sense of chronic conditions (e.g. Parsons’ “sick role”).
Research moved toward inductive, subjective analysis (e.g. of patient’s actively negotiating their roles, careers, managing stigma, selves & identities) Becoming & Being Ill:
Prior beliefs about health & illness vary by culture & group. These inform our bodily experiences, often in an ideological way linking institutional practices to the individual (i.e. how to handle illness) Example: handling leprosy by Ethiopians vs. Americans.
Medical practitioners beliefs/definitions of illness affects individual/collective life: (1) masks social roots; (2) marginalizes sufferers (e.g. Gulf War syndrome); & (3) creates personal, economic, & social consequences (e.g. identity losses, stigmatization)
Individual accounts of health & illness reflect identity & reality claims for specific audiences & purposes (e.g. more detailed private vs. public accounts when wary of consequences of being branded “ill”)
Individual accounts also draw upon cultural values & individual
intentions in certain circumstances
Illness as Biographical Disruption vs. Continuity
Chronic illness often disrupts one’s life, evoking themes of disruption & loss of control
Becoming ill poses 3 major problems for people:
(1) Making sense of bewildering symptoms (e.g. defining one’s Condition) (2) Reconstructing order (efforts to manage illness & regimen) (3) Maintaining control over life (concrete daily actions & regaining coherence of self/one’s world)
Definitions of illness may be rejected, challenged, negotiated & redefined in the process of diagnosis between practitioners & patients (e.g. some patients symptoms are discounted as unlikely given age, other patients push hard for a diagnosis)
Defining illness & being diagnosed occurs in several ways:
(1) having a crisis (may force a diagnosis, or individual may for a time define it away as an exceptional episode or interpret it through lay beliefs about aging or stress); (2) comparing self with sick people (upward/downward comparisons); (3) redefining feelings or behavior as symptoms; & (4) receiving test findings or medical pronouncements
individualized regimens - not always welcomed by doctors!)
Stigma & Stigma Control:
Experiencing stigma is a common consequence of chronic illness, a social threat to one’s identity. It separates one from others, often becoming a “master status” that taints all one’s statuses & identities
Stigma may be enacted by others, or felt & feared by the ill in the event that they are “discovered” (e.g. epilepsy)
Guilt & shame increase when chronically ill people view themselves as socially incompetent (e.g. colostomy patients & basic social rules re: bodily functions)
Enacted stigma dramatizes difference & magnifies loss, often resulting in restrictive information management/interaction choices with other to preserve self
*Concealment is much harder for people with visible disabilities. Efforts toward prior identity preservation fail in direct proportion to the degree & extent of visible disability
Self & Social Identity:
Serious chronic illnesses alone may necessitate redefining, rethinking how one lives/ who one is becoming - as self & social identities are intertwined with daily activities in a context where social & other resources to preserve old selves/identities may be shrinking
Then again, this “loss of self” may enable individuals to jettison old identities in a search for deeper meaning
Implications of Studying the Experience of Illness:
Such research has implications for: (1) institutional changes / health policy reform; & (2) further research.
A new model for chronic care should have strong participatory/ educational components unlike the current isolating, unidirectional regime that is breaking down in a context of more chronically ill people
A social, community-based model of care would begin with the chronically ill person’s situation as the unit of concern, not the disease process within the person
As understanding increases in a context of increased information & options, poor service, blame & conflict will likely decrease
This will also give individuals more information, coping choices, reduce isolation, improve their sense of control, improve health outcomes, reduce non-compliance, etc.
Research on the experience of illness is promising. Future studies should: