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Chronic Illness: Impact on Identity and Daily Life, Study notes of Sociology of Health and Illness

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.

Typology: Study notes

2011/2012

Uploaded on 01/07/2012

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S/A 4071: Social/Cultural Aspects of Health and Illness:
Class 15: The Lived Experience of Being Ill 2:
* Research on experiencing chronic illness emphasizes:
- how people come to view themselves as chronically ill
- how illness affects their lives
- the patients’ perspectives rather than practitioners
* 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
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S/A 4071: Social/Cultural Aspects of Health and Illness: Class 15: The Lived Experience of Being Ill 2:

  • Research on experiencing chronic illness emphasizes:
  • how people come to view themselves as chronically ill
  • how illness affects their lives
  • the patients’ perspectives rather than practitioners
  • 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

  • Chronically ill people rarely want to be invalids, but to be accepted as valid adults. Symptoms may be intermittent. Hence many delay seeking help to prevent losing valued roles, responsibilities & self images

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

  • Stigma potential is increased socially when the following characteristics are present: a high incidence within socially disparaged groups, compromised adult status, loss of bodily control, sexual transmission, possible pollution, odor & uncleanliness

Self & Social Identity:

  • Stigma is damaging, forcing unwelcome new ways of conceiving the self & situation
  • 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:

  • concentrate on the body, emotion & health