CHAPTER 7 â THE EXPERIENCE OF BEING ILL
Illness, sickness and disease
ï Disease â that which is diagnosed by a physician; located in specific organs or systems in
the body; curable through particular biomedical treatments.
ï Illness â personal experience of the person who acknowledges that he/she does not feel
ï Sickness â social actions taken by a person as a result of illness or disease e.g., taking
meds, resting etc.
o Patients feel illness and act sickness, while physicians diagnose and treat disease.
ï Klawiter studied the variations in identities constructed by breast cancer activists in US.
ï There were 3 distinct constructions of breast cancer causes and relevancies by the 3
different social movements organized in the interest of:
1. Raising funds for breast cancer research ï activists valorized heteronormative identities
and promoted early detections.
2. Protesting cancer-creating industries ï emphasized broader womenâs health movement
along with other womenâs cancers. Expressed opposition to institutionalized medicine
and promoted social and economic equality.
3. Environmental causes of and supporting those living with breast cancer.
Social value of the patient and death
ï Presumed social value of a patient affected the type of death care the patient received
ï Poorer people, less functioning people, and people who were less valuable because of
race, ethnicity or age were given less aggressive treatments in general hospitals.
ï In the face of controversial options, the HCP continue to distinguish between people n the
basis of their social viability or their ability to contribute according to their set of values
to society and on the basis of attempting to avoid a lawsuit.
ï Social evaluations of psychiatric patients also affect the types and quality of treatment
Cultural variations in the experience of being III
ï Westerners tend to see illness as empirically caused and mechanically or chemically
ï Research focus on psychoneuroimmunology, stress, social capital etc reflects a return to
an integration of the body, mind and spirit for understanding health.
ï Most non-Western countries view illness as a combination of spiritual, mental and
o Patients in NYC from Jewish and Italian backgrounds responded emotionally to
suffering and tended to dwell on their painful experience.
o Italians saw pain as something to be rid of and were happy once a way to relieve
their pain was found.
o Jews were mainly concerned with the meaning of their pain and the
consequences of their pain for their future health.
o Old Americans and Irish reacted stoically (indifferent).
Popular conceptions of health, illness, and disease
ï Medicalization from above ï definitions of reality that are the result of developments in
ï Medicalization from below ï the acceptance and the rejection of such definitions on the
part of lay people. ï Illness as carelessness and failure ï health promotion built on assumption that
individuals are responsible for staying well; thus are held accountable for their actions.
o Medical care system based on aggressive intervention once disease is detected.
Assumption is that the earlier the detection, the better.
o To be a good and moral person is to be healthy.
ï Illness as a choice ï we choose when we want to be ill, what type of illness weâll have,
how sever it will be and how long it will last.
o It is a result of thinking and feeling as well as of bodily processes since body and
mind are connected.
o We choose to be ill to allow for time out from our routines.
o Psychoneuroimmunology and psychosomatic medicine research attests to
prevalence of this belief.
o Carl Simonton ï earliest contemporary popularizer for the role of the mind in
both sickening and healing of body in cancer
ï§ Cancer is disease that arises from a sort of emotional despair.
ï§ Once patient understands the reason for the choice of cancer as a way of
coping with a personal problem, he or she can confront the problem on a
conscious level and seek solutions through various methods:
ï· Systematic use of imaging â conjuring p mental images of cells
e.g., people directed to imagine their cancer cells as black ants
and their healthy cells as knights.
o Hypothesis: the more powerful the imaging of the
anticancer forces, the more likely it is to be effective in
ridding the body of the disease.
o Effective imaging may:
ï§ Increase longevity
ï§ Moderation of symptoms including pain
ï§ Increased sense of well being
ï§ Autonomy and control
ï§ Improves quality of life
ï§ At times, remission of the disease.
ï· Journaling, art
ï· Group and individual psychotherapy
o Research results ï possible health benefits of individual
and group therapy, informational and educational
interventions, guided imagery, and CBT for people with
ï Illness as despair ï common type of emotional experience among majority of cancer
patients predated the development of the disease e.g., long-standing unresolved grief over
loss of someone close, loss of job etc.
o Understanding their grief and expressing feelings of sadness and anger became
pathways towards being healed.
o Cousinâs story ï anatomy of an illness as perceived by the patient: his story
focused on 3 aspects of his systematic pursuit of salutary emotions:
ï§ His partnership with his doctor
ï§ His doctor agreed to his request for massive intravenous doses of vitamin
C, in which cousin believed. ï§ Laughter (most important) â deeply relieved his pain and made him feel
ï· Each episode of laughter decreased the level of inflammation in
his connective tissues.
ï§ *His idea is that the mind and body are a single entity; positive change in
one can lead to healing.
ï Illness as secondary gain ï may provide an opportunity or permit someone to behave in
ways he/she would like to but otherwise would feel constrained from doing.
o The question of secondary gains has been researched on welfare mothers.
ï§ Whether and in what situations mothers on welfare would be likely to
claim that they were ill.
ï§ Hypothesis: illness could be seen as a legitimation or acceptable
explanation for failure.
ï§ Being on welfare was thought by a substantial number of welfare
recipients to be the result, and also a continual reminder of a personal
ï§ Researchers found that women on welfare who felt that they had little
hope of changing their status were more likely to use illness as their
explanation for being on welfare than women ho hoped or expected to
move off welfare.
ï§ Illness can be thought of as providing secondary gains in this case.
ï Illness as uncertainty ï people who live with chronic diseases live in a state of
uncertainty and the possibility of or the belief that they are at risk.
o Because of the prevalence of disease remission or chronicity, some have said we
live in a remission society.
o Perception of being at risk can cause ongoing suffering ad a feeling of emotional
dissonance from ordinary others in cancer patients.
ï§ 1 in 900 people aged 18-35 is a survivor of childhood cancer
ï Illness as a message of the body ï expression of a unique person at a particular point in
time and engaged in a special set of circumstances.
o Health and illness both exist in a person continuously in a state of dynamic
o Symptoms are thus not signs of illness but indications that the person is
responding to a challenge and is engaging in a healing crisis.
ï§ It is a manifestation of what has been happening for a time but has been
repressed and therefore unnoticed.
ï§ Fever, rash, inflammation, coughing etc are revelations of a deep
disturbance of the whole person.
o This perspective is consistent with psychoneuroimmunological research.
ï Illness as communication ï people send messages through the way their bodies are
functioning. It sends a message that one part of the body is alienated from the self.
o Through particular sets of symptoms or particular kinds of illnesses, people
convey messages about themselves.
o Different diseases express different frustrations.
ï§ E.g., rheumatism, disability affecting muscles and joints may express the
frustration of a person who once liked to be very active.
ï Illness as metaphor ï cultures bestow meanings on various illnesses. Likely to be related
to illnesses that have no clear or obvious cause or treatment.
o Cancer in 20 century
o TB in 19 century o Metaphors attached to diseases are often destructive and harmful and have
punitive effects on the patient because they exaggerate, simplify and stereotype
the patientâs experience.
o They may function as stigma or to reinf