Perspectives

802 www.thelancet.com Vol 373 March 7, 2009

We live in a world of ambient risk. Most of us in the developed
world are part of ageing populations, characterised by chronic
diseases, managed but not banished. When we imagine our
futures we are necessarily forced to think about disease: how
we will live with it and how we will play the roles dictated by
its various narratives. It is hard not to contemplate future
illness, especially when we are assailed on television and in
newspapers and magazines with warnings about weakened
bones, compromised arteries, impaired sexual function, and
the ominous presence of precancerous lesions. Innovation
in screening and diagnosis propel many of us into a world of
anxious patienthood, while promising, paradoxically, to allay
our consequent fears of the immanent cancer, cardiovascular
disease, or diabetes gestating silently in our bodies.
Much of this is new. Our great-grandparents expected to
die of a generalised and gradually debilitating condition they
called old age, if they did not succumb before they reached
such ripe years. Today we expect to cope with, and ultimately
die from, the eects of a specicordinarily chronicdisease
acting its natural history out in our bodies. Our ancestors
thought dierently about impending illness. Perhaps most
important, they faced the everyday onslaughts of acute
infectious disease and occasional terrifying epidemics that
threatened whole communities. The tuberculosis that wasted
and killed year-round and the uxes and ts that attacked
babies every summer were a kind of experiential back-
ground noise, part of any communitys reckoning with the
individually random yet collectively predictable incursions
of sickness and death. Few families had never experienced
a tense and watchful sickbed vigil in which a parent or child
hovered between life and death. Every thoughtful adult was
an expert in interrogating his or her own body and those
of family members. Abnormal urine and faeces, a coated
tongue, a loss of appetite, or disordered sleep could provide
clues to health and disease; only in alarming or exceptional
circumstances was diagnosis outsourced to a physician.
Sickness was labile and individual, an aggregate of
constitution, circumstance, and behaviour. A cold might
shift into bronchitis, bronchitis into pneumonia, or might
linger in the form of a consumption. Such holistic notions
shifted in the 19th century. Ailments were increasingly seen
as distinct entities, construed as existing in archetypical form
outside their manifestation in any particular man or woman.
Each disease entity exhibited a characteristic clinical course
that was understood as the consequence of an underlying
somatic mechanism. When we think today about individual
health and collective health policy, we nd it di cult to do
so without the orienting help of such categories.
Such pathological entities are important not only because
they are valuable heuristic concepts, guides to further
research and increased understanding of processes within
the body, but because they exist in social space with an
increasingly dense substance of thresholds, algorithms,
screening practices, treatment protocolsnot to mention
reimbursement schedules and drug-company research and
marketing strategies. In a world of ever-expanding screening
and often symptomless disease, the sick role is increasingly
contingent, constituted by diagnostic procedures and
agreed-upon conventions negotiated and renegotiated
outside the patients body. A problematic mammogram
or raised cholesterol enlists a previously healthy woman
or man into the world of sickness. Despite being the
targets of recurring academic scepticism, sharply bounded
disease entities retain their ability to manage and mobilise
individual anxiety, to shape clinical encounters, and to order
and rationalise administrative and therapeutic decisions.
During the 20th century, the burden of our health anxieties
in developed countries has thus shifted in emphasis to
chronic diseases, behavioural illsmost conspicuously
depression in its protean varietiesand dementia. Fear of
infectious diseases has in general assumed a less prominent
and often rhetorical role in the west, while continuing to be
a scourge in many developing countries. Cancer has been
one of the most visible of such chronic ills. By the late-18th
century it was recognised as an inexorable nemesis. Once
symptomatic, the outcome was foreordainedthe tumour
alien, tragically embedded, and relentless in its uncontrolled
growth. Logically enough, early and mid-20th-century
anticancer eorts turned on early detection, on educating
the public to be aware of breast lumps, unnatural appearing
moles, or abnormal bleeding. The American Society for
the Control of Cancer sought, for example, to inform both
physicians and laypeople of the need to identify and to treat
precancerous conditions in a timely way. In retrospect,
such educational eorts probably had only a limited eect
on the ultimate fate of some cancer patients, but they do
illustrate the emotional logic of focusing on activism and
the fostering of a hope based on a narrative of cancer as a
monolithic entity spreading inevitably and unavoidably
over time. Surgery seemed the only way to pre-empt it.
Diabetes played a rather dierent but complementary role.
Diabetes was traditionally understood to be constitutional
and progressively fatal; its characteristic sweet and insect-
attracting urine had indicated for centuries that some
fundamental metabolic process had gone awry. The
introduction of insulin only underlined the assumption
that a discrete and peculiar biochemical nemesis lay behind
this frightening disease. Yet diabetes in the 20th century
constituted a dierent story from that of cancer. It is a story
of disease altered and managedat individual and social
The art of medicine
Managed fear
Perspectives
www.thelancet.com Vol 373 March 7, 2009 803
cost. After World War II, mass screenings urged for hidden
diabetes disclosed a dramatic increase in type 2 diabetes. As
in the cases of hypertension and raised cholesterol, we have
in this ubiquitous entity created what I have called a proto-
disease: one that inhabits the increasingly well-populated
borderland between risk factor and manifest illness.
Each diagnosis of hypertension, of elevated cholesterol, of
impending glaucoma, of prediabetes places an individual
on a kind of pathological slippery slopea protagonist in
a narrative of declension. It is not surprising that men and
women should want to step out of that narrative, or at least
alter its trajectory by making the propitiatory ritual libations
or applications of Lipitor, Zocor, Xalatan, or whatever drug
their physician prescribes. Cancer is, of course, particularly
feared and fearsome and screening for precancerous
lesions has also metastasised in the past half-century.
Mammography and colonoscopy have become routine
components of medical practice in developed countries. And
social critics and students of health-care delivery have already
begun a nuanced cost/benet evaluation of this trend, a
kind of buyers remorse as we contemplate a downside of
unnecessary surgery, and anxiety-provoking false positives.
The growth of genetic screening in the past generation
has added a new layer of expectation, complexity, cost, and
ambiguity to this situation. We seek predictive reassurance
but often create new uncertainties. Raised cholesterol,
prediabetes, hypertension, BRCA mutations have shown
themselves to have enormous social visibility. It is not only
because they point to real risks and mobilise predictable
fears, but because powerful groups have a stake in their
proliferation. I refer not only to pharmaceutical companies
alert to shareholder prots, but to health-care administrators,
public health workers, and disease advocates who have
bought into the doctrine of screening, risk management,
and therapeutic pre-emption. Physicians too have largely
come to accept the usefulness of this paradigm, even when
they deplore diagnosis creep and suspect the motives and
tactics of the pharmaceutical industry. But ordinary men
and women are stakeholders too; we seek the assurance of
disease prevention through early warning and subsequent
altered behaviourwhether taking a pill, altering our diet,
or adopting an exercise regime. We are almost all of us co-
conspirators in this way of conceiving disease. It is one of
the prices we pay for the medical care we, generally, value.
It is tempting to put this argument into a larger
historical framework, to see changing disease incidence
and knowledge as an aspect and indicator of western
societys larger move from a traditional face-to-face
village world to a technologically oriented, bureaucratically
structured society in which we are born and die in hospitals,
not our own beds, where we are treated episodically by
subspecialists, and where knowledge has become intensely
specialised. Just as risk and disease have been conated, so
have prevention and treatment, diagnosis, and prognosis. It
is easy enough to construe contemporary disease categories
and treatment protocols as a variety of iron cages into
which we have been cast by history. But such observations
merge seductively with an antimodern jeremiad that
attens and homogenises both past and present.
Managed fear is everywhere, but it is neither unavoidable
nor uniform. Sickness, pain, and disability remain at some
level individual and idiosyncratic. We can choose, for
example, to avoid the behavioural admonitions built into
the guidelines of chronic disease management. Some
of us use alternative medicine; others opt out through
what is euphemistically termed non-compliance or non-
adherence. We may eat the guilt-suused cheeseburger or
smoke the equally stigmatised cigarette. A woman may
opt for a bilateral mastectomy or simply choose to live with
what is a heightened statistical risk and not a disease. There
are dierent ways to balance nemesis and contingency;
and even the same choice may reect dierent emotional
orientationsone mans fatalism is anothers rational
choice. Health and illness cannot be reduced to morally
neutral terms; we are commended for ghting cancer,
for mastering impulse, and adhering to medical discipline.
We can also blame ourselves and judge others for actions
that seem in retrospect to have caused sickness; there is, for
example, a comforting order in the link between cigarette
smoking and lung cancer. Disease trajectories are narratives
and thus stages on which we perform as individuals and as
moral actors. In the wests bureaucratic and technology-
dependent environment it is ironic that in some ways
pain, sickness, and incapacity remain a nal and ultimately
inaccessible citadel of individuality. We are shaped by our
diagnoses, but we are not reduced to them.
Charles Rosenberg
Department of the History of Science, Harvard University,
Cambridge MA 02138, USA
rosenb3@fas.harvard.edu
Further reading
Aronowitz RA. Unnatural
History: Breast Cancer and
American Society. Cambridge
and New York: Cambridge
University Press, 2007.
Feudtner JC. Bittersweet:
Diabetes, Insulin, and the
Transformation of Illness. Chapel
Hill: University of North Carolina
Press, 2003.
Peitzman SJ. Dropsy, Dialysis,
Transplant: A Short History of
Failing Kidneys. Baltimore: The
Johns Hopkins University Press,
2007.
Rosenberg CE. Our Present
Complaint. American Medicine
Then and Now. Baltimore: The
Johns Hopkins University Press,
2007.
Timmermans S, Berg M. The
Gold Standard: The Challenge of
Evidence-based Medicine and
Standardization in Health.
Philadelphia: Temple University
Press, 2003.
The Hospital Ward by Cesare Ciani
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