Some illnesses render symptoms
and patients 'invisible'
Members of academic, health care and patient communities gathered at
Emory Nov. 1 to take a closer look at "invisible" illness at the
interdisciplinary workshop "Seeing 'Invisible' Illness: Transforming
the Medical Gaze Through Lived Experience." There they discussed ways
of confronting conditions that do not fit neatly into the biomedical model.
Invisible illnesses include chronic fatigue syndrome, migraine headaches,
multiple chemical sensitivity, Gulf War syndrome and a painful muscular
condition known as fibromyalgia, said sociologist Deborah Barrett. These
are conditions that have no known cause, are not easily detectable by lab
tests and lack an established cure or medical regimen, she added.
Western biomedical models are based on identifying the causes of illness,
mainly through laboratory tests, she explained. "Because we don't have
tests to pick up a lot of these seemingly invisible illnesses, this contributes
to their invisibility and to their illegitimacy." The detection of
this group of illnesses usually rests on the testimony of the individuals
experiencing the symptoms. "For people with invisible illness,"
Barrett said, "symptoms are never invisible."
These illnesses are also difficult to treat because they're not well
understood, and treatments usually include a hodgepodge of approaches, she
said. "There has been little empirical study done on these types of
illnesses, and one reason is that they're difficult to measure."
Barrett, who has fibromyalgia, organized the workshop as part of her
fellowship with Emory's Center for the Study of Public Scholarship. At the
meeting-also sponsored by the Center for the Study of Health, Culture and
Society-she described ways that social science can make these illnesses
more visible and help patients treat, understand and better deal with them.
The workshop also included five other panelists from various academic
disciplines who reflected on their research and what it may offer to those
suffering from these conditions.
"The goal here is to use social science or the scientific method
not only to render the invisible visible, but to turn it into data that
can help us understand and improve our condition," Barrett said. She
suggests that people with these chronic conditions create a worksheet to
record daily information on their illnesses.
This data-"systematic information collected by the only people who
have access to the visible part of the condition"-can help guide treatment,
Barrett said. Keeping a diary can help a chronically ill person understand
the effect of various factors on the condition, adjust behaviors to maximize
positive outcomes and prepare for factors-like changes in weather-that can
affect the condition but cannot be controlled, she said.
Displaying an example worksheet to track symptoms and possible correlations,
Barrett stressed that personal worksheets should be easy to both make and
fill out. They should reflect the person's own experiences, questions and
conditions, she said. And they should be flexible so they can be changed
as the person's condition and questions change.
A second workshop, co-sponsored by the same groups, met Dec. 6 to discuss
"Emergent Illnesses: Health, Rights and Risks," which explored
social and cultural dimensions of emergent illnesses.
to December 8, 1997 Contents Page