Emory Report

 December 8, 1997

 Volume 50, No. 15

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.

-Linda Klein

Return to December 8, 1997 Contents Page