Contested Illnesses

The term contested illnesses conveys perceptions of this set of maladies. Such illnesses are ones that are controversial. In short, their nature and cause (or causes) are considered contentious and thus are debated by scientists, practitioners, and/or members of the general public. In other words, the existence of such illnesses is questioned by medical personnel and/or laypeople.

There are several examples of such illnesses. Among the most common are chronic fatigue syndrome (CFS), multiple chemical sensitivities syndrome (MCS), Gulf War syndrome (GWS), fibromyalgia, and Morgellons disease. Other contested illnesses include environmental causes of asthma, especially in children, and breast cancer.

Contested illnesses have several commonalities. They lack identified biological causes and confirmatory diagnostic tests. They also tend to involve a variety of symptoms. Furthermore, beyond disagreement surrounding their existence or potential causes, there is disagreement over treatment options and approaches. Some scholars characterize contested illnesses as having five characteristics. The first is questionable status as a legitimate illness. The second is an indeterminate cause. The third is an unclear approach to treatment. The fourth is that their diagnosis interrelates with other conditions and includes interlinked comorbidity factors. The fifth is disputed classification by medical and/or legal experts and organizations.

Contested illnesses create a Catch-22 of sorts. Lacking research evidence and scientific agreement, health care providers remain skeptical. Simultaneously, difficulty in studying such illnesses makes scientific inquiry challenging. But linkages between public opinion and allocation of research funding make advocacy efforts important. Such linkages evidence the important role of health communication.

Often seeming like separate domains of human existence, medical science, social activism, and public policy are interrelated. As efforts are made to understand newly emerging conditions and scientific studies are undertaken, a variety of stakeholders, ranging from patients and physicians to advocacy groups and insurance companies, may quarrel over the existence of particular conditions, underlying causes, and treatment plans.

Both epidemiological and social processes shape the landscape of illness definition. For a new illness to emerge and be accepted on the public health agenda, a number of processes and steps are involved in both the scientific and public domains. This complex process typically involves identifying cases, raising public awareness through health education and health communication efforts, and conducting scientific investigations. For example, once the Food and Drug Administration approves a medication for a condition, evidence of and support for the condition is evidenced. In other [Page 257]words, medications and pharmaceutical companies play key roles in legitimizing particular illnesses through the social constructions that arise from their decisions and behavior.

Through the process of medicalization, particular medical conditions and outcomes are described and treatments recommended. Although previously constructed as a scientific process based on research findings and scientific agreement, medicalization is also influenced by social forces such as marketing and advocacy groups. The struggle to grapple with contested illnesses has illuminated the sociopolitical nature of illness definition and acceptance. As this struggle continues, it may further reform and democratize medical practice, research endeavors, policy making, and regulatory practice.