The search for legitimacy and the "expertization" of the lay person: The case of chronic fatigue syndrome

Some "diseases" appear to be recognized first by sufferers. At times these diseases may be disclaimed by medical doctors and elusive to scientific categorization and description. In these cases sufferers may organize themselves together in support groups and lobby for money to finance the discovery of diagnostic markers that would legitimate and medicalize the constellation of symptoms that they experience. Chronic fatigue syndrome is such a disease; and it is characterized by varied and changing symptomatology. Its diagnostic markers are in the process of being refined. Presently, its diagnosis primarily originates in reports of subjective experience of extreme fatigue. Oftentimes people diagnose themselves after attending a support group and find a doctor through a support group network who believes in the disease. Sometimes, people then return to their own family doctors with information and try to teach their doctors about what they believe to be the nature of their disease, its prognosis and treatment. Through such paths as described in the paper, patients become "experts": they may often know more about the illness than doctors and non-suffering others. This paper moves beyond the experience of chronic illness to describe the processes through which people seek confirmation and legitimation for the way that they feel and in a sense become the "experts."