Illness behavior and the sick role in chronic disease: The case of multiple sclerosis

Abstract

This paper describes the findings of a study of the pre-diagnosis illness behavior of 60 individuals with multiple sclerosis. The findings of this study expand on those of prior research in the following areas: (1) more diversity and conflict occurs in lay and professional definitions of the initial symptoms of multiple sclerosis; (2) the doctor-patient relationship is characterized by greater definitional and role dissensus; and (3) multiple sclerosis patients take a more active role in the therapeutic encounter. On the basis of these findings, the applicability of prior research findings and concepts to the experiences of individuals with chronic illnesses such as multiple sclerosis are questioned. In addition, it is suggested that the structural-functional approach which postulates that the illness experience is governed by explicit normative expectations has achieved prominence because the focus of illness behavior research and theorizing has been on acute conditions and on limited stages of illness behavior process (before seeking professional help or the post-diagnosis period) where the model appears to fit the description. That is, since physicians can readily diagnose and treat most acute illnesses, the entire illness behavior process appears to be characterized by definitional and role clarity, consensus and harmony. It is proposed that, in contrast, when physicians have difficulties diagnosing and treating an illness, as is the case in multiple sclerosis and many other chronic illnesses, the entire process is more problematic. The situation is less normatively controlled and as a result, social dissensus and disharmony are likely to occur. It is argued that sick role behavior and the therapeutic encounter involve a process ignored by structural-functional theorists: role negotiation. The behavior of patients and physicians is shaped as much by a situational bargaining process as by normative expectations.