The social construction of contested illness legitimacy: a grounded theory analysis

Abstract

This study examines the social influences that shape how individuals come to believe they have a contested illness and the explanations of illness legitimacy that result. Chronic fatigue syndrome, multiple chemical sensitivities, and Gulf War syndrome have all been identified as contested illnesses because their etiology, diagnosis, and prevalence are controversial. Narratives from in-depth interviews with 22 individuals who identified themselves as having these illnesses were analysed using a grounded theory approach. Findings indicate that claiming medical legitimacy for a contested illness involves a difficult and protracted process in which sufferers develop social representations of the etiology, diagnostic criteria, trajectory, and treatment of their illnesses. Study results shed light on the role of sufferers in the social construction of the medical and cultural legitimacy of emerging illnesses. Qualitative Research in Psychology 2006; 3: 233 Á 251

Women's understandings of sexual problems: findings from an in‐depth interview study

“…Their determination to pinpoint issues relating to the material body is indicative of the influence of the medical model and its central metaphor of the body as machine which can be readily fixed (Tiefer ). These findings share common aspects with the literature on contested illnesses and, according to Swoboda (), there is much at stake with regard to the development of a classification system, which affirms biomedical recognition.…”

Knowing ‘ME’ Knowing You: The Discursive Negotiation of Contested Illness within a Family

“…For some health concerns dominant bio-medical accounts are available labeling symptom clusters with diagnoses and offering technologies to assist in recovery. Ill health that cannot clearly be located within a medical explanatory framework is frequently highly contested, resulting in public battles for recognition and better understanding [1,2]. These diagnostic disputes present us with a possibility of viewing the social tensions surrounding culturally prominent discourses of medicine and health [1].…”

Unmet medical care needs in persons with multiple chemical sensitivity: A grounded theory of contested illness

“…Finally "getting it", people depart, possibly seeking alternatives, becoming self-reliant, and subtracting themselves from the system because they experience MCS, a disconfirming piece of data that fails to fit into medical hegemony. Svoboda [33] similarly found a core category of "illness legitimacy" in persons with CFS, MCS, or GWS who described their initial treatment as inadequate and who later pursued other avenues.…”

“…This conceptualization included experiencing a(n) "1) array of symptoms, 2) varying course, 3) the lack of an accepted testing measure to diagnose it, and 4) that the illness was 'reflective of human vulnerability to dangers increasingly encountered in modern life'"(p. 244). [33] In the current study, we were interested in the experience of acquiring and managing medical care among persons with MCS. It is important to study MCS, as the research to date demonstrates considerable suffering, disability, and lack of access to crucial resources for this group.…”