“You'd think she had AIDS:” Stigmatizing responses to asbestos-related disease as a barrier to health behavior

Background: Amphibole asbestos exposure in the Libby, Montana area (population, 12,000) constitutes what EPA called the “worst environmental disaster” in U.S. history. More than 270 people have died; hundreds have asbestos-related diseases (ARD); given ARD's lengthy latency period, thousands remain at risk. Stigma, a communication phenomenon involving labeling, manifests itself in altered interpersonal relationships (Goffman, 1963) with potential public health consequences. Purpose: We analyzed stigma and its relationship to health behavior (providing social support, reducing risk, seeking diagnosis/treatment) in a community with widespread exposure to highly toxic asbestiforms. Significance: Previous research addressed rapidly-striking natural disasters' psychosocial consequences and stigmatizing responses to cancer and HIV. Little is known about responses to slow-motion disasters; ARD had not been identified previously as stigmatizing. Methods: Nine focus groups and five interviews (n = 71) were conducted in Libby with people with ARD, family members of people with ARD, and people with no ARD in their families. Results: In a community that otherwise values “taking care of its own,” stigmatizing responses function as a barrier to health behavior. Discussions of “the asbestos problem” were heavily-laced with evidence of ARD-associated stigma, mirroring theory and research findings on stigmatizing diseases, including: negatively characterizing people with ARD; blaming the victim; interpersonal distancing; minimizing ARD's seriousness/magnitude; courtesy stigma (interpersonal and community stigma by association); posing alternative explanations/diagnoses; and self-stigma (e.g., embarrassment, unwillingness to be diagnosed). Conclusion: The Libby experience yields guidance for investigating potential stigmatizing responses to ARD in other communities and developing community-level interventions for other stigmatizing conditions.