Stigma and Liver Disease

Abstract

This study explores stigma experienced by women with the autoimmune liver disease Primary Biliary Cirrhosis (PBC). Liver disease is commonly stigmatized due to an association with alcoholism and drug abuse, and persons with PBC may be subjected to stigma even though there is no etiological connection to substance use. Women with PBC (25 waiting list, 75 posttransplant), recruited through an online organization and two transplant centers, completed a survey regarding demographic, biomedical, psychological, and social contributors to overall quality of life (QOL). Two measures of stigma were analyzed in relation to the other variables and QOL. Open-ended questions concerned stigmatizing experiences and participants' reactions to them. Almost one in five reported experiencing stigmatizing behaviors from others, in particular from medical professionals, that resulted in hurt and anger. Higher stigma scores were associated with diminished mental and social dimensions of QOL as well as with greater uncertainty about illness, more symptoms from the disease and medication effects. Depression, fatigue, and age (younger) were key predictors of stigma. Those experiencing stigma should receive support and access to counseling. The knowledge and sensitivity of the public and medical professionals regarding the damage inflicted by stigmatizing any disease should be addressed through professional continuing education programs and public campaigns by organizations that support people with chronic liver disease.