| This thesis is an account of a two-year ethnographic engagement with a self-help support group for people with a chronic autoimmune illness called systemic lupus erythematosus (SLE). Through observation of group meetings, document analysis and interviews, I have investigated the group's information world to understand how group members educate themselves and others about lupus, how they use medical expertise, and how they employ other types of knowledge in the work of chronic illness. I have also tried to understand how various ideas about illness, medicine, expertise and power are manifest in the voices and the teachings of the group's members, and in the information resources they use. Group members attempted to impose meaning and order onto the personal experience of a disease whose biopathology remains unclear, despite the knowledge and efforts of therapeutic experts. They did this by disseminating interpretations of expert knowledge and by supplementing such knowledge with lay or experiential understandings drawn from personal experience and from the support group's culture. |
