“To me, it's my life”: Medical communication, trust, and activism in cyberspace

This paper studies the conversations and activities of an online support group for breast cancer sufferers and survivors and their supporters. Using communications medium theory and social capital theory, it examines the mundane and profound exchanges, the poignant self-disclosures, the creative expressions of solidarity, and the minor but not-insignificant political actions of people—initially strangers—who come together as a ‘virtuous circle,’ not only to assist with medical issues but also to meet emotional and even material needs. Sponsored by the Canadian nonprofit organization Breast Cancer Action Nova Scotia (BCANS), this virtual community has logged over a half million messages since 1996. Not every BCANS participant is an activist—many are just trying to grapple with their disease—but some find ways to shatter the professional “information monopoly,” and to press for healthcare improvements. The study illustrates the scope, passion, and complexity of peer-to-peer medical communication in a virtual environment that promotes “thick trust”. BCANS participants discuss with candor, warmth and even humor such painful topics as death and dying and the crises in intimate relationships brought about by a terminal illness. The sharing of confidences and fears enables participants to pool their ‘collective intelligence’ about many things, from how to cope with swelling, to how to think about end-of-life issues, to how to improve social policy.