Of butterflies and wolves: enacting lupus transformations on the Internet

Abstract

This article explores how women with lupus use the Internet to construct discourses about illness and transformation. The textual and symbolic content of Internet websites and message boards offers unique perspectives on the relationship between embodied experience and textual construction, and demonstrates the ways in which women use their participation on the Internet to communicate about themselves. Using common search engines, an array of lupus websites were identified, including message boards and personal pages, and the textual and symbolic content was analysed for reoccurring themes. Three distinct types of transformational discourses were identified: adjustment narratives; expert narratives; and transformations of personhood. These transformations are achieved and given renewed value through online participation. The article suggests that online communication provides a unique opportunity to understand embodiment but also that transformational discourses may ultimately be limiting.

Keywords:

• chronic illness
• transformation
• internet

Notes

Notes

1. A popularly cited report noted that chronic illness sufferers gain social support from the Internet, at the same time that their clinical outcomes worsen (Murray et al. 2004). While the author cannot comment on clinical outcomes, an analysis of the content of Internet discourse sheds light on why it can be a source of significant self-idealisation and transformation.

2. The data for this paper are considered ‘open source’ and this project was approved by Western Michigan University's Human Subjects Institutional Review Board (05-10-20) under the exempt category. Therefore, only websites that are accessible without a password and without ‘signing on’ were examined and no personal contact was made with any informant. The project seeks to examine ‘public’ not private discourses, which, admittedly, might vary considerably.

3. Assessing nationality or race on the web is quite difficult. Because of important cultural and structural (insurance) differences, my focus here is on participants from the United States. However, I cannot be sure in all cases that the information was written exclusively by American women. I examined entries for place names and looked for common spelling differences that might distinguish someone from the United Kingdom or elsewhere, thus excluding them. Moreover, discourses about race (which factors heavily in lupus morbidity) were, most surprisingly, almost completely absent from the narratives collected.

4. Although lupus affects African American and Latino women at noticeably higher rates than whites, there is no way to ‘read’ race or ethnicity on the web. I found no websites devoted to the particular problems faced by minority women, and very little evidence of race or ethnicity in any of the written texts or pictures. Therefore, this discussion makes no reference to how race or ethnicity impact Internet discourses on lupus, short of saying that, for now, they don’t.