Blogging Illness: Recovering in Public

As a mode of open access public self-expression, blogs are one form of the unfolding massification of culture (Lovink). Though widely varied in content and style, they are characterised by a reverse chronological diary-like format, often produced by a single author, and often intimately expressive of that author’s thoughts and experiences. The purpose of this paper is to explore the use of blogs as a space for the detailed and on-going expression of the day to day experiences of sufferers of serious illness. We might traditionally consider the experience of illness as absolutely private, but illness, along with the process of recovery, retains a social and cultural aspect (Kleinman et al). A growing body of literature has recognised that the Internet has become a significant space for the recovery work that accompanies the diagnosis of serious illness (Orgad; Pitts; Hardey). Empowerment and agency are often emphasised in this literature, particularly in terms of the increased access to information and support groups, but also in the dynamic performances of self enabled by different forms of online communication and Web production. I am particularly interested in the ongoing shifts in the accessibility of “private” personal experience enabled by blog culture. Although there are thousands of others like them, three “illness blogs” have recently caught my attention for their candidness, completeness and complexity, expressing in vivid depth and detail individual lives transformed by serious illness. The late US journalist and television producer Leroy Sievers maintained a high profile blog, My Cancer, and weekly podcast on the National Public Radio website until his death from metastasised colon cancer in August 2008. Sievers used his public profile and the infrastructure of the NPR website to both detail his personal experience and bring together a community of people also affected by cancer or moved by his thoughts and experiences. The blogger Brainhell came to my attention through blogsphere comments and tributes when he died in February 2008. Spanning more than four years, Brainhell’s witty and charming blog attracted a significant audience and numerous comments, particularly toward the end of his life as the signs of his deteriorating motor system as a result of Amyotrophic Lateral Sclerosis (ALS, or “Lou Gherig’s disease”) riddled his intimate posts. Another blog of interest to me here, called Humanities Researcher, incorporates academic Stephanie Trigg’s period of illness and recovery from breast cancer within a pre-existing and ongoing blog about the intersection between professional and personal life. As I had crossed paths with Trigg while at Melbourne University, I was always interested in her blog. But her diagnosis with breast cancer and subsequent accounts of tests, the pain and debilitation of treatment and recovery within her blog also offer valuable insight into the role of online technologies in affecting experiences of illness and for the process of recovery.The subject matter of illness blogs revolves around significant personal transformations as a result of serious illness or trauma: transformations of everyday life, of body and emotional states, relationships, physical appearance, and the loss or recovery of physical ability. It is not my intention in this brief analysis to overgeneralise on the basis of some relatively limited observations. However, many blogs written in response to illness stand out for what they reveal about the shifting location or locatability of self, experience and the events of ongoing illness and thus how we can conceptualise the inherent “privacy” of illness as personal experience. Self-expression here is encompassing of the possibilities through which illness can be experienced – not as representation of that experience, a performance of a disembodied self (though these notions have their merits) – but an expressive element of the substance of the illness as it is experienced over time, as it affects the bodies, thoughts, events and relationships of individuals moving toward a state of full recovery or untimely death. Locating Oneself OnlineMany authors currently examining the role of online spaces in the lives of sufferers of serious illness see online communication as providing a means for configuring experience as a meaningful and coherent story, and thus conferring, or we could say recovering, a sense of agency amidst a tumultuous and ongoing battle with serious illness (Orgad, Pitts). In her study of breast cancer discussion forums, message boards and websites, Orgad (4) notes their role in regaining “the fundamentals disturbed by cancer” (see also Bury). Well before the emergence of online spaces, the act or writing has been seen as “a crucial affirmation of living, a statement against fearfulness, invisibility and silence” (Orgad, 67; Lorde, 61). For many decades scientists have asserted that “brief structured writing sessions can significantly improve mental and physical health for some groups of people” (Singer and Singer 485). The Internet has provided an infrastructure for bringing personal experiences of illness into the public realm, enabling a new level of visibility. Much of the work on illness and the Internet focuses on the liberatory and empowering act of story telling and “disembodied” self-expression. Discussion forums and cancer websites enable the formation of patient led “discourse communities” (Wuthnow). Online spaces such as discussion forums help their participants gain a foothold within a world they share with other sufferers, building communities of practice (Wegner) around specific forms of illness. In this way, these forms of self-expression and communication enable the sufferer of serious illness to counter the modes by which they are made “subjects”, in the Foucauldian sense, of medical discourse. All illness narratives are defined and constructed socially, and are infused with relations of power (Sontag; Foucault, Birth of the Clinic). Forms of online communication have shifted productive practice from professions to patients. Blogs, like discussion forums, websites, email lists etc., have come to play a central role in this contemporary shift. When Lovink (6) describes blogs as a “technology of the self” he points to their role in “self-fashioning”. Blogs written about and in the context of personal illness are a perfect example of this inclination to speak the truth of oneself in the confessional mode of modern culture borne of the church, science and talkshow television. For Foucault (Technologies of the Self, 17), technologies of the self: Permit individuals to effect by their own means or with the help of others a certain number of operations on their own bodies and souls, thoughts, conduct and way of being, so as to transform themselves in order to attain a state of happiness, purity, wisdom, perfection, immortality. Likewise, as a central concept for understanding Internet identity, the notion of performance (eg, Turkle) highlights the creativity with which illness bloggers may present their role as cancer patient in online spaces, perhaps as an act of resistance to “subjectifying” medical discourses and practices. Many bloggers wrest semiotic power through regular discussion of the language of pathology and medical knowledge, treatment processes and drugs. In the early stages of her treatment, Trigg plays with the new vocabulary, searching for etiologies and making her own semantic connections: I’ve learnt two new words. “Spiculated” describes the characteristic shape of a carcinoma on an ultrasound or x-ray. …The other word is at the other end of the spectrum of linguistic beauty: “lumpectomy”. It took me quite a while to realise that this was not really any different from partial mastectomy; or local excision. It’s an example of the powerful semantic connotations of words to realise that these phrases name the same processes: a long cut, and then the extraction of the diseased tissue (Humanities Researcher, 14 Oct. 2006).Partly due to the rarity of his illness, Brainhell goes through weeks of waiting for a diagnosis, and posts prolifically in an attempt to test out self-diagnoses. Amidst many serious and humorous posts analysing test results and discussing possible diagnoses Brainhell reflects on his targeted use of the blog: I am a word person. I think in sentences. I often take complex technical problems at work and describe them to myself in words. A story helps me understand things better. This blog has become a tool for me to organize my own thoughts about the Mystery Condition. (Brainhell, 6 Jan. 2004)The emancipatory potential of blog writing, however, can be easily overstated. While it is valuable to note and celebrate the performative potential of online production, and its “transformative” role as a technology of the self, it is easy to fall back on an unproblematic distinction between the actual and the virtual, the experience of illness, and its representation in online spaces. Textual expression should always refer us to the extra-textual practices that encompass it without imposing an artificial hierarchy of online and offline, actual experience and representation. As with other forms of online communication and production, the blog culture that has emerged around forms of serious illness plays a significant role in transforming our concepts of the relationship between online and offline spaces. In his My Cancer blog, Sievers often refers to “Cancer World”. He notes, for example, the many “passing friends” he makes in Cancer World through the medical staff and other regular patients at the radiation clinic, and refers to the equipment that sustains his life as the accoutrements of this world. His blog posts revolved around an articulation of the intricacies of this “world” that is in some ways a means of making sense of that world, but is also expressive of it. Sievers tries to explain the noti