M/C - Media and Culture Home

M/C Journal, Vol. 11, No. 6 (2008) - 'recover'


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 Online

Many 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 notion of Cancer World as a transformation of status between insider & outsider: “once we cross over into Cancer World, we become strangers in a strange land. What to expect, what to hope for, what to fear – none of those are clear right now” (My Cancer, 30 June 2008). Part of his struggle with the illness is also with the expression of himself as encompassed by this new “world” of the effects and activities of cancer. In a similar way, in her Humanities Researcher blog Trigg describes in beautiful detail the processes, routines and relationships formed during radiation treatment. I see these accounts of the textures of cancer spaces as lying at the point of juncture between expression and experience, not as a disembodied, emancipatory realm free from the fetters of illness and the everyday “real” self, but always encompassed by, and encompassing them, and in this way shifting what might be understood to remain “private” in personal experience and self-expression.      

Blogs as Public Diary 

Axel Bruns (171), following Matthew Rothenberg, characterises blogs as an accessible technological extension of the personal home page, gaining popularity in the late 1990s because they provided more easy to use templates and web publishing tools than earlier webpage applications. Personalised self expression is a defining element. However, the temporal quality of the reverse chronological, timestamped entry is equally significant for Bruns (171).

Taking a broader focus to Bruns, who is most interested in the potential democratisation of media in news related blogs, Lovink sees the experimentation with a “public diary” format as fundamental, signalling their “productive contradiction between public and private” (Lovink 6). A diary may be written for posterity but it is primarily a secretive mode of communication. While blogs may mirror the temporal form of a diary, their intimate focus on self-expression of experience, thoughts and feelings, they do so in a very different communicative context.

Despite research suggesting that a majority of bloggers report that they post primarily “for themselves” (Lenhart and Fox) – meaning that they do not deliberately seek a broad audience or readership – the step of making experiences and thoughts so widely accessible cannot be overlooked in any account of blogging. The question of audience or readership, for example, concerns Trigg in her Humanities Researcher blog:

The immediacy of a blog distinguishes it from a journal or diary. I wrote for myself, of course, but also for a readership I could measure and chart and hear from, sometimes within minutes of posting. Mostly I don’t know who my readers are, but the kindness and friendship that come to me through the blog gave me courage to write about the intimacies of my treatment; and to chart the emotional upheaval it produced. (Trigg)

In their ability to produce a comprehensive expression of the events, experiences, thoughts and feelings of an individual, blogs differ to other forms of online communication such as discussion forums or email lists. Illness blogs are perhaps an extreme example, an open mode of self-expression often arising abruptly in reaction to a life transforming diagnosis and tracking the process of recovery or deterioration, usually ending with remission or death. Brainhell’s blog begins with MRI results, and a series of posts about medical examination and self-examination regarding his mystery condition:

So the MRI shows there is something on my brain that is not supposed to be there. The doctor thinks it is not a tumor. That would be good news. …

As long as you are alive and have someone to complain to, you ain’t bad off. I am alive and I am complaining about a mystery spot on my brain, and lazy limbs. (Brainhell, 24 Dec. 2003)

Brainhell spent many weeks documenting his search for a diagnosis, and continued writing up to his final deterioration and death in 2008. His final posts convey his physical deterioration in truncated sentences, spelling errors and mangled words. In one post he expresses his inability to wake his caregiver and to communicate his distress and physical discomfort at having to pee:

when he snorted on waking, i shrieked and he got me up. splayed uncomfortably in the wc as he put dry clothes on me, i was gifted with his words:

“you choose this, not me. you want to make it hard, what can i do?” (Brainhell, 13 Jan. 2008).

The temporal and continuous format of the blog traverses the visceral, corporeal transformations of body and thought over time. The diary format goes beyond a straightforward narrative form in being far more experiential and even experimental in its self-reflective expression of the events of daily life, thoughts, feelings and states of being. Its public format bears directly on its role in shaping the communicative context in which that expression takes place, and thus to an extent shapes the experience of the illness itself.

Nowhere does the expressive substance of the blog so fully encompass the possibilities through which the illness could be experienced than in the author’s death. At this point the blog feels like it is more than a catalogue, dialogue or self-presentation of a struggle with illness. It may take on the form of a memorial (see for example Tom’s Road to Recovery) – a recovery of the self expressed in the daily physical demise, through data maintained in the memory of servers. Ultimately the blog stands as a complex trace of the life lived within its posts. Brainhell’s lengthy blog exemplifies this quite hauntingly.

Revealing the Private in Public

Blogs exemplify a further step in the transformation of notions of public and private brought about by information and screen technologies. McQuire (103) refers to contemporary screen and Internet culture as “a social setting in which personal identity is subject to new exigencies”. Reality television, such as Big Brother, has promoted “a new mode for the public viewing of private life” (McQuire 114) contributing to the normalisation of open access to personal, intimate revelations, actions and experiences. However, privacy is “an elusive concept” that relates as much to information and property as to self-expression and personal experience (McCullagh). That is, what we consider private to an individual is itself constituted by our variable categories of personal information, material or immaterial possessions, or what counts as an expression of personal experience. Some analysts of online storytelling in the context of illness recognise the unsustainability of the distinction between public and private, but nonetheless rely on the notion of a continuum upon which activities or events could be considered as experienced in a public or private space (Orgad, 129-133).

One of the characteristics of a blog, unlike other forms of online communication such as chat, discussion forums and email, is its predominantly public and openly accessible form. Though many illness bloggers do not seem to seek anonymity or hold back in allowing massive access to their self-expression and personal experience, a tension always seems to be there in the background. Identification through the proper name simply implies potential broader effects of blog writing, a pairing of the personal expressions with the person who expresses them in broader daily interactions and relationships. 

As already “public” figures, Stephanie Trigg and Leroy Sievers choose to forego anonymity, while Brainhell adopted his alias from the beginning and guarded his anonymity carefully. Each of these bloggers, however, shows signs of grappling with the public character of their site, and the interaction between the blog and their everyday life and relationships.

In his etiquette page, Brainhell seems unclear about his readership, noting that his blog is for “friends and soul-mates, and complete strangers too”, but that he has not shared it with his family or all of his friends. He goes on to say:

You may not have been invited but you are still welcome here. I made it public so that anyone could read it. Total strangers are welcome. Invited friends are welcome. But of those invited friends, I ask you to ask me before you out me as the blog author, or share the blog with other people who already know me. (Brainhell, 18 Feb. 2004) 

After his death Ratty took steps to continue to maintain his anonymity, vetting many comments and deleting others to “honor BH’s wishes as he outline in ‘Ettiquett for This Blog”’ (Brainhell, 2 Feb. 2008).

In Leroy Sievers’ blog, one post exploring the conflict raised by publicly “sharing” his experiences provoked an interesting discussion. He relays a comment sent to him by a woman named Cherie:

I have stage four colorectal cancer with liver mets. This is a strange journey, one I am not entirely sure I can share with my loved ones. I am scared it might rob them of the hope I see in their eyes. The hope which I sometimes don’t believe in. (My Cancer, 26 July 2006)

Sievers struggles with this question: “How do you balance the need to talk about what is happening to you with the tears of a close friend when you tell him or her the truth? There’s no simple answer.” The blog, in this sense, seems to offer a more legitimate space for the ongoing, detailed expression of these difficult and affective, and traditionally private experiences.

In some posts the privacy of the body and bodily experiences is directly challenged or re-negotiated. Stephanie Trigg was concerned with the effect of the blog on her interactions with colleagues. But another interesting dilemma presents itself to her when she is describing the physical effects of cancer, surgery and radiation treatment on her breast, and forces herself to hold back from comparing with the healthy breast: “it's not a medical breast, so I can't write about it here” (Humanities Researcher, 10 Jan. 2007). One prostate cancer blogger, identified as rdavisjr, seems to have no difficulties expressing the details of a physical intrusion on his “privacy” in the far more open forum of his blog:

The pull-around ceiling mounted screen was missing (laundry?), so Kelly was called into the room and told to make a screen with a bed sheet. So here I am with one woman sticking her finger up my ass, while another woman is standing in front of the door holding an outstretched bed sheet under her chin (guess she wanted a view!)

The screen was necessary to ensure my privacy in the event someone accidentally came into the room, something they said was a common thing. Well, Kelly peering over that sheet was hardly one of my more private moments in life! (Prostate Cancer Journal, 23 Feb. 2001).

Conclusion

Whatever emancipatory benefits may be found in expressing the most intimate of experiences and events of a serious illness online, it is the creative act of the blog as self-expression here, in its visceral, comprehensive, continuous timestamped format that dismantles the sense of privacy in the name of recovery. The blog is not the public face of private personal experience, but expressive of the life encompassed by that illness, and encompassing its author’s ongoing personal transformation. The blogs discussed here are not alone in demonstrating these practices. The blog format itself may soon evolve or disappear. Nonetheless, the massification enabled by Internet technologies and applications will continue to transform the ways in which personal experience may be considered private.

References

Bruns, Axel. Gatewatching: Collaborative Online News Production. New York: Peter Lang, 2005.

Bury, Michael. “Chronic Illness as Biographical Disruption.” Sociology of Health and Illness, 4.2 (1982): 167-182.

Foucault, Michel. Birth of the Clinic: An Archaeology of Medical Perception. Trans. A.M. Sheridan. London: Tavistock, 1973.

———. “Technologies of the Self” Technologies of the Self: A Seminar with Michel Foucault. Ed. Luther H. Martin, Huck Gutman, Patrick M. Hutton, 1988: 16-49.

Hardey, Michael. “‘The Story of My Illness’: Personal Accounts of Illness on the Internet.” Health 6.1 (2002): 31-46

Kleinman, Arthur, Veena Das, and Margaret Lock, eds. Social Suffering. Berkeley: University of California Press, 1997.

Lenhart, Amanda, and Susannah Fox. Bloggers: A Portrait of the Internet’s New Storytellers. Washington: PEW Internet and American Life Project, 2006.

Lorde, Audre. The Cancer Journals. San Francisco: Spinsters Ink, 1980.

Lovink, Geert. Zero Comments: Blogging and Critical Internet Culture. London: Routledge, 2008.

McCullagh, Karen. “Blogging: Self Presentation and Privacy.” Information and Communications Technology Law 17.1 (2008): 3-23.

McQuire, Scott. “From Glass Architecture to Big Brother: Scenes from a Cultural History of Transparency.” Cultural Studies Review 9.1 (2003): 103-123.

Orgad, Shani. Storytelling Online: Talking Breast Cancer on the Internet. New York: Peter Lang, 2005. 

Pitts, Victoria. “Illness and Internet Empowerment: Writing and Reading Breast Cancer in Cyberspace.” Health 8.1 (2004): 33-59.

Rothenberg, Matthew. “Weblogs, Metadata, and the Semantic Web”, paper presented at the Association of Internet Researchers conference, Toronto, 16 Oct. 2003. ‹http://aoir.org/members/papers42/rothenberg_aoir.pdf›.

Singer, Jessica, and George H.S. Singer. “Writing as Physical and Emotional Healing: Findings from Clinical Research.” Handbook of Research on Writing: History, Society, School, Individual, Text. Ed. Charles Bazerman. New York: Lawrence Erlbaum Associates, 2008: 485-498. 

Sontag, Susan. Illness as Metaphor; And, AIDS and Its Metaphors. London: Penguin, 1991. 

Trigg, Stephanie. “Life Lessons.” Sunday Age, 10 June 2007.

Turkle, Sherry. Life on the Screen: Identity in the Age of the Internet. New York: Simon and Schuster, 1995.

Wenger, Etienne. Communities of Practice: Learning, Meaning and Identity. Cambridge: Cambridge University Press, 1998.

Wuthnow, Robert. Communities of Discourse: Ideology and Social Structure in the Reformation, the Enlightenment, and European Socialism. Cambridge, MA: Harvard University Press, 1989.

Blogs

Brainhell. ‹http://brainhell.blogspot.com/›.

rdavisjr. Prostate Cancer Journal. ‹http://pcjournal-rrd.blogspot.com/›.

Sievers, Leroy. My Cancer. ‹http://www.npr.org/blogs/mycancer/›.

Tom’s Road to Recovery. ‹http://tomsrecovery.blog.com/›.

Trigg, Stephanie. Humanities Researcher. http://stephanietrigg.blogspot.com/›.