As one of the very few official blog researchers in Norway I get a lot of phone calls and emails from journalists. Often this is how I find out what the big issue of the moment is in blogging, or at least what the mainstream media thinks is the big issue of the moment. Today two different journalists called about a Norwegian woman who’s blogging her battle against cancer.

Photo of a hospital corridor by Adrian Boliston. Creative Commons Attribution licenced.
Image by Adrian Boliston. (CC)

Disease blogging is one of the classic blog genres (though I’ve not actually heard it called that – is there a name for the genre?). Kaycee Nicole, a teenager with cancer, was one of the most well-known early bloggers – although of course she turned out to be a hoax or a fiction. (Goodness, the Wikipedia page about her is very brief – there’s a bit about it in my PhD thesis (pdf) if you want more.)

The reason Mirakela’s cancer blog appeals to journalists today in particular is that her boyfriend has started a support group on Facebook to collect money for alternative treatment for her tumour that for some reason she’ll have to pay for herself, even in Norway, and despite that alternative treatment having worked better than the state-funded chemotherapy that didn’t work last time she had a brain tumour. The group has already collected 20,000 kroner.

So the journalists obviously want to know how many people blog about their diseases and whether this is a phenonemon that is gaining popularity and how effective blogs are in raising money for diseases. The media likes numbers. Instead I tell them about the narrative qualities of a cancer blog.

Narrative blogs work well when they fit into a familiar narrative scheme, an archetypal narrative if you like. As in most narratives, blogs work well when there’s a clear protagonist (the blogger) trying to achieve a goal. The goal can be many things:

These goal-oriented blogs work well for the reader because we know how the plotline works, and yet we can enjoy the cumulative suspense of seeing how things go, day by day, in real time. Will the blogger achieve her goal? They work well for the blogger because the act of writing helps to keep you focused on your goal. It’s a way of coping. And there is satisfaction in seeing your life as part of a greater narrative.

The most serious goal of all is to stay alive. No wonder blogs telling of the fight against cancer engage us.

Anthony McCosker has written an interesting article about these blogs, “Blogging Illness: Recovering in Public”. He sees these blogs as emphasising the shifting boundaries between private and public that blogs in general challenge. Blogs about illness are doubly interesting because being sick in itself is an abdication of privacy. Your most intimate boundaries are crossed when you’re in hospital. Strangers examine your body, discuss it with students, stick foreign objects into you, palpate you, inject you with chemicals, remove organs or tumours. Privacy is a luxury that the very ill to a great extent lose. But there is a taboo against talking about this. We’re often too squeamish to even mention the word “cancer” around a friend who is battling it.

So in some ways, blogging about your illness is to take back control over your body and your life by owning it, by expressing it yourself, on your terms. That’s certainly what the pioneering researcher of online communities (the social media of the 1980s and 1990s) Howard Rheingold is doing with his blog “Howard’s Butt”, where he writes about his rectal cancer. (He has a dedicated twitter stream too: @rheingoldsbutt. And here’s his explanation of why he’s blogging about his cancer.) Another person in the same situation might have turned inwards instead, finding it easier to manage their battle in private, away from public view.

Are there other ways of thinking about this that I should consider?

7 thoughts on “blogging about cancer and the narrativity of blogs

  1. Lucas

    One of the most powerful disease blogs I have ever been priveleged to read, is by an old friend known as Predator, who died in late 2003, early 2004, which tracks the progress of his cancer.

    He did not believe in fancy mysql platforms underlying blogs – he published .txt files directly via ftp.

    Predator did not make it – his last blog entry is particularly poignant.

    Sadly, it seems his blog is no longer hosted, but I found a copy on the internet archive, here:

    http://web.archive.org/web/20080424044426/http://conway.cat.org.au/~predator/blog-index.html

    For someone like Predator, who had a fiercely scientific mind, coming to grips with his own impending death was something he needed a regular, public / private forum to think through. It just did not make rational sense to him that his body would soon give up on him, and this is something he grapples with throughout the blog.

    Lucas

  2. Predator at Bilateral

    […] Today, I visited Jill.txt, a blog by Jill Walker Rettberg I’ve been following for a few years now, which explores blogging as a form of research and fiction. In this post, Jill discusses disease blogging. […]

  3. […] Vi mennesker er komplekse og god helse kan ogs?• v?¶re en subjektiv vurdering. Jeg kan for omverden se sykdomsfri ut, men innvendig kan jeg slite b?•de psykisk (og fysisk) – uten at det vises. Sykdom eksisterte kanskje ikke i sosiale medier – f??r noen begynte f.eks ?• tvitre eller blogge om det – og senket terskelen for ?• v?¶re ?•pen om sin sykdom. Men tilbake til sosiale medier og helse. Et flott eksempel p?• en som tar tak i sykdommen sin i sosiale medier er min medstudent Kristine som blogger om ford??yelsessykdommer. Rettberg har skrevet en bloggpost om verdien av sykdomsblogging: Ved ?• blogge om sykdommen kan en ta tilbake kontrollen over sin egen kropp og sitt eget liv. En kan uttrykke sykdommen gjennom egne ord p?• egne premisser – sett fra brukeren eller pasienten sin side. Jeg tenker at dette kan v?¶re noe nyttig i at blogger kan ha en terapeutisk funksjon (L?ºders, 2007, s.155) F??r pleide vi kanskje ?• skrive ned vonde ting p?• papir og brente det eller rev det i stykker – fikk det til ?• forsvinne, men n?• blir de st?•ende p?• nettet og kanskje til stadig p?•minnelse? Jeg vet ikke, jeg syntes slikt er farlig farvann ?• n?¶rme seg. Jeg er p?• ingen m?•te terapeut eller psykolog. […]

  4. Marcus O'Donnell

    An interesting recent blog post from @jilltxt on blogging illness and narrative blogs http://bit.ly/g5iWyV #jeaa2010

  5. Susan Currie Sivek

    RT @marcusod: An interesting recent blog post from @jilltxt on blogging illness and narrative blogs http://bit.ly/g5iWyV #jeaa2010

  6. Jessie Daniels

    RT @marcusod: An interesting recent blog post from @jilltxt on blogging illness and narrative blogs http://bit.ly/g5iWyV #jeaa2010

  7. […] Sources: http://jilltxt.net/?p=2486, http://jilltxt.net/?p=697 Share this:TwitterFacebookLike this:LikeBe the first to like this post. […]

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