Documenting My Sick Body: Guidelines for a Manifesto/Project

Since I was diagnosed with Lyme Disease in November 2009, I’ve been documenting my illness in a variety of ways. My mom–one of my primary illness support team members–created a timeline that included both illness highlights (when I first began experiencing symptoms, when symptoms changed, etc.), different medication start/stop dates, medical consultations, etc. This document was helpful when I/we would give my dreaded health history to whatever doctor I was seeing next…until I/we realized that being up front about seeing so many doctors freaked other doctors out (#rhetoricalproblems). On the other hand, my family and close friends will also report that I like to send them selfies of my swollen/painful joints…for no particular reason. Maybe to qualify my complaints in some way? When I had a burn accident in February, I took hundreds of photos of the burns so I could document my recovery process in hopes of filing a lawsuit. (Note: few attorneys are dumb enough to want to fight a case against a state government institution).  Yet I also found myself, for whatever reason, taking some more playful shots alongside the medical-gaze ones. For example…

Although I had been in a horrible accident at 11:55am, around 5:00pm my pain drugs had kicked in enough for me to realize that my hair looked great and needed to be documented.

This is me in my bathroom at my house. I am wearing the hospital gown that I wore home from the emergency room…we won’t go into why that was necessary. Although I had been in a horrible accident at 11:55am, around 5:00pm my pain drugs had kicked in enough for me to realize that my hair looked great and needed to be documented. I took this selfie using a mirror reflection. I’m not sure why, though I’m sure that the Fentanyl would help explain it?

Jen pointed out to me at writing group this week that this kind of documentation is different from other kinds of documentation that patients are typically asked to produce. For instance, diabetes patients are likely supposed to track their A1Cs, chronic pain patients are often asked to keep a pain diary, etc. I haven’t heard of anyone documenting their body in this way for medical reasons, though of course that doesn’t mean that it hasn’t happened. What’s notable, I think, is that I’m trying to keep track of what’s happening to my body in its essential banality. I’m keeping track of various unextraordinary moments in time by documenting my fluctuating knees/knee pain–a common issue for people with Lyme Disease, Post-Treatment Lyme Disease Syndrome, and Chronic Lyme Disease (if it’s really at thing).

Here is my first attempt at establishing some principles (Todd Taylor-style) for this visual autoethnography project:

  1. My decision to document my body in a way that works for me gives me more agency as a chronically ill person and thus helps me move from “patient” to “health seeker.”
  2. These photographs honor the dull, uninteresting everyday pains and practices of chronically ill people. Specifically mine. I don’t speak for any or all of these people and need to be careful not to do that. Yet I do speak as a chronically ill person, which is important to what I think might be at stake for this project and chronically ill people in the United States.
  3. I want these photos to be able be read by screen readers and other accessibility technologies. Since this is a disability studies-oriented project, I want everyone from the academic (and social?) communit(ies) to be able to participate by watching*/reading* if they want.
  4. These photos–the technologies I’m using to take them and store them, the locations in which I take them, etc.–are part of my available means of persuasion. (Thanks, Aristotle!) I come from a very privileged position and want to be attentive to the idea that not everyone–actually, very few people–have the economic means to access such technologies, the digital literacy to figure out things like Flikr, etc. I aim to be attentive to the affordances and limitations of my chosen technologies and to be reflexive as I make recommendations for other humans/researchers/etc.
  5. I’m hoping to shift toward Andrea Lunsford’s definition of rhetoric: “the art, practice, and study of human communication.” I see this project as enabling a kind of “human communication” that I’m unable to achieve using only written words on paper. However, I’m not yet sure what this project “communicates” to other humans, if anything. We shall see?

Perhaps this sounds insane. (It probably is). But I’m looking for something that will…do more, if that’s even possible? I recently read three excellent (and recently published!) monographs that can be classified as feminist rhetorical studies of health, science, and medicine–exactly the kind of work that I want to do–but I found myself getting antsy when I read them. The rhetorical analyses of scientific and public/non-specialist communication about health issues was FANTASTIC, but I wanted to see the breastfeeding recommendation report documents marked up so that I could SEE the differences between them over the years. I wanted to SEE more posters about WWI sexual health campaigns.  I needed images, graphics, video…something? Maybe it’s the millennial in me that gets easily bored, but I actually don’t think so. Hmm….

*”Watching” and “reading” in both normative/traditional ways as well as in other modes accessible to individuals with a variety of disabilities and illnesses.

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