Photographing Lyme Disease

I’m thinking about using visual autoethnography as a method for documenting my rhetorical negotiations with Lyme Disease. For me, these negotiations are both personal and academic; I am a person who lives with Post-Treatment Lyme Disease Syndrome (PTLDS) and I am a budding academic who studies how arguments about Lyme work in public and scientific contexts. I think that visual autoethnography might help me bridge this gap by allowing me to incorporate elements of my own illness experience with rhetorical theory. Of course, there are many different ways to do this–each discipline seems to have methods for theorizing from the self–but what interests me here is the visual piece. My friends and family are often the unfortunate (or lucky?!) recipients of my iPhone swollen body part selfies, which I take to eventually prove to my doctors that my body parts do, in fact, swell sometimes. (Strangely, my swollen joints seem to magically appear “normal” every time I’m at a doctor’s appointment). Last night, my friend and colleague Jason suggested that using visual ethnography might help me understand Lyme from a different perspective. After all, photographs are inherently rhetorical, marked by what we choose to capture, what we exclude, the tools we use to take them, how we distribute them, etc. It never occurred to me that my swollen knee selfies might be helpful for my research. I’m lucky to have such smart people in my life!

Before I start taking even more selfies of my various body parts, at least one question remains: how are these photos going to help me learn about and rhetorically analyze Lyme Disease? I can’t pretend that I have a clear answer yet. I’m definitely not quite sure. However, I think that visually documenting the ways Lyme changes my body (or the ways I think Lyme changes my body) both authenticates my experience as a chronically ill person and compels me to think beyond the language that dominates our understanding of Lyme Disease. Does it matter if I “have” PTLDS, Chronic Lyme, or something else entirely if whatever it is makes my knees swell? Ultimately, I believe that naming is a powerful act that can relieve ill people of the burden of not knowing what’s “wrong” with them, but I wonder if everyday images can also validates people’s struggles.

My first Lyme Disease selfie: documenting my achy knees and ankles as I type this blog entry in my English Dept. office. I'm not seeing or feeling any swelling right now, but I'm feeling a little self-conscious about this selfie. This might take some getting used to...

My first Lyme Disease selfie: documenting my achy knees and ankles as I type this blog entry in my English Dept. office. I’m not seeing or feeling any swelling right now, but I’m feeling a little self-conscious about this selfie. This might take some getting used to…

I don’t know much about visual ethnography yet, but here is a quote from an article that’s inspiring me to think more broadly:

Where words fail, I suggest visual autoethnography opens spaces of understanding; transcending the limitations of verbal discourse and opening spaces for creativity and appreciation, reflection and comprehension as researcher and respondent explore the intricate performances through which knowledge and encounters of self and other are enlivened. Using a combination of autoethnography and photo-elicitation within the interview setting, visual autoethnography ignites an embodied connection and understanding between researcher and respondent. Thus, conversations materialise through intersubjective negotiation as visuals mobilise an enriched, embodied research space within which previously ‘hidden’ understandings of tourist practice emerge. Mobilising a “sharing of speech” and “sounds of silence”, the image becomes the bridge that connects researcher’s autoethnographic experiences with those of respondent’s as they emerge within the space of the interview.

  • from Scarles, Caroline. “Where words fail, visuals ignite: Opportunities for visual autoethnography in tourism research.” Annals of Tourism Research 37.4 (2010): 905-926.
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