Questioning the Lyme Disease Dissertation Project

I’ve been working on finalizing my dissertation proposal for a few weeks now, and I keep having crises of ideas. Despite wonderful support from my friends, parents, #TeamRhetoric colleagues, and advisers, I remain tormented by the following questions:

Should I make Lyme Disease the focus of my study, or is that too limiting? My adviser is probably right when she says that a book about Lyme Disease, like Autism or another particular condition, may be attractive to presses because it will interest a specific population of people and thus might be more marketable. However, I can’t even think that far ahead right now. I’ve read so many articles on the ChronicleVita, and in other places about affirming that your dissertation is NOT a book and that it may not become a book, so even though my advisers think the project is promising in its current form, it’s still hard to imagine it transitioning into a book.

Is it rhetorical enough? WHAT IS RHETORIC? Why am I using rhetoric as a method and lens for analysis? Much of the research about chronic illness, gendered experiences with illness, the value of patient narratives, etc. is coming out of medical sociology and anthropology, social history, history of science and medicine, etc. I know that rhetoric, which studies how arguments are constructed and thus create ways of knowing and making meaning, is a useful way of looking at data. (By “data,” I mean any ideas, facts, or knowledge that can be investigated as a way of answering a question–which can range from narratives to images to lab tests). BUT STILL. I think what might be confusing me is that scholars and activists from these fields are trying to show how constructed–i.e. not natural–these illness things are, and that’s pretty much what rhetoricians do, so I don’t want to feel like I’m repeating work that’s already been done. I’d like to believe that rhetoricians’ perspectives bring something unique to the table, but thus far it has been difficult to parse.

What archives or primary materials am I going to investigate to make claims, and which methods will I use? When I first started investigating the health and medical humanities, I thought their methods were engaging and presented new and exciting opportunities for rhetorical scholarship. Now, however, I have to be careful that my project will be “read” as rhetorical to future job committees and tenure committees, which is forcing me to reconsider some of my (seemingly) radical methods. I spent a lot of time trying to justify why visual ethnography would make for a compelling rhetorical research method (building off of McNely et al.’s work), but I have long since moved away from the *justification* piece. If I’m going to include nontraditional research methods, I will have to spend time and space justifying it…which means that I need to figure out a) what methods I’m going to incorporate, and b) WHY they’re going to be useful and illuminate something new and exciting and different. Again, although I spent so much time toying with this visual ethnography thing, I haven’t figured out if or how it is going to work and what it might do that might be helpful.

It’s funny how these things work out. My undergraduate rhetorical education focused on feminist rhetorical history. I have since moved away from this focus during graduate school for a variety of reasons, but it’s easy to want to return to those methods because I already know how to do them. For example, I could study local and national newspaper articles to chart a revised history of the emergence of LD, which was “discovered” by researchers at Yale…who never really credited the two mothers from Lyme, CT who alerted them to the phenomena. These mothers, Polly Murray and Judith Mensch, are sometimes named in popular publications, but according to some quick researchers, never in peer-reviewed scientific ones (i.e. http://www.nytimes.com/1997/08/10/nyregion/taking-a-new-tack-against-lyme-disease.html). This gets particularly interesting because there has been some research about the sexual and in utero transfer of LD (http://www.scientificamerican.com/article/mothers-may-pass-lyme-disease-to-children-in-the-womb/), which makes me think a lot about the rhetorical characters of LD and how they have informed the LD controversy as we know it. Some sources I’ve read have argued that because LD was discovered by patients and wasn’t easily figured out by researchers of clinicians, it is deeply grounded in community efforts and thus doesn’t easily become the authority of researchers, unlike in many other cases.

Relatedly, I’ve also come upon another conundrum: If chronically ill people with controversial/emergent illnesses are doing collective action work in certain places already, WHY THE F— AM I GOING TO DO MY OWN STUDY?!  Not accounting for and valuing the work people are already doing and doing my own study instead seems to contradict everything I believe about valuing patient narratives and experiences.My preliminary research/internet perusing suggests that ill individuals are hashtagging #LymeDisease, #spoonies, #chronicpain, #chronicillness, and other terms on Twitter and Instagram (and probably other places) to visually and textually document their experiences and get community support. I’m sure there’s more out there, but I’m hesitant to jump in with both feet. What worries me about using social media as a research archive is that it seems ephemeral and might not matter in a few years. (Truthfully, I’m concerned that it will be meaningless by the time I try to publish a book). However, other people (per this Slate article from the other day – http://www.slate.com/articles/technology/users/2016/03/how_spoonies_people_with_chronic_illnesses_use_memes_selfies_and_emojis.html) are taking it seriously, so perhaps I should, too. I guess what’s been hard is that my early searches have been hard to “code,” meaning that sometimes it seems like people are  using these hashtags to gain social capital to sell something or as spam versus using it to build or enter into an illness community. My adviser suggested an interesting solution: come up with a key term or concept to help me “read” (i.e. organize, generate meaning, analyzed) these materials. For example: disability. I could look at all of the Instagram posts with a #LymeDisease tag and try to answer the question, “How do LD patients construct (or not) a disability identity?” With inquiries by disability studies scholars like Alison Kafer about who “counts” as disabled, what terms individuals with disability should or should not take up, and more, I’d like to work on answering this question as part of my dissertation. However, I feel uneasy about using social media to answer it. I could certainly conduct some qualitative interviews with individuals with LD in North Carolina and study them for similar themes. There is very little qualitative research about Lyme Disease AND very little research about Lyme in the American south, so I would certainly be generating new knowledge, but that also doesn’t feel quite right to me.

This has prompted me to consider if I should incorporate digital humanities research tools and methods into the project. LD is very much geographically bound–socially and environmentally–but should I go there?

What ideas might I use for peer-reviewed journal articles vs. THE DISSERTATION? This might seem insignificant, but I think that some of my inner chaos come from trying to narrow my focus for the dissertation but finding perfectly useful, bounded projects that might be interesting to pursue but that don’t fit in the realm of my current project outline. For instance, there are various health poster collections that are perfectly suited for rhetorical and visual analysis, but if they’re not about LD, they probably aren’t a great fit for my dissertation unless I’m directly connecting them back or comparing them with LD ephemera.

***

To begin answering some of these questions, I started playing around (i.e. “researching). I made the following list:

Possibilities for Archives/Materials:

  • Peer-reviewed scientific journal articles about Chronic Lyme Disease/Post-Treatment LD à learn about the emergence of LLMDs and the rhetorical problem of “Chronic Lyme”
  • Interviews?
  • Arts-based therapy ephemera?
  • Hash tag activism on Tumblr, Instagram, and/or Twitter à and/or ChronicBabe.com
    • Leveraging gender and chronic illness – pushing back against traditional patriarchal authorities
    • Femininity as radical, rhetorical reclaiming of authority and identity à paper I wrote for Jane’s seminar

This led me to think about Judith Lorber’s Gender and the Social Construction of Illness, so I used Google Scholar to figure out who had cited her (almost 500 people) and then, with that sect, who had also used the term”rhetoric” in their publication. Here’s a few I came up with:

  • Werner, Anne, and Kirsti Malterud. “It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors.” Social science & medicine 57.8 (2003): 1409-1419.
  • Sim, Julius, and Sue Madden. “Illness experience in fibromyalgia syndrome: A metasynthesis of qualitative studies.” Social science & medicine 67.1 (2008): 57-67.
  • Willard, Barbara E. “Feminist interventions in biomedical discourse: An analysis of the rhetoric of integrative medicine.” Women’s Studies in Communication 28.1 (2005): 115-148.
  • Bell, Mebbie. “Re/forming the anorexic “prisoner”: Inpatient medical treatment as the return to panoptic femininity.” Cultural Studies↔ Critical Methodologies 6.2 (2006): 282-307.
  • Clarke, Adele E., and Janet Shim. “Medicalization and biomedicalization revisited: Technoscience and transformations of health, illness and American medicine.” Handbook of the sociology of health, illness, and healing. Springer New York, 2011. 173-199.

Note: I got up and got a snack, but I still managed to bite off all my nails. :-/

I’m not sure where it will go from here, but I told my advisers that I’d figure it out by Sunday night…. AHHH!

 

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