Tag Archives: Borrelia burgdorferi

Revising Lyme Research Questions

One of my wise advisers from my days as an undergraduate at University of Maryland recently gave me some important advice. As usual, I was complaining about my various projects, particularly about my inability to select useful and appropriate research methods. My adviser said something to this effect: “Why don’t you figure out your research questions before you select your research methods? You can’t figure out how to answer the questions until you’ve chosen them.” SO SIMPLE, YET SO BRILLIANT. (I guess this is why we have advisers). In turn: I’m writing this post because the time has come for me to really nail down my research questions (at least for my dissertation proposal. I know that they will change along the way, but I can’t get the proposal approved without a version of these questions, so here goes…).

I have been working on these questions for some time. Almost a year, in fact. When I teach my students about the research process, they are always frustrated by my assertion that research IS a process–one that is recursive, reflexive, and constantly evolving. (I mean, it’s called “re-search” for a reason!) However, none of that means that the research process isn’t frustrating. It’s hard to keep coming up with versions of the same questions (and some new ones), but hopefully my questions get better and better as I continue to revise them. Here are a few versions:

April 2015:

  • What does it mean to receive a Lyme disease diagnosis?
  • What does that diagnosis allow/not allow? Legitimize/not legitimize?
  • Who is able to receive a diagnosis, and who is not?
  • What do you have to know about lyme in order to self-advocate or receive appropriate treatments?
    • If diagnosis matters so much, what are we to do if we feel that our healthcare providers have misdiagnosed us?
  • In general, what does it mean to have a chronic condition or to live as a chronically ill person? What kinds of evidence are required for women’s chronic illness symptoms to be believed or taken seriously?
  • How do women’s stories complicate our understanding of how they navigate the world while living with disease?
  • When disease names and language change, what happens?
  • How is illness language being turned and nuanced?
  • When ill women are given access to communicate (i.e. online?), what happens?
  • What kinds of rhetorical strategies do chronically ill women adopt to navigate their illness experiences? What kinds of illness language do ill people, scientific, and public communities create, and how does it influence the ways patients are cared for and treated?

July 2015:

  • KEY QUESTION: What is the (if any?) rhetoricity of being “chronic,” and how can chronically ill people (specifically women) leverage their diagnoses, treatments, and long-term care to their advantage (i.e. to get the least harmful, most effective treatments and experiences)?
  • How does a diagnosis change the ways in which an ill person lives, perceives, acts out, and discusses publicly their symptoms/condition?
  • For whom is a diagnosis important, and what does it do? (Patients vs. doctors vs. insurance companies vs. big pharma, etc.).
  • How do patients weigh the risks of particular treatments? (Meaning, when the list of side effects is longer than the list of benefits on FDA-approved medication, why might patients choose to take/not take them?)
  • How are treatments framed differently for individuals with chronic conditions? What does it mean for patients to be treated for psychiatric conditions that occur as a result of chronic illness (forever marking them as individuals with mental disorders)?
  • How do chronically ill people sustain themselves even when there is no hope for recovery? How are traditional conceptions of “cure” and “recovery” reframed for the chronic patient?

October 2015:

  • What does Lyme Disease look like? (And how does this affect who is diagnosed with it–and appropriately treated–and when?)
  • Who circulates images of Lyme Disease? What does the circulation network look like?
  • How do Lyme Disease diagnosis health-seekers/patients envision their connection to Lyme? How do they document their experiences of Lyme, if at all? (Or other ambiguous chronic illness/condition).
  • How do clinicians who diagnose Lyme Disease and researchers who do experiments to learn more about Lyme Disease *see* it–in the lab, in the treatment center, in the exam room? How do these images circulate?
  • What is the history of images of Lyme Disease and their connection to diagnosis?
  • And of course…How do Lyme Disease visuals function rhetorically, particularly in diagnosis situations? How might images/visuals be effective argumentative tools for presenting new ideas/shifting the focusing/reevaluating the stakes of Lyme Disease diagnosis?

November 2015:

  • What is the origin of the standard Lyme Disease images, and how have they molded and circulated between professional and patient communities?
  • In the midst of complex arguments about how long the Lyme infection remains active and if intravenous antibiotics cause more side-effects than healing, four standard images accompany discussions from all ideological perspectives: one or more ticks, EM rashes, Lyme spirochetes, and maps that chart Lyme diagnoses across the United States. Why d0 these images continue to be taken up and recirculated?  How have they have played a covert but significant role in making paradoxical claims about Lyme persuasive?
  • How might visual ethnography reveal new complexities in the diagnosis, treatment, and recovery from Lyme Disease? What happens when we ask integral but invisible stakeholders (i.e. Lyme patients) to become producers of visual discourse about Lyme?
  • How might visual ethnography create new images that provide an alternative, patient-centered perspective on the condition?
  • How might  language, objects, and social actions (including scientific “facts”) function as persuasive tools (which are inherently impartial)?
  • How might a rhetorical analysis of the visual rhetoric of Lyme Disease offer new ways to understand a condition that science of medicine have not yet figured out?
  • How have (and how do) images of Lyme Disease shape(d) popular, medical, and scientific discourses and the practices of Lyme diagnosis, treatment, and recovery?

As you can see, this project has already gone through many shifts…and I haven’t officially started it yet. I guess I should also think about my intended interventions:

  1. Lyme Disease–like many other (particularly controversial conditions and diseases)–is rhetorically constructed. This impacts health seekers’ diagnosis, treatment, and recovery, as well as the ways that knowledge about the disease is constructed, circulated, and contested.
  2. Analyzing visuals (i.e. through visual rhetorical analysis) can help us understand Lyme (and other conditions and diseases) as rhetorical phenomenons. As Jeanne Fahnestock argued in her groundbreaking book, Rhetorical Figures in Science, linguistic figures of speech translate to visual figures in scientific writing.
  3. Guiding Lyme health seekers through the creation of their own images through participant-solicited visual ethnography and digital storytelling (?????) allows them to intervene and perhaps make a difference in Lyme Disease knowledge production. (TBD if I do some kind of study. We shall see?)

I guess I need to go back through and narrow down/select which questions will work for me…but since it’s almost 4:00pm, I guess I should shower or exercise… To be continued!

 

 

 

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How to Talk About My Project: Part 1 of 1 million

I had an incredibly productive meeting with BM last Wednesday, so this morning, I’m trying to work on one of her suggestions: to get in touch with some Lyme Disease researchers and organizations (in-person meetings preferable). The first step to doing this is probably sending an email…which is actually pretty challenging for me, since I’m not quite sure how I want to describe my project. I’ve titled this post “Part 1 of 1 Million” because if I take seriously my graduate studies in rhetoric, I know that will need to frame the project in different ways for different audiences…and I suspect that, over time, I will consult with many audiences. Some options for describing my project include:

  • A project about the rhetoric of Lyme Disease diagnosis (meaning, the ways that arguments about the diagnosis of Lyme are created, debated, and circulated)
  • A project about Lyme Disease images/visuals, particularly focusing on the bull’s-eye as the least subjective symptom…which causes problems for ill people who suspect they have Lyme Disease but do not have the bull’s-eye to “prove” it.
  • A project about Post-Treatment Lyme Disease and arts-based research methods. Arts-based research methods and how they can illuminate the experience of Lyme Disease diagnosis?
  • A project about the rhetoric of Lyme Disease in which I am hoping to do a case study with a group of PTLDS people using visual ethnography.
  • A health humanities project about the visual rhetoric of Lyme Disease, focusing on the presence or absence of the bull’s-eye in Lyme Disease diagnosis.
  • Other ideas?

My goal is that my project will appear to be incredibly interesting yet nonthreatening.  So interesting and nonthreatening that these researchers, advocates, nonprofit managers, etc. want to invite me in for brief in-person meetings! But I have to get in the door first. Do I even explain what rhetoric is or identify as an English PhD student? (Would “humanities” suffice?) Do I bring up the visual ethnography stuff? (I think that some people outside of the social sciences know what ethnography is, but will the “visual” piece make it more confusing? I can’t just say that I’m trying to do an ethnography, though, because I’m not trying to do a clinical ethnography, which is what that implies).

One way to vet this might be to send it to some scientist/doctors who I already know and to see what they think. Maybe I’ll even ask my parents for their opinions (since they’re trained as an entomologist/pharmacist and an electrical engineer). I also need to think about what I want from these people. I’d like to consult with them about my research, but I probably need to give them something in return. (Besides running a groundbreaking study that changes the way that clinicians and health seekers diagnose and treat Lyme Disease, of course. HAHA IN MY GRAD STUDENT DREAMS).

Right now, I guess I really need to pick 2-3 descriptions: one for Lyme Disease foundation/nonprofit people (more Lyme-technical but less academic jargon); scientists/clinicians (methods-focused, not as Lyme Disease technical because I am not a scientist/doctor?); and maybe begin to think about how I would explain it to potential study participants?

At the moment, I sense that the term/concept of “arts-based research methods” might resonate with study participants because it doesn’t sound biomedical (and thus will hopefully have fewer side effects and not be as big of a risk?) Visual ethnography is a research method, of course, but I’m not an ethnographer by training and I’m not sure that that term will resonate with non-academic people. (My parents think the whole idea is insane, so that suggests that maybe other people like them will also think it sounds insane…whereas arts-based research method/approach sounds so…clean? Safe? Reasonable? Art therapy-ish?) I think this is also an indication that I really need to nail down my central questions (or at least the first clean-ish version of them) before trying to pull other people into my project. I know that these questions will change along the way, but I don’t think it will be productive to blurt out, “Come participate in my ambiguous research project where we’re going to take pictures of staircases and beds and who knows what else that can’t be measured or accounted for like the “non-subjective” bull’s-eye!” In any case, I think I need to actually read some of the arts-based research materials that I’ve culled thus far if that’s the primary conversation that I want to join. But I don’t yet know the politics of the field. Is visual ethnography taken less seriously than visual art therapy or narrative writing workshops, for instance? I guess I’ll have to try this out on a few people and find out…

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Joining the Conversation

What’s exciting about doing interdisciplinary research is that there are many conversations to join, as Graff and Birkenstein would say. (Note: this comes from my favorite writing “textbook,” They Say, I Say – http://books.wwnorton.com/books/webad.aspx?id=4294982902). As I pull my ideas together, it’s difficult to figure out how to arrange them. I talk to my students all the time about how your arrangement should be a writing decision that is inspired by your specific audience. In the case of my dissertation prospectus (which Nick says is merely a snobby word for “proposal”), my audience is my 5-person dissertation committee. However, my project will hopefully appeal to multiple audiences–both scholarly and popular (?)–so I’m trying to think expansively from the beginning.

Here is a brief attempt at physically mapping out who I am talking to and which existing conversations I hope to touch upon:

Rhetoric

**Where does disability studies go?!

  • Rhetoric of Health, Science, Medicine: A rapidly expanding discipline within rhetorical studies. Importantly, many recent rhetoric of HSM studies incorporate multiple, multi-genre, mixed, and/or interdisciplinary research methods to fully account for the HSM portions of the projects. This means that rhetoricians are reading peer-reviewed science and medical journals, visiting gross anatomy labs, participating in online chat rooms in illness communities, and so on. These new topics, virtual and physical spaces, temporalities (ha! academic word!) prompt us to consider new research methods, engage with literatures across disciplines, etc.
  • Visual Rhetoric: Historically, conversations in visual rhetoric have revolved around analyzing images similar to how we analyze texts (as “objects”). I am trying to move this work forward by thinking about how creating and circulating images (the “rhetorical construction,” so to speak) is important to understanding how knowledge is networked and reflexive and other rhetoric words. I don’t know much about this, so I need to go back and engage with this literature. Notably, most studies have been about student writing–ranging from videotaping and photographing student writers to looking at handwriting–and don’t talk much about the making portion or about other kinds of rhetorical studies/topics/objects.
  • Feminist Rhetoric:
    • Historiography: In my opinion, there is/should be a turn towards studying gendered practices instead of recovering individual women for the sake of recovering women in feminist rhetorical studies. Recent feminist historiographies tend to situate HSM issues from the past in the present (re: Robin Jensen’s book, Heather Adams’s dissertation project, etc.). I think that my project responds to a recent concern about how current women (?) rhetors will soon be lost, too, and thus need to be studied as well.
    • Multiple Methods: New topics and time periods call for multiple/new/combined methods!

Visual Ethnography

  • Visual Ethnography: Sarah Pink says that visual ethnography is specifically about learning about people’s ways of knowing vs. learning about people themselves. She argues that visual ethnographic work should be inherently reflexive, making the work more nuanced and preventing some of the previous ethical issues. Visual ethnography can include studying photographs taken by people in their communities, participant-solicited photography, digital imagery, and more. Visual ethnography specifically prioritizes images as main modes of analysis as well as objects of analysis vs. representative of something or having only one meaning. What’s interesting is that what researchers might find to be fruitful/productive/interesting might be different from what participants find to be fruitful/productive/interesting, so I’ll need to account for that in my project.
  • Visual Studies: Long history of incorporating visual work into multiple fields, including anthropology, sociology, and more recently, public health, but visuals were most supplementary and rarely the main means of analysis (vs. the object of analysis)
  • Ethnography: Long history of doing in situ work to learn about people, but in the 1980s and the 1990s, feminists and others argued against the previously lauded “objective” approaches to these studies, which sometimes included observing and writing about people without their knowledge. Recent work aims to limit these kinds of encounters…or at least be honest and reflexive about them.

Health Humanities/Arts-Based Qualitative Research*

  • Health Humanities: Area of study that has been developing since the 1980s. Contention as to whether or not it originated in the medical sphere or in the humanities. Until this point, most studies have prioritized the doctor-patient relationship and have specifically aimed to improve clinical practice. Recently, some scholars have been pushing the “health humanities” name and claiming that it implies an expanded research agenda (i.e. beyond the traditional doctor’s office related hospital spaces), but very few groups have published on it yet. There are some current publications that might fall under health humanities, but they do not necessarily identify as “medical” or “health” humanities even though they incorporate those perspectives.
  • Arts-Based Research: Nurses, occupational therapists, physical therapists, social workers, and public health experts, among others, increasingly turn to mixed and/or humanistic research methods to account for experiences of illness, biomedical encounters, and disability. Recent examples include asking female chemotherapy patients to document their experiences with illness using cameras, using photovoice, art therapy, narrative writing (Pennebaker et al. and more), etc. From what I’ve read, these methods supplement or respond to other methods, but major projects aren’t initiated based off of them. That might be changing, as I just read about an NIH-funded project at Vanderbilt that teaches teens with diabetes to create digital narratives about their illness experiences (or something–I’ll have to re-look it up), but at this point, there isn’t much beyond that.
  • Digital Storytelling: This is probably the biggest unknown at this moment. Digital stories are one of many potential “products” to come from visual ethnographies. What’s significant about products is that it can be hard to figure out which products will serve researchers and participants, honor the participants for their time and effort, and not harm anyone, even inadvertently. I think that I can use my rhetorical/teacher/ish skills to help people make visual and other rhetorical choices about how to arrange, display, and circulate their images and stories. Per the failed NIH grant, some might consider that to be “salting the mine” (i.e. prompting my participants to do something that they think I will like vs. doing something “authentic”), but Sarah Pink pretty much says that everything we do can be authentic if we honestly account for it in our own documentation and write-ups. Digital storytelling might also allow me to engage with my participants in a different way–I might create a digital story, too, and include images that they take of me. Or something. I clearly need to read more about this.

Lyme Disease: A Case Study

  • Multi/cross/inter-disciplinary: Lyme has been consistently studied in biomedical circles (including but not limited to  tick-borne disease groups, rheumatologists, infectious disease specialists, ecologists, animal scientists/biologists, neurologists, cardiologists, mental health experts, and more). This study has created a lot of contradictory data about the diagnosis, treatment, and recovery from Lyme. Also, most of these biomedical-oriented studies miss a lot about the human experience of having Lyme Disease, particularly the experience of being misdiagnosed, inappropriately treated, the expense (psychological, economic, and more) of seeking care, etc.
  • Visual: The main “non-subjective” symptom of Lyme is the erythema migrans rash (i.e. the “bull’s-eye), which is only present in about 20% of infected individuals and only present during the early stages of the disease. Compared to CFS, Fibromyalgia, and other chronic, not-completely-understood conditions with ambiguous symptoms, because Lyme has a clear, uncontested visual symptom, it makes it all the more confusing to treat with the visual symptom is not present. Perhaps accordingly, there are four standard-ish Lyme visuals that have nothing to do with ill, suffering, and/or recovering people and thus continue to shift the focus of Lyme from the human experience to the disease ecology (or whatever they’d call it). Images of ticks, Lyme spirochetes, bull’s-eye rashes, and Lyme endemic maps are seemingly unreflexively taken up by the CDC, activist groups, scientists, and more (beginning with the “discovery”/coining of Lyme by Burgdorfer et al. in 1982, as the article included photographs of spirochetes and a map of probable Lyme diagnoses in Connecticut). In turn, allowing Lyme patients to be makers of images will a) perhaps infiltrate the circuit of standard Lyme images, which definitely don’t help anyone with anything (particularly patients seeking care and treatment), and b) allow ill individuals to become authorities in their own health situations, since Lyme patients are often mis/disbelieved for a variety of reasons. Maybe these images will help Lyme patients leverage something–better care? More understanding from confused or skeptical family members? A way to communicate with other suffers and/or the general public?
  • Rhetorical: The contradictory guidelines for diagnosing and treating Lyme Disease are completely rhetorical. Not much has been discovered about Lyme Disease (in terms of scientific studies), but the statistics and “knowledge” about it changes constantly. For instance, the CDC “updated” the number of suspected Lyme cases in the U.S. from 30,000 to 300,000 in May 2015, which is a pretty huge discrepancy. Since no one can even agree on a name for Lyme/its stages (i.e. “Chronic” vs. post-treatment Lyme, etc.), it continues to be a public health concern that can no longer be investigated only via biomedical research methods.
  • Feminist: I’d like to believe that studying historically underrepresented individuals and groups is inherently feminist.
  • Embodied/in situ: I don’t believe that Lyme can only be studied by looking at the discourse. Much like how Latour and Woolgar went to the lab to learn about how research was done, I think that Lyme (and perhaps other health, science, and medical issues and topics) calls for, if nothing else, a multi-method approach. I can learn a lot about Lyme by reading peer-reviewed articles in scientific and medical journals, but I can situate this knowledge in a specific context by studying Lyme activist group websites, visiting support groups, journeying to Lyme, CT to learn about the environment that continues to breed high rates of Lyme, going to Lyme clinics like Hopkins, etc.
  • Reflexive: As a former/current/who knows Lyme patient, I want to account for my research angle and want to make sure that it doesn’t get in the way of my project or answering my research questions.

Now that I’m thinking about it, maybe this digital stuff should go in its own section?

*These are probably separate things, but I’ll parse them out later.

 

 

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Looking at Lyme

Once my eyes focused on these long snake-like organisms, I recognized what I had seen a million times before: spirochetes.

–Willy Burgdorfer, 2001

Before I submit the SSRC DPDF on Thursday, I need to do enough background research to figure out how/why Lyme Disease visuals are important to study. Ultimately, I need to figure out what the history of these images are and how and why they have been so widely circulated in order to frame my application. However, this is turning out to be more difficult than I’ve anticipated. I’ve been playing around on the internet (i.e. researching) for last hour and a half, and here’s where my web travels have taken me:

  • Google Ngram. It appears that the phrase, “Lyme Disease,” was first used in 1962, but I couldn’t figure out how to make Ngram provide a list of publications from oldest to most recent. (Or they just couldn’t list the publications from the 1960s?) The earliest things that came up were from the 1980s.
  • Google Images. A bunch of categories come up for in a Lyme Disease search: rash, dogs, symptoms, bacteria, tick, and awareness. Looking at pictures of ticks on people’s skin (particularly fingertips) was making me nauseous. How my mother earned a master’s degree in entomology is beyond me. I’m not normally grossed out by bugs (re: entomologist mother), but for some reason, the images of ticks were turning my stomach. Interestingly, this reaction is challenging my earlier claim that typical Lyme Disease pictures are rhetorically ineffective. If an image is making me nauseous, it means that it’s doing something. I’m just not sure what yet.
  • Twitter. I love using Twitter to see what people are posting about Lyme (and everything else in the universe), and I was pleased to find a few new popular articles about Lyme via the #lymedisease hashtag. I also investigated the #lymediseasechallenge hashtag and campaign, which elicited many photos (though not as many as you’d think) of people biting into limes and making puckering faces. A lot of the Lyme Disease advocacy/support groups had posted infographics (without visual data, though, so they were really just informational graphics) with a few facts about Lyme and other things that connect to Lyme. It was interesting to see how Lyme is connected to other spirochete-based diseases like syphilis and that advocacy groups compared the numbers of people diagnosed with Lyme Disease to that of HIV/AIDS, colon cancer, breast cancer, and more. My favorite, of course, were the graphics about how one might prevent Lyme Disease: wearing long sleeved shirts when out in grassy areas, checking for ticks, etc. These remind me of the ineffective campaigns about preventing rape via making at-risk groups responsible for preventing rape. Vomit. It is peculiar that Lyme advocates have taken up a similar campaign–could this be considered a kind of topos?
  • Google Scholar. Again, I was trying to pull up the earliest articles (in date order) using the phrase “Lyme Disease” and “Lyme borreliosis,” as well as a few other variations with and without quotation marks, but the publications only seemed to date back to the 1980s. I eventually realized that it would be helpful to figure out who discovered Lyme Disease and to see what this person/team published on it…and if they included any visuals! This led me to the obituary of medical entomologist Willy Burgdorfer in The Lancet (http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)60011-3/fulltext?rss%3Dyes). With his team from the Rocky Mountain Laboratories in Montana, he looked at ticks from Long Island that were suspected to have Rocky Mountain Fever. Apparently, his main contribution is that he figured out that Lyme Disease was cause by spirochetes (bacteria in a spiral shape), which helped scientists and doctors figure out how to test for it, treat it, and, for a time, vaccinate people against it. Note: This visual discovery has circulated through popular culture, and some people like me even have Lyme spirochete toys – http://www.amazon.com/GIANTmicrobes-Disease-Borrelia-Burgdorferi-Microbe/dp/B000NO9HK2. (Thank you, Emi!)

All of this led me to the journal, Science, where Burgdorfer’s team first published about their Lyme Disease discovery. “Lyme Disease” is first mentioned in the journal, which was then called Science News, in Vol. 113, No. 23 (Jun. 10, 1978), p. 375. The 318 word report discusses the discovery of the first-ever “insect-carried arthritis,” which the researchers call “Lyme Arthritis” after its discovery in Lyme, CT. Interestingly, the reports claims that this condition is most common in children, which is still true according to the CDC, and that most affected individuals life in wooded areas in the north east U.S. The report also claims that scientists suspect that it is a tick-borne illness because the accompanying rash is similar to rashes related to tick-borne disease in Europe. No visual accompany the report.

The groundbreaking Burgdorfer article (written by Willy Burgdorfer, Alan G. Barbour, Stanley F. Hayes, Jorge L. Benach, Edgar Grunwaldt and Jeffrey P. Davis) was published in Vol. 216, No. 4552 (Jun. 18, 1982), pp. 1317-1319 in Science New Series. I’ve included screenshots of the images for your viewing pleasure:

Burgdorfer_Visual1

VIsual 1: Spirochetes in Tick Vectors

Burgdorfer_Visual2

Visual 2: Spirochetes in an electron micrograph. Not sure what that is, so I guess I should look it up.

We’ll see where all of this goes?

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Research Challenge #1: Summarizing My Project

I’m applying for the SSRC Dissertation Proposal Development Fellowship, which requires that I answer a number of questions about my research. (YIKES). I’m going to try begin brainstorming responses to the first three questions on this blog…

Summarize the current topic, central problem or question, relation to relevant research literatures, methods or approaches, and broader theoretical contributions of your dissertation research project. (Please keep in mind that, if you are selected as a DPDF fellow, your abstract will be placed on the SSRC’s DPDF Program website. Use language appropriate for an interdisciplinary audience and avoid or explain disciplinary-specific concepts or jargon.) * –> (up to 150 words)

My topic is the rhetoric of Lyme Disease. I want to study what kinds of arguments are being made and by whom regarding Lyme Disease diagnosis, treatment, and recovery. In general, Lyme Disease is approached biologically–as an infectious disease–and current studies are being conducted by scientists to learn more about how/when the infection is active, how people respond to different treatments, what treatments might be most effective, how to diagnose it, etc. However, Lyme Disease can (and should!) also be approach rhetorically; that is, attending to the socio-cultural factors that have influenced the ways in which it is discussed in nonspecialist/popular and scientific communities. Science journalists in the New York Times, Washington Post, and other popular sources have begun to investigate the Lyme controversy rhetorically, and I want to follow up on these analyses by studying Lyme discourse in scientific and medical peer-reviewed journals, Lyme and infectious disease research centers, nonprofit organizations that support people with Lyme, online communities where people talk and share resources for dealing with Lyme, and more. Lisa Keranen, Judy Segal, and others are much better at explaining why a rhetorical framework is helpful for studying health, science, and medicine, so I’ll have to rely on them for some support. More broadly, I think that my project is valuable because it will a) verify that much of what we know about Lyme is completely constructed and  does not rely on the results of scientific practice, and b) how ill people can use rhetorical techniques to leverage their Lyme Diagnosis as a means of acquiring better health care.

Introduce your dissertation project for an academic reader who is unfamiliar with your particular topic, region of study, and disciplinary approach. What is the central research question, problem, or puzzle that you want to investigate? Why is your project important and timely? * –> (up to 400 words)

Lyme Disease poses a plethora of rhetorical problems for medical practitioners, insurance companies, policy makers, and most notably, for patients. Lyme Disease is caused by the Borrelia burgdorferi bacterium and transmitted through infected ticks; approximately 300,000 probable cases are reported to the Center for Disease Control and Prevention (CDC) each year, most commonly in boys ages 5-9. Theoretically, Lyme Disease is simple to diagnose and treat, and recovery should begin as soon as it is treated. A diagnosis is made when a medical provider identifies an erythema migrans (EM) (also known as a bulls eye) rash on a patient’s body and/or when laboratory blood tests indicate a positive Lyme Disease result. Infected individuals who are treated with doxycycline or amoxicillin for 14-21 days should recover completely, according to the 2006 guidelines adopted by the Infectious Diseases Society of America.

Yet the diagnosis, treatment, recovery, and even the names of conditions associated with Lyme Disease are sources of fierce contention in U.S. patient and medical communities. Since the EM rash is not always present, many patients receive multiple inaccurate diagnoses based on Lyme’s ambiguous symptoms–extreme fatigue, joint pain, stiff neck, swollen lymph nodes, headaches, and more–and thus do not respond to traditional treatments. Importantly, 10-20% of Lyme patients continue to suffer from these symptoms after their initial infections are treated. This phenomena called “Post-Treatment Lyme Disease Syndrome,” or in some circles, “Chronic Lyme,” has shifted in recent years from a concept circulated in alternative online patient communities to an accepted concern for mainstream patients, media sources, and researchers alike. Some doctors are even calling themselves “Lyme Literate Medical Doctors” (LLMDs) as a way to indicate their expertise with experimental Lyme Disease diagnostic techniques and treatments.

My dissertation takes up Lyme Disease as a case study to reveal the rhetorical complexities inherent in diagnosis, treatment, and recovery from illness. I aim to examine the rhetoricity of Lyme Disease and investigate how people in various Lyme Disease communities leverage aspects of the condition to achieve particular goals. Lyme Disease is one of many conditions that prompt us to consider how diagnosis, treatment, and recovery are constructed rhetorically and for different means. However, the paradoxes inherent in Lyme’s disease lifecycle uniquely illuminate the complex points of encounter between medical practitioners and patients as they–together and separately–confront illness.

My project is important and timely because there is a  steadily increasing number of ill people in need of care and treatment.

  • Public discourse about Lyme is quickly evolving–the transition from Chronic Lyme to Post-Treatment Lyme Disease Syndrome is just one example–and researchers, medical providers, patients, and advocates need to figure out how to respond to the increasingly controversial arguments about diagnosis, treatment, and recovery.
  • A new research center at Johns Hopkins University opened in April 2015 to specifically answer questions and solve problems related to Lyme Disease.
  • Hmmm…

How do you expect your dissertation project can draw from and contribute to existing literature about the topic in a novel or interesting way? * –> (up to 400 words)

My dissertation project is innovative because it will draw from existing peer-reviewed science and medical journals, as well as existing narratives from patients with Lyme Disease, and put them in conversation. Research in the medical and health humanities suggests that medical providers do not read (and thus do not respond to) publications in humanities journals about medicine. (I need to do some research about if and how providers read and respond to patients’ illness narratives?).

  • We can get to the root, so to speak, of some of the rhetorical problems with Lyme by historicizing it. I aim to conduct a rhetorical archeology of Lyme to identify the shifts in its naming and diagnosis.
  • I hope to get at rhetorical analysis via a number of vehicles beyond traditional textual analysis. Like T. Kenny Fountain, I might take an ethnographic approach to some of this work. Hmmmm…
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