Tag Archives: Chronic Lyme

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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“Patient” vs. “Health Seeker”

I was talking to my friend/colleague/research partner Jen about my attempts to visually document my pain and patient-hood through body part selfies over frozen yogurt on Friday afternoon. During the conversation, she asked me a deceptively simple question: “Why are you attached to the word ‘patient’?” I quickly replied that I understand patient-hood as an identity that is necessary for ill people to claim in order to receive appropriate care. In my experience, medical providers must somehow read* me as an ill person before they are willing to present treatment options. (I mean, why would you try to treat someone who isn’t sick?)  As usual, Jen brilliantly presented me with a compelling alternative term: health-seeker/health seeker. Over the course of our conversation, we agreed that this term might have particular affordances, i.e. benefits over “patient.” (Note: “affordances” is a popular term in rhetoric and composition studies right now, and it’s helpful for me to practice the lingo). Here are a few definitions that highlight some of these affordances via a brief Google and OED search:

Patient (adj., n): from the Oxford English Dictionary


Having or exercising patience.


Enduring pain, affliction, inconvenience, etc., calmly, without discontent or complaint; characterized by or showing such endurance.


A person receiving or (in later use) registered to receive medical treatment, esp. at a particular establishment or from a particular practitioner; a person staying in a hospital for medical treatment.


A person who suffers from an injury or disease; a sick person. Obs.


A person who or thing which undergoes some action, or to which something is done; a (passive) recipient. Chiefly in contrast with agent.


Health-Seeker/Health Seeker (n):

1832   Chambers’s Edinb. Jrnl. 1 113/2   When a health-seeker takes a walk, he keeps his coat wide open.
a1953   D. Thomas Under Milk Wood (1954) 23   There is little to attract the hillclimber, the healthseeker. (from the Oxford English Dictionary)

Health seekers are mostly interested in investigating specific physical and mental ailments and their searches often are tied to visits to the doctor. However, they do not use the medical establishment or even friends to help guide their online searches when it comes to health care. Most health seekers treat the Internet as a vast, searchable library, relying largely on their own wits, and the algorithms of search engines, to get them to the information they need. Asked about the most recent time they got health-related information online, more than 30% checked out four or more Web sites. Younger health seekers and those with relatively high educations (at least some college-level work) are the most likely to have looked at multiple sites. (from a Pew Research Center study).


We define “health seekers” as all children, youth, teens, adults and families whose successful pursuit of health and well-being requires continuously supportive relationships and environments.” (from the YMCA of the Prairie).

Note: Apparently there is also a game called HealthSeeker, which uses social networking as a way to help people manage their diabetes.

My informal search revealed that “health seeker”/”health-seeker” is most commonly discussed a) in terms of the internet as a place for seeking healthcare information and b) at the intersection of religion and medicine. Fascinating.

As a budding rhetorician, I am deeply invested in naming as a political and cultural practice. I am especially interested in how ill people create new names for themselves. For instance, Jenni Prokopy, creator of ChronicBabe.com, calls herself and the other sick “chicks” who visit her website “Chronic Babes”; Marisa Acocella Marchetto similarly names herself a “Cancer Vixen” in her graphic memoir. They have rejected the term (and perhaps the identity of) “patient” in both its noun and adjective forms. They seem to enact more of a “health seeker” persona–researching specialists and possible treatments, endeavoring to live healthy lives despite illness, etc. I mean, I can’t blame them for not wanting to come across as weak, dis-agented, receivers of treatment. Yet I wonder if “patient” can still be useful, and if and how we should use it.

Later, it occurred to me that I hadn’t considered that the rhetorical problem of naming “patients” is just one of the naming issues at stake for ill people. Much of what has bothered me in my experiences as an ill person is my medical practitioners’ desire to too quickly diagnose–i.e. provide a name–for my collection of symptoms. I have found that “fibromyalgia,” one of my official diagnoses, has worsened the quality of my care and interactions with providers because so many providers do not believe that fibromyalgia exists, and thus, they immediately dismiss my case. The underlying stereotypes about ill women attached to such diagnoses certainly haven’t improved my ability to access effective treatments nor see higher-level specialists. In fact, I was able to get a referral to a top clinic at Johns Hopkins University when one doctor identified me as a potential Ehlers-Danlos Syndome case.

Preliminary Conclusions: It seems that I don’t even have to talk about the controversy of “Chronic Lyme” vs. “Post-Treatment Lyme Disease Syndrome” to make a case for the importance of naming for ill people. I guess there is a lot more to investigate….

A yellow-tinted photo of my knees and calves due to bad lighting in my living room. Rolled up purple sweatpants are visible.

Lyme Selfie #3: knees and calves. I think the color is so weird because of the dim lights in my living room. I’m surprised that I’m not in much pain today even though it’s 80% humidity and supposed to rain this afternoon. Gotta be thankful for moments of peace when I get them!

*”Reading” patients – I’m using this as a synonym for “assessing,” especially during intake sessions. I wonder if this is a common term or a writing thing that I’m superimposing on the biomedical sphere. If other people use “reading” as a verb in this sense, I think it adds to the current conversation about medical literacy….to be continued.

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