Our October 2024 LMCC meeting took place on Wednesday, October 30 at 5:30pm in UNC’s HHIVE Lab (Greenlaw 524) and via Zoom. We discussed My Imaginary Illness: A Journey into Uncertainty and Prejudice in Medical Diagnosis (Cornell UP, 2011) by Chloë G. K. Atkins.
Specifically, we focused on the following:
- Foreword by Bonnie Blair O’Connor (pp. xi-xv)
- Introduction (pp. xxi-xxxi)
- Ch. 17: “Gravy” (pp. 140-152)
- Suggested reading: Any additional chapter(s) of your choice, such as Ch. 1: “Beginnings” (pp. 1-5)
If you missed the meeting, you can still access the text on the Readings page of this site!
You can also access the recording of our meeting here.
All of our meetings this semester will take place at 5:30pm eastern time on the last Wednesday of each month in the HHIVE Lab (Greenlaw 524) with options for people to join via Zoom as well.
Our next (and final) meeting of the semester will take place on Wed. Nov. 20. We’ll be posting information about our November meeting soon!
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Atkins, Chloë G. K. My Imaginary Illness: A Journey into Uncertainty and Prejudice in Medical Diagnosis. Cornell UP, 2011. https://doi-org.libproxy.lib.unc.edu/10.7591/9780801459948.
Meeting Notes (courtesy of LMCC Co-Director Mindy Buchanan-King):
- Desire: Atkins’ layering: pretext in the space of the office; the body is a text, the narrative is another text linked to the body, but also outside of the body; and the engagement with clinical notes; a culmination site
- Paul: Refusal to extrapolate information, what gets enmeshed in the diagnosis; notes physician reviews of Atkins’ work, which is both sympathetic but labels patients as “difficult”
- Question of empathy and nursing; medical institutions as care centers, but undermining that, by distinguishing care from treating
- Desire: Veil of objectivity that medicine aspires toward; the experience of developing a certain affinity toward statistics, which are skewed/unbiased; thinking about commitment to conventions of place and space—interactions with technologies (CAT scan, MRI) and what that produces; gendered lens of thinking of the roles of the patient, doctor, and nurse, and add the layer of gender; What would “successful” look like for Atkins?
- If this role (nursing) does not have an empathetic structure, how are they differentiated from doctors?
- Camille: Emotional labor left to nursing, nurse practitioners; providing specialty services, and how physician specialists view their role, versus nurse practitioners and the questions of patient care—a lot of emotional labor is being put on there, as well as more patient care
- Desire: Thinking about culminating: a body, bodies, that create a certain type of body; critical psychological care of having attendants do particular work, coming in contact, the proximity; so much of what Atkins is doing is critiquing a particular language, that it’s medico-legal, a linking; also economic questions, those processes become part of the diagnostic process; requires a reshaping of what is happening
- Camille: The physicians behind the scenes also use moralistic language, but when asked to make sense of their role, it was a different positioning; Atkins and standard of care, not fitting a diagnosis; there’s not an easy answer, question of off-label prescribing, because physicians are also at risk for operating outside the standard of practice; Atkins as being an outlier, but it’s understandable for the physicians to consider risk
- Desire: Not so much teamwork, but being at the mercy of medical institutions; you have to protect yourself, but you’re one person among so many; the kind of work being done is critiquing the narratives
- Paul: There are problems, and it’s easy to focus on the individual dismissiveness, but seeing it as a systematic issue; there is an entanglement of fields, of legal, economic, etc. There are individual failures, but there are systemic limitations; the complexity is staggering
- Desire: Interesting to encounter this in the narrative form Atkins is taking; variety of paragraph lengths and the textual space she uses; physicians “blaming” patients, Atkins balancing frustration but acknowledgment that the system is broken, but “blaming” seems to be a moment of breaking; it’s not a weakness, but a moment of something different
- Camille: Not a ton of self-reflexivity; parts of the narrative were problematic, but when she talks about getting better, she talks about her tenacity and stubbornness, which is a neoliberal take, she is in a very privileged position, she has so much cultural health capital
- Desire: Where her critiquing her own whiteness would fit?
- Carmen: Read the book, a good read; felt like Atkins felt she was flippant about her privilege? One point when she couldn’t afford a house, but she receives money from family and friends, and lives off of that money; she doesn’t acknowledge how her privilege shielded her from the worst she was experiencing; because of her parents’ wealth, she had access to money
- Sterling (chat): Bringing up her privilege while discussing medical text that follows you would be a good point to mention the struggles others face
- Paul: Maybe pointing out/imagining how others may not have experienced the same thing; even the first chapter makes some assumptions about privilege, e.g., going to graduate school; privilege between the lines
- Camille: The fact that she pulled in theory, attacking/critiquing the medical system from a structural perspective, then there are some things that should be considered
- Paul: Idea of blame: The definition of psychosomatic still suggests this is an unconscious disease, so why treat it as conscious?
- Camille: For Carmen, how did the doctors talk about how she ended up on a ventilator? How could she will herself onto a ventilator?
- Carmen: There was a point when the doctors needed to do some kind of procedure to help her breathe, and the healthcare providers were telling her she wasn’t trying hard enough to breathe; in general, healthcare providers tend to blame you for your symptoms if you’re taking up too much of their time
- Desire: Having a discussion of where reflection would fit in; seemed to be more of an illness narrative, understanding her experiences in context, and not dictating how the narrative should be structured; should be a series on “Culture and Politics”
- Paul: How the intro is coded and framed in this discourse; the biomedical approach, and the focus on empirical framework and the idea of a body not following the rules; the symptoms are illegible, but there’s a biomedical belief that your body should be legible
- Desire: How categories contribute; there were serious things happening, but not enough to codify—enough boxes checked—for that segment of the medical field to see what’s happening; she’s encountering so many different specialties, and the weight of who gets it wrong; there is an entire professional field that has developed, but the communication breakdowns exist
- Camille: When she finally got everyone in the room, the realization that it would never happen in the U.S.; deciding whose domain it is; fibromyalgia used to be rheumatology’s domain, then pain management, then primary care; these patients are bounced around from clinic to clinic
- Desire: The mobility where there is the ability to ignore elements, not spending time; affordance for being taken seriously
- Paul: Symptoms that come and go, and flare up and dissipate; when you finally get to the specialist you get to see, the symptom may not be there/recency bias; how definitions keep changing, as in DSM, the malleability of conditions under the guise of something that is rigid; trying to navigate a system that bounces you around
- Desire: How Atkins’ story nudges us in the same direction of thinking, about tiers of humanness; the more her story gets taken up, the less human she is; this thing that can bounced around, what can be moved and pushed around; what happens when you walk into a clinic and you’re already coded as not human? If that box is not immediately checked off, that changes the narrative
- Paul: The “rap sheet” (medical records) and reducing a human to a list of symptoms, how healthcare providers are influenced, even on an unconscious level
- Sterling: The medical text that follows you around, a layer is the stereotypical (e.g., the mad Black woman); working in a pharmacy, pharmacists have authority to say yes or no to a patient, it’s up to the pharmacist to take that patient, and implicit bias gets baked into that decision
- Desire: There is a coding to medical language that is not visible; even language that deals with the personality and including it where it doesn’t belong; thinking of what is refused care? That’s language that is used, but it doesn’t narrativize the terms of refusing care; multiple gates and multiple keepers that Atkins touches on; is her healthcare provider going to accept or reject her? You can’t just expect access
- Paul: Threatening to the idea of a hospital as a place of care; Atkins relocated at the end of the narrative, but what if that person shows up with wildly different prescriptions each month? How is that context communicated?
- Camille: Added two files, “Illnesses You Have to Fight For” (Dumit); another article on pharmacy gate-keeping
- Paul: Thinking about things intended to be positive, but have negative consequences; the reaction to the opioid crisis is making it more difficult to get prescriptions; it makes people more vigilant, but it’s gate-keeping
- Surasya: Thinking of Sontag’s Illness as Metaphor; contextualizing holding patients accountable for their illnesses; dichotomy between functional disorders and psychosomatic, but the dichotomy is there in questions about obesity, smoking, etc.; applications outside of the medical institution, like accessibility; how does the lack of medical perspective influence our daily lives?
- Paul: What is that conversation like, when Atkins brings up in the end her behavior that may appear different (wearing wraparound sunglasses, etc.); behaviors that may negatively impact evaluations, what does that language look like?
- Carmen: Linking the last reading and the Retrievals podcast: women’s pain not being taken seriously; Atkins was experiencing the same dismissal; Atkins’ story also speaks to the reading on hypochondria; women being skeptical of healthcare providers being able to provide care and diagnosis
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Note: The Featured Image for this post is a photograph of Chloë G. K. Atkins, author of My Imaginary Illness, courtesy of http://myimaginaryillness.com/.