This patient is a hidden messenger: NF2, watchful waiting, and records of care
“Watchful waiting” is a medical approach that delays radical intervention, like surgery, but depends on regular imaging and patient self-scrutiny. To explore its social effects in a single case, I conducted an autoethnography of my patient archive from my diagnosis and 17 years of watchful-waiting treatment for neurofibromatosis, type II, a genetic disorder. I show how watchful waiting encourages self-surveillance and the stress it causes. I also discuss how the personal medical archive, with its complicated structure of reports, CDs, and notes, is a tool for communication as well as a cause of moral obligation for the patient. I contrast these uses with information studies of medical records that focus on records’ collaborative use within medical institutions. I conclude that my case has been held in stasis, reinforced by diagnostic surveillance that I participate in, due to the vagueness of “watchful waiting” as a treatment protocol and the uncertainty of more invasive treatments themselves. Through this study, I recenter patients and their needs in the discussion of medical archives and contribute to the collective recognition of disability through the genre of the illness narrative and the method of archival ethnography. I consider how my results conflict with general calls for “open notes” in medical care and cultures of life-logging and -tracking.
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