Thesis Afflicted Epistemology: Knowledge, Illness, and New Media After “Truth”, 2025, Annika Nilsson

[Dolphin]

Afflicted Epistemology: Knowledge, Illness, and New Media After “Truth”
by Annika Tara Nilsson

A dissertation presented to Washington University in St. Louis in partial fulfillment of the requirements for the degree of Doctor of Philosophy

Some of this can be read for free here:
https://www.proquest.com/openview/f...85e77/1?cbl=18750&diss=y&pq-origsite=gscholar

 

[Jaybee00]

Nilsson, Annika (Washington U., St. Louis) "Grassroots Science: Patient Research Practices in Online Complex Chronic Illness Communities"


ANNIKA NILSSON, then a graduate student at Washington University, St. Louis, Missouri, received a grant in October 2021 to aid research on “Grassroots Science: Patient Research Practices in Online Complex Chronic Illness Communities,” supervised by Dr. Talia Dan-Cohen. This project sought to understand how people living with complex, medically underdetermined chronic illnesses advocate for themselves and produce knowledge about their conditions through informal research and self-experimentation mediated by online forums and support groups. While public discourse often describes these activities as a potentially dangerous rejection of medical authority, the participants in this research resorted to online research and self-experimentation only after conventional medical care proved ineffective or inaccessible. They understood their departure from conventional medical care as temporary and driven by the urgent need to address their symptoms, rather than as a rejection of the conceptual, scientific underpinnings of medical science. Participants in chronic illness forums used narrative as a tool for both knowledge-making and public-facing advocacy. In patient-centered forums, users collaboratively analyses of narrative accounts of one another’s’ illness experiences in order to identify patterns, in an approach that emphasized how differences between individual bodies, histories, and contexts influence illness trajectories. In public-facing settings, emphasis on promoting audience identification through brevity and broad relatability came at the expense of authenticity, particularly for marginalized participants. Thus, the effort to improve circumstances by seeking to broaden public awareness and empathy may in fact further obscure the structural causes and consequences of complex chronic illnesses.

https://wennergren.org/grantee/annika-tara-nilsson/

 

[rvallee]

While public discourse often describes these activities as a potentially dangerous rejection of medical authority

Attribution to a vague "public discourse" does a disservice here, twice over, in that it's the complete opposite, described by the people doing exactly that (not in the thesis, I mean in general, this discourse originates from and perpetuates out of the medical profession, injected into public awareness).

We obviously don't reject medicine, medicine rejects us. Explicitly. Hence why the most common complaint is that we keep going to see them. It's all over their literature, damnit. It's actually very simple, and very important to point out. Especially as this problem is systemic. A similar framing of AIDS activists could just as easily have described them as rabid terrorists, when they were actually reacting in a perfectly rational way to being literally left to suffer and die. And they did far more extreme things than we ever even thought of. Rightfully, I might add.

The root cause problem here is that it completely ignores the agency of the medical profession, which makes those choices explicitly and without shame or concern for consequences, so confident that they are in being correct that they don't bother further than simply stating they are correct and that's final. All of this is a choice. They do explicitly reject us, it's a strictly one-way rejection. It's not a feeling, and it's certainly not us who reject them, this idea is QAnon level of ridiculous, it flies in the face of literally all evidence.

Plus the weird psychobehavioral stuff isn't even medicine, so it makes even less sense. It's just weird ideology and superstitions, make a mockery of the goal and intent of medicine.

Thus, the effort to improve circumstances by seeking to broaden public awareness and empathy may in fact further obscure the structural causes and consequences of complex chronic illnesses.

This is not on the public. The public has nothing whatsoever to do with this. This is 100% the fault and responsibility of the medical profession. They are the ones lacking in empathy, and professionalism, and basic ethics. They make horrible choices imposed on us, entirely devoid of all empathy, and those have terrible consequences, including the general public following on their lead and not giving a damn.