Doing Bodies in YouTube Videos about Contested Illnesses, 2022, Groenevelt

Open access
https://journals.sagepub.com/doi/full/10.1177/1357034X221134436
Research article
First published online December 12, 2022

Doing Bodies in YouTube Videos about Contested Illnesses
Irene Groenevelt
Sanneke de Haan
and Jenny Slatman

Volume 28, Issue 4
https://doi.org/10.1177/1357034X221134436

Abstract

This article is based on an online ethnographic study of Dutch women who use YouTube as a medium to document their contested illness experiences.

During 13 months of observations between 2017 and 2019, we followed a sample of 16 YouTubers, and conducted an in-depth analysis of 30 YouTube videos and of 7 interviews.

By adopting a ‘praxiographic’ approach to social media, and by utilising insights from phenomenological theory, this study teases out how bodies are ‘done’ in (the making of) these YouTube videos.
We describe three types of bodies:
(1) inert bodies,
(2) experienced bodies,
and
(3) authentic bodies.

Ultimately, this study shows how vlogging about contested illness is a practice in which bodies are continually (re)configured, and through which the ‘invisibility’ of a sufferer’s condition can obtain social visibility.

 

It reads as though it was written by a poorly performing AI

 

or three cultural theory graduates.

 

Trying to redefine advocacy for discriminated illnesses as some sort of cutesy thing is seriously creepy as hell, extremely infantilizing. For all the lies about having learned lessons from the AIDS crisis, medicine still shows they simply don't respect patients, basically try to describe us like we're cute-but-very-dumb bunnies who just need to be shown where to happily hop.

They basically and genuinely do not have a theory of self about patients, the idea that we could know anything about our own bodies is basically absurd, to the point where they actually use patients accurately predicting it and concluding it must be an error, it can't be true, must be the fact that those are beliefs and those beliefs themselves cause the illness, or whatever.

You can falsely attribute people's behavior to whatever you feel like, but not only it ain't science, it's the exact opposite of science. I've just seen some dude talk about FND as "cutting edge medicine" (for the 19th century I guess) even though it's the exact same concept as in the 19th century. Medicine is turning into something even worse than folklore, it's basically, I don't know, lordlore, essentially the same process but the beliefs are generated and perpetuated from above and projected onto the population, instead of coming from it.

Maybe prolore, lore coming from professionals so they can excuse their own ineptitude. I keep seeing stuff like "walking for 30 minutes in nature alleviates symptoms of major depression" and other nonsense. It's like nothing matters, there is simply no connection anymore between reality and what healthcare systems are trying to do in far too many areas, so much that the parts based on science become questionable as well, since it's obvious that the prolore has crept every-freaking-where.

 

Despite being steeped in confusing language, there's definitely a kernel of truth here. Many people with complex illnesses are disbelieved because it isn't visible, and this struggle to express their sympoms and feelings in a way others understand.