What was lost, missing, sought and hoped for: Qualitatively exploring medical crowdfunding campaign narratives for Lyme disease, 2020, Vassell et al

[Dolphin]

For what it is worth:
https://journals.sagepub.com/doi/abs/10.1177/1363459320912808

What was lost, missing, sought and hoped for: Qualitatively exploring medical crowdfunding campaign narratives for Lyme disease

Anika Vassell, Valorie A Crooks, Jeremy Snyder
First Published March 23, 2020 Research Article
https://doi.org/10.1177/1363459320912808
Article information


Article Information

Article first published online: March 23, 2020

Anika Vassell, Valorie A Crooks Jeremy Snyder
Simon Fraser University, Canada

Corresponding Author:

Valorie A Crooks, Department of Geography, Simon Fraser University, Burnaby, BC V5A 1S6, Canada. Email: valorie_crooks@sfu.ca

Abstract

Lyme disease remains a contested illness in Canada, thereby making the diagnostic and treatment journeys difficult for some people. One outcome of this is that increasing numbers of people are turning to medical crowdfunding to support access to alternative therapies, non-local health care providers and assist with managing the costs of everyday life.

In this analysis, we qualitatively explore the narratives shared in Canadians’ crowdfunding campaigns to support Lyme disease treatment or diagnosis to identify whether or not any common elements shared in these narratives exist, and if so, what they are. We identified 238 campaigns for inclusion from three prominent crowdfunding platforms.

Thematic analysis of the campaign narratives shows four consistent themes shared in these campaigns: what is lost (e.g. bodily ability), what is missing (e.g. local care options), what is sought (e.g. funds to cover treatment abroad) and what is hoped for (e.g. return to wellbeing).

These themes demonstrate the highly personal and emotional nature of medical crowdfunding, particularly in the context of a contested illness that may lead some to question the legitimacy of one’s financial need.

This analysis contributes valuable new insights to the nascent scholarship on medical crowdfunding, and particularly to our understanding of how people communicate about their health and bodily needs on this public platform.

It also identifies important directions for future research, including the potential for crowdfunding narratives to be used for advocacy.

Keywords contested illness, illness narrative, Lyme disease, medical crowdfunding

 

[rvallee]

https://sci-hub.tw/https://journals.sagepub.com/doi/abs/10.1177/1363459320912808

It's really hard to competently describe something when you don't understand at all why it is happening. It's not especially bad but very naive and trying to make sense of difficult circumstances without being able to see the difficulty. The framing is roughly that this is a life narrative, that the underlying problem clearly can't be a real issue and the narrative only exists to "explain" something else that isn't discussed here.

Many of the same things could be written about COVID, similar things are happening even though there are enormous resources being mobilized to deal with it. I see people talk about their experience and symptoms with COVID all the time. It's seen as "normal" because it's accepted to be happening. They're not "narratives", though, they're just people relaying their experience and listing things that happened, accepted as fact without a need to interpret alternative meanings. But since the experience is denied here, then it must be some separate narrative that finds meaning in what is roughly believed to be a cultural phenomenon, or something like that. At least it refrains from making baseless assertions.

There is such a pressing need for meta-psychology, for people to examine why is it that people use psychology to create narrative explanations based on their own biases and beliefs without being able to see that this is what they are doing, that the "narrative" is entirely superfluous and only exists to fabricate an explanation to observers.

Very telling that one of the thing that's missing about "what is sought" is the thing that is sought the most: research funding. This is the number 1 thing people with discriminated diseases are asking for all the time and still when someone tries to record a narrative experience of "what is sought", they don't even see or acknowledge it. Really bizarre. I guess it must have to do with the belief that we don't actually want or believe in science and therefore those demands are probably not sincere.

False attribution error syndrome sometimes presents itself with mild symptoms. Better than in its acute aggressive form but otherwise still pretty useless. Or maybe Rube Goldberg syndrome is a better fit, trying to overcomplicate an explanation because Occam's razor is seen as invalid, somehow. Rube Golderg's blunt mace of bluntness is truly the bluntiest of instruments.