I was going to respond directly to Kristen’s post, but I don’t think WordPress lets you put hyperlinks in response comments.
It’s an interesting question, worth unpacking a little. If we agree that it’s important to respect phenomenological and subjective experience, does that mean that individuals should be free to adopt any medicalized identity as long as it doesn’t cause them harm (there are no clear negative health effects of avoiding gluten unnecessarily)? This is complicated by the way that illnesses do important work of identity formation, with illness subjectivities providing potential access to valuable forms of community and social capital- particularly in the age of internet fora and support groups (we’ve looked at this a little bit in class with Nguyen). It’s a fascinating new world of bottom-up creation of categories that are simultaneously illness and empowerment- Gillick’s analysis of jogging is a kind of precursor to this new proliferation of medicalized subcultures that are only taken up by the DSM once they reach a critical mass online. Are these conditions counterhegemonic, or just another example of technologies of the self ultimately serving the interests of governmentality? Lots of good possibilities for future research here.
Just to be provocative, if you’re OK with claims of gluten intolerance whether or not there’s a biomedical justification, how do you feel about pro-ana? Or about body integrity identity disorder, the conviction that one is healthy apart from the burden of a limb that does not feel like it belongs on your body?
The bioethicist Carl Elliott (always worth reading) wrote a great essay on BIID several years ago, and pointed out that the disorder really grew only once people were able to discuss it laterally on the internet, unmediated by the medical establishment. It’s as if the discourse actually created the symptoms in people’s bodies, in a kind of Sapir-Whorf effect.
There are lots of examples of this. This American Life just did a nice piece on the strange world of ASMR, a condition (labelled and given its properly medical-sounding acronym not by doctors, but by the online community) that makes videos like this intensely pleasant to watch. Do new illness communities develop because individuals first have symptoms, and can now discover similarly-wired people on the internet, or does the category to some degree create their somatic experience?