Shame, (In)visibility, and Ill Feelings, 2025, Cheston

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Free fulltext: https://muse.jhu.edu/article/975548

Shame, (In)visibility, and Ill Feelings

Katharine Cheston

Abstract:

Alice Hattrick’s Ill Feelings (2021) is a “genre-bending” long-form essay; its title’s dual meaning underlines the entanglement of symptoms and shame that occur when illness is seen as having no explanation.

This paper brings Ill Feelings into dialogue with a spoken account of unexplained illness to illuminate the distinct ways in which it shapes both lives and texts.

The shame that occurs for those living with “ill feelings” is characterized by a sense of (in)visibility: by feeling simultaneously seen and unseen.

I investigate how diagnostic labels employed in these contexts render suffering and sufferers (in)visible, and illuminate how fusing genres offers Hattrick a particular form of (controlled) visibility.

Finally, I consider the implications of this analysis for our broader understanding of shame, and for our approach to literary life writing.

Keywords: shame, (in)visibility, life writing, diagnosis, genre

Cheston, Katharine. "Shame, (In)visibility, and Ill Feelings." Literature and Medicine, vol. 43 no. 1, 2025, p. 153-176. Project MUSE, https://dx.doi.org/10.1353/lm.2025.a975548.

Skimming down on this, there are lots and lots of references to ME/CFS
 
It's an important essay. Thank you for making me aware.

I can say that my experience is very different. (First episode in 2017, moderate since 2020, diagnosed 2022)

Most people simply don't know and have never heard of ME/CFS. In the German speaking countries (with the lead in politics and university hospitals in Berlin, Munich, and Vienna and with a lot of media coverage due to the pandemic) it got better known over the past years as a debilitating somatic and not yet fully understood illness. In the public the stigma still somewhat exists but it has somewhat moved over to "Long Covid".

I think that an important thing that patients should be taught and supported with is how to make sure to find doctors and therapists who have let go of psychiatric explanations of ME or have never bought into them. And how to recover quickly from a visit to a doctor who does, why to never go back, and certainly not take the shame.

In the article the person with ME takes some pride in teaching her therapist about "fatigue" being a symptom and ME/CFS being a distinct syndrome.

But what's really necessary is to teach patients that it is not our job to teach a free continuing education on ME/CFS but how to find health professionals who are experts for ME/CFS. And where to find help as long as you're on a wait list.
 
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