Chronic Concealment and Awareness in the Affective Worlds of Young People Living With Chronic Illness, 2024, Harper

https://journals.sagepub.com/doi/10.1177/10497323241304571

Open access
Research article
First published online December 4, 2024

Chronic Concealment and Awareness in the Affective Worlds of Young People Living With Chronic Illness
Imogen Harper imogen.harper@sydney.edu.au, Alex Broom , and Katherine Kenny

Abstract

From the onset of chronic illness, a variety of challenges emerge—challenges that both persist and evolve as life progresses.

For young adults living with chronic illness, the age-specific difficulties of becoming ill while young form a foundation that shapes their experience of illness in enduring ways.

This paper draws on a series of in-depth qualitative interviews with 33 young adults (aged 19–29 years old) living with a range of chronic illnesses, including fatigue syndromes, auto-immune diseases, and neurological conditions.

Participants demonstrated an emergent chronic consciousness of how others perceived their health, which created a series of fraught affective tussles centered on relational recognition and feared judgment.

This article explores the difficulties and concerns participants had when communicating the nature and realities of illness; the emotional toll of attempting to avoid attention and judgment from others regarding their conditions; and the ways in which others could productively and sensitively acknowledge participants’ illness experiences.

We demonstrate that the process of learning how to navigate these issues was one important way that participants began to integrate their illness (and its implications) into their emerging sense of self and adult life.