Growing up, ill: Uncovering the experiences of young people living with chronic illness

Abstract

Chronic illness in young people is routinely underacknowledged and underreported. In general, pain and illness are represented as the exception rather than the rule for young people, however experiencing chronic illness when young is not rare. Rather, it is misunderstood, unrecognised, and hidden. This speaks to how the experience of chronic illness when young is entwined with social expectations, histories of discrimination and silencing, and current institutional and political failures. I examine this complexity in order to interrogate the ways in which current understandings of illness fall short, and consider what social, cultural, and healthcare changes are needed going forward.

This thesis is based on 33 in-depth interviews with adults aged 19-29 years who live with a range of diagnosed and un-diagnosed physical health conditions. The breadth of this participant criteria is an attempt to decentre institutional categorisations of disease and instead focus closely on how people construct and negotiate chronic illness in their lives. With reference to emancipatory sociological theory and critical disability studies, I seek to explore how individuals’ experiences of chronic illness interact with the social and institutional judgement and neglect they face.

I argue that the marginalisation experienced by my participants is often caused by persistent failures to listen to young people, the enduring stigmatisation of chronic illness, and a socio-cultural environment that does not accommodate uncertainty, complexity, and vulnerability. I further argue for an understanding of chronic living while young that better incorporates the shifting meanings and expectations of youth, the multivalent tensions around visibility and recognition, the ambivalences and potentials of online worlds, and the fluctuating salience of diagnosis. This provides new and adapted conceptual frameworks to better understand the complex experiences of young people living with chronic illness.