Chronic Illness and Representation

Chronic illness is a prevalent human experience and will continue to be so as many illnesses become manageable and liveable but not curable. When Covid-19 hit during the making of this special issue, we saw the reality of this as many people who were able to survive it became chronically ill as a result, with symptoms that are often difficult to manage. This has once again showed how chronic illness as both an embodied experience and an ontological category is something that will continue to be present in our lives and should be taken seriously by activists and disability studies as a discipline.Although most patient associations concentrating on particular chronic illnesses focus on medical research, eradication, and cure, and ask for funding for these purposes alone, cure may not always be possible, at least not in the short term. Furthermore, the sole focus on cure can be problematic because it moves the attention from the other pressing issues being experienced by people, such as difficulties accessing social care and medical support, as Eli Clare has highlighted in his work (Clare). It is important that we ask ourselves how to live well with chronic illness and what factors have a bearing on this.Culture plays a major role in how we understand disability and chronic illness (Bolt, Metanarrative of Blindness; Bolt et al.; Bolt, “Social Encounters”). Representations of chronic illness may provide people with an initial understanding of this experience, so it was important for us to investigate what representations are telling us about chronic illness in the present moment. While representations of disability have continued to change and evolve, and Journal of Literary and Cultural Disability Studies is an important archive of this evolution, it is imperative to dedicate some attention to where we are in terms of representations of chronic illness.