title: When medical cure is not an unmitigated good.
abstract: The impact of chronic illness on patients has been discussed extensively, but little attention has been paid to the reverse situation: the need for patients who have been chronically ill since childhood to adjust to health and normality in adulthood. Drawing upon the narratives of two adults with childhood onset diseases, this paper provides a new perspective about the transition from chronic illness to health after a successful transplantation. We analyze from the patients' perspective the unusual disruptive impact of overcoming illness in such situations. The process of becoming cured affects their identity, leaving them unable to restructure their self within health and normality, in the same way as others are unable to adjust to chronic illness. Health care providers and families must pay more attention to the losses and life changes these patients undergo after being cured, and to their specific needs in the post-transplantation situation. We hope to offer insight into ways to prevent and address the difficulties and suffering in such situations, which may become more frequent as more therapeutic options become available for adults with childhood onset diseases.
authors.affiliation: Department of Medicine, MacLean Center for Clinical Medical Ethics, University of Chicago, USA. ko2145@columbia.edu
authors.forename: Kristina
authors.initials: K
authors.lastname: Orfali
authors.forename: Lisa
authors.initials: L
authors.lastname: Anderson-Shaw
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001294:Attitude to Health; D002908:Chronic Disease / Q000523:psychology* / Q000534:rehabilitation*; D006233:Persons with Disabilities / Q000523:psychology / Q000534:rehabilitation; D005260:Female; D006304:Health Status; D006801:Humans; D007398:Interpersonal Relations; D008016:Life Change Events; D033262:Narration; D012803:Sick Role; D012944:Social Support; D013315:Stress, Psychological; D016896:Treatment Outcome