In this post, I link to and excerpt from A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network [PubMed Abstract] [Full-Text HTML] [Full-Text PDF]. Orphanet J Rare Dis. 2017 Apr 17;12(1):71.
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Abstract
Background: Patients’ stories of their illnesses help bridge the divide between patients and providers, facilitating
more humane medical care. Illness narratives have been classified into three types: restitution (expectation of recovery),
chaos (suffering and loss), and quest (unexpected positive effect from illness). Undiagnosed patients have unique illness
experiences and obtaining their narratives would provide insights into the medical and emotional impact of living with
an undiagnosed illness. Adults and children with undiagnosed diseases apply to be evaluated by the Undiagnosed
Diseases Network (UDN). Written illness narratives from 40 UDN applicants, including 20 adult probands who applied for
themselves and 20 parents who applied for their children, were analyzed for: 1) narrative content and 2) narrative type.Results: Narrative content: could be grouped into three themes: 1) Expectations of the UDN: the majority felt they had
no further healthcare options and hoped the UDN would provide them with a diagnosis, with the adults expecting to
return to their previously healthy life and the parents wanting information to manage their child’s healthcare.
2) Personal medical information: the narratives reported worsening of symptoms and some offered opinions regarding
the cause of their illness. The proband narratives had few objective findings, while parental narratives had detailed
objective information. 3) Experiences related to living with their undiagnosed illness: frustration at being undiagnosed
was expressed. The adults felt they had to provide validation of their symptoms to providers, given the lack of objective
findings. The parents worried that something relevant to their child’s management was being overlooked.
Narrative type: All the narratives were of the chaos type, but for different reasons, with the probands describing loss and
suffering and the parents expressing fear for their child’s future. The parental narratives also had elements of restitution
and quest, with acceptance of “a new normal”, and an emphasis on the positive aspects of their child’s illness which
was absent from the probands.Conclusions: These narratives illustrate the chaos that coexists with being undiagnosed. The differences between the
proband and parental narratives suggest that these two groups have different needs that need to be considered during
their evaluation and management.Keywords: Undiagnosed, Patient narratives, Narrative typology, Undiagnosed diseases network
