Abstract
There are few non-medical reflections on haemophilia and chronic bleeding disorders (CBDs), and what there is often turn out to be wrong, outdated, or fanciful. CBDs are often hidden experiences, aside from the lack of treatment in literature, academic or not. This article re-frames CBDs through a philosophical, yet subjective, treatment that seeks to describe it as a cluster of experiences that often step outside of the bounds of the medical definition. Why have CBDs been so elusive? Partly because of their multi-layered, temporally structured, socially organized ontology, which makes them hard to define, locate, and reduce to one clear-cut perspective. Are they in the genes, in actual bleedings, in secondary disabilities, in the social adjustments involved, in iatrogenic complications; or are they to be located in the joints, the liver, or other organs that may be affected as a consequence of treatments? Do they affect individuals, families, genetic carriers, sexual partners, or even future generations? Drawing partly upon personal history, conversations, semi-structured interviews, published biographical narrations, and the shared experience of patients’ groups, the article amends some misinterpretations and captures salient aspects of this illness experience.
Published Version
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