The lived experience of Huntington’s disease: A phenomenological perspective on genes, the body and the lived experience of a genetic disease

The purpose of this article is to explore the intersections between genes, the body and the lived experience of a genetic disease. This article is based on empirical material from a study on how individuals affected by Huntington’s disease experience their everyday life. This study identified two themes that represent and capture the experience of the affected individuals. The themes are (1) noticing symptoms in everyday life and (2) neither health nor disease. The analysis of the empirical material was performed by employing a theoretical framework based on phenomenology. The findings of this study showed that the lived experiences among individuals affected by Huntington’s disease were both fluid and dynamic in their nature. Furthermore, the analysis of the empirical material suggests that this fluid and dynamic character can be linked to a dimension that revolves around the intersections between genetics and the body. Following phenomenologist Drew Leder’s outline of the divergence between the invisible and the visible features of the body, the analysis of the empirical material suggests that the mutated gene that causes Huntington’s disease can be seen as a phenomenological nullpoint. It is important that the healthcare system acknowledges and addresses the lived experiences that are discussed in this article, particularly, as the use of genetics and genetic testing becomes more widespread usage within medicine