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This chapter explores time in the context of chronic Intracranial Hypertension (IH), an uncommon chronic illness–disability. I argue that developing research methods informed by an understanding of crip-chronic time (Kafer, Feminist, queer, crip. Indiana University Press. http://www.jstor.org/stable/j.ctt16gz79x , 2013; Sheppard, Performing normal but becoming crip: Living with chronic pain. Scandinavian Journal of Disability Research, 22(1), 39–47. https://doi.org/10.16993/sjdr.619 , 2020) allowed us to facilitate meaningful research that focuses on and promotes embodied knowledge and expertise, opening space for participants’ voices, which has been rare in previous research on IH. For people living with IH (pwIH), time is driven by two competing temporalities: a medicalised, curative framework and ambient uncertainty. Consequently, participants expressed a deep ambivalence in their past, present, and future narratives. The narrowed positive expressions relating to matters of time in IH reflect the ‘complexities of crip lives’ (Sheppard, 2020) and may indicate a considerable lack of quality of life for this cohort. I posit that the future imaginaries of pwIH can be reframed by embracing crip negativity. These findings also offer some insights for other chronic illnesses.

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“My Health Sucked the Future Right Out of Me”: Time and Temporality in Life with Intracranial Hypertension

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  • 发表日期：

    2025年

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  • Kelly Moes

摘要

This chapter explores time in the context of chronic Intracranial Hypertension (IH), an uncommon chronic illness–disability. I argue that developing research methods informed by an understanding of crip-chronic time (Kafer, Feminist, queer, crip. Indiana University Press. http://www.jstor.org/stable/j.ctt16gz79x , 2013; Sheppard, Performing normal but becoming crip: Living with chronic pain. Scandinavian Journal of Disability Research, 22(1), 39–47. https://doi.org/10.16993/sjdr.619 , 2020) allowed us to facilitate meaningful research that focuses on and promotes embodied knowledge and expertise, opening space for participants’ voices, which has been rare in previous research on IH. For people living with IH (pwIH), time is driven by two competing temporalities: a medicalised, curative framework and ambient uncertainty. Consequently, participants expressed a deep ambivalence in their past, present, and future narratives. The narrowed positive expressions relating to matters of time in IH reflect the ‘complexities of crip lives’ (Sheppard, 2020) and may indicate a considerable lack of quality of life for this cohort. I posit that the future imaginaries of pwIH can be reframed by embracing crip negativity. These findings also offer some insights for other chronic illnesses.