PDF(Pubmed)
Abstract：
This article offers the case of cystic fibrosis (CF), a multi-system disease, to illustrate how individuals with chronic illness cultivate and apply embodied knowledge to optimize their well-being. We identified three interrelated processes that occur when disease chronicity and menstrual cyclicity meet: 1) knowledge production with a period-tracking app; 2) application of embodied knowledge to manage life with menstrual-related CF symptoms; 3) cultivation of the body-self as a menstruating woman with CF. These dynamic processes capture how cis-gender women with CF attune to their bodies, navigate their illness, and situate themselves within their lifeworlds. Genetic conditions like CF are apt for studying these processes because adults have managed their disease for decades, with longitudinal experience that often exceeds that of their clinicians. Our evidence elucidates the co-constitutive nature of chronic disease, gendered subjectivity, and biological processes in flux. We explored the menstrual cyclicity of chronic disease symptoms by having 72 participants track their CF symptoms across 4 menstrual cycles on a customized period-tracking app. We performed semi-structured interviews with 20 participants to understand how they interpreted these cyclical CF symptoms. We learned that digital tracking attuned participants to monthly fluctuations in CF symptoms. They applied this knowledge to manage their lives and shape their sense of self. We argue that women with CF produce distinct embodied knowledge during their reproductive years, shaping their illness experience, disease management, overall health, quality of life, and selfhood. The dynamics we describe may reflect broader patterns by which women with other chronic illnesses experience their bodies and understand themselves in the world.
摘要：
这篇文章提供了囊性纤维化(CF)的案例，多系统的疾病,以说明患有慢性病的个人如何培养和应用体现的知识来优化他们的福祉。我们确定了当疾病慢性性和月经周期性相遇时发生的三个相互关联的过程：1）使用周期跟踪应用程序进行知识生产；2）应用体现的知识来管理与月经相关的CF症状的生活；3）作为患有CF的经期妇女的身体自我培养。这些动态过程捕捉了具有CF的顺式性别女性如何适应她们的身体，驾驭他们的疾病，并将自己置于他们的生活世界中。像CF这样的遗传条件很容易研究这些过程，因为成年人已经控制了他们的疾病几十年，纵向经验往往超过他们的临床医生。我们的证据阐明了慢性病的共同组成性质，性别主观性，和生物过程中的通量。我们通过让72名参与者在定制的周期跟踪应用程序上跟踪他们在4个月经周期中的CF症状，探索了慢性疾病症状的月经周期。我们对20名参与者进行了半结构化访谈，以了解他们如何解释这些周期性CF症状。我们了解到，数字跟踪使参与者适应每月CF症状的波动。他们运用这些知识来管理自己的生活并塑造自己的自我意识。我们认为，患有CF的女性在生育期间会产生不同的具体知识，塑造他们的疾病经历，疾病管理,整体健康,生活质量,和自我。我们描述的动态可能反映了更广泛的模式，通过这些模式，患有其他慢性疾病的女性在世界上体验自己的身体并了解自己。
