近年来，随着互联网技术的持续进步以及医疗改革的深入实施，各种线上医疗平台蓬勃发展，传统的医疗服务模式正经历着显著的变革。当前，许多研究已经认识到互联网医疗平台在慢性疾病和癌症等严重疾病治疗中的积极作用。然而，这些研究大多还是集中于互联网医疗平台在疾病治疗中的“客观功能”，而往往忽视了患者自身的“能动性”。基于此，本研究提出以下问题：重症慢性病患者如何看待和使用互联网医疗平台？通过利用这些平台对他们的病患和生活体验产生了什么样的影响？

通过在互联网医疗平台的参与观察和对18名尿毒症患者的深度访谈，本研究从“病人生活”和“社会生活”两方面展开阐述。整体而言，患者面对生活的态度是“与疾病共存”“带病生活”。而平台作为中介，在某种程度上缓和了“个人”与“社会”之间的张力。具体来说，在“病人生活”中，患者面对的是匮乏的医护资源和复杂医患沟通等核心问题。通过在平台上学习健康知识、理解患病原因，并最终参与治疗决策，病患打破了医患之间的权力壁垒，自行调整医嘱、自主选择医生，并且引入“外行专家”的参与，这在一定程度上挑战了传统的医患权力结构。在“社会生活”中，患者往往身处无法感同身受的家人、自身难以履行的社会角色和断裂的社会联结等困境。患者利用平台建立了新的社会关系，尤其是病友之间的互助纽带。这一纽带为患者提供了病友之间的资源交换、阶段性情感支持与陪伴，甚至帮助患者实现了自我价值。与此同时，部分患者也通过向平台投稿的方式获得经济报酬，一定程度上补充了生活来源。

这些研究发现一方面揭示了互联网医疗平台对患者建构日常生活的作用与影响，另一方面也对医学社会学和人类学的疾痛体验研究补充了丰富的经验案例分析，进而推进了医学社会学对于“慢性病患者”如何“带病生活”的思考。

In recent years, with the continuous advancement of Internet technology and the deepening implementation of medical reform, various online medical platforms have flourished, and the traditional medical service model is undergoing significant changes. Currently, many studies have recognized the positive role of Internet medical platforms in the treatment of serious diseases such as chronic illnesses and cancer. However, most of these studies still focus on the "objective functions" of Internet medical platforms in disease treatment, often neglecting the patients' own "agency". Based on this, this study raises the following questions: How do patients with severe chronic diseases view and use Internet medical platforms? What impact has this had on their experiences of illness and life?

Through in-depth interviews with 18 research subjects, this study describes from two aspects: "patient life" and "social life". Overall, the attitude of patients towards life is to "coexist with the disease" and "live with the illness", requiring the platform as a medium to alleviate the tension between the "individual" and "society". Specifically, in "patient life", patients face a shortage of medical resources and complex doctor-patient communication, so they need to learn about health knowledge, understand the causes of illness, and ultimately participate in treatment decisions on the platform. This process breaks down the power barriers between doctors and patients, which is manifested in patients adjusting medical orders on their own, autonomously choosing doctors, and the participation of "lay experts", which to some extent challenges the traditional doctor-patient power structure. In "social life", patients face family members who cannot empathize, social roles that they find difficult to fulfill, and broken social connections. Patients therefore use the platform to establish new social relationships, and this bond provides patients with resource exchange between fellow patients, emotional support and companionship at different stages, and sometimes also helps patients to realize their self-worth. At the same time, some patients also receive economic compensation by contributing to the platform, which to some extent supplements their source of income.

By examining the reconstruction of life with Internet medical platforms and patients with chronic diseases, this study provides assistance to the relevant research on "coexists with the disease" in the field of medical sociology. On the one hand, it supplements the type of patient role that actively adapts and "living with illness", and on the other hand, it supplements the impact of Internet medical platforms on patients' experiences of illness and pain.