In this photovoice study, we explored how people with multiple sclerosis (MS) experience living with and managing invisible symptoms in daily life. Twelve people with MS produced digital images over a 2-week period to capture their experiences of invisible symptoms. Participants then discussed their images in semistructured interviews. We thematically analyzed the interviews and developed three main themes that encompass the difficulties around conceptualizing invisible symptoms and the conflicts of legitimacy this presents for people with MS, in which the reality of their invisible symptoms is invalidated by others and sometimes for themselves. Participants navigated these issues in dynamic ways, choosing to fit their symptoms to their lives or make space for their symptoms depending on the context, often influenced by a desire to “stay invisible” or to “be seen.” We highlight clinical implications for supporting people with MS around the legitimacy conflicts they experience and how they negotiate living with invisible symptoms.

中文翻译：

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看到看不见的东西：对多发性硬化症的隐形症状的生活和管理的光声探索

在这项光声研究中，我们探讨了多发性硬化症 (MS) 患者在日常生活中如何体验和管理隐形症状。12 名多发性硬化症患者在两周内制作了数字图像，以捕捉他们对隐形症状的体验。然后参与者在半结构化访谈中讨论了他们的图像。我们对访谈进行了专题分析，并提出了三个主题，其中包括概念化隐形症状的困难以及这给多发性硬化症患者带来的合法性冲突，其中他们的隐形症状的现实被他人，有时甚至是他们自己所否定。参与者以动态的方式处理这些问题，选择使他们的症状适应他们的生活，或者根据环境为他们的症状腾出空间，通常受到“保持隐形”或“被看到”的愿望的影响。我们强调了支持多发性硬化症患者经历的合法性冲突以及他们如何与隐形症状相处的临床意义。