I live with a chronic, incurable disease called rheumatoid arthritis (RA). According to my healthcare system, this makes me a patient. But I can tell you I consider myself a lot of other things before I introduce myself to anyone as a patient or as a person who lives with RA. In fact those words (patient, person living with RA) are the ones I choose only when I’m in the healthcare system or when I’m part of some type of project that includes a patient perspective. Those words make me feel less empowered, less influential and less skilled than the others at the table in those situations. I am quite certain that when I’m in professional situations where I offer myself up as a patient, I am looked at ‘differently’—and not in a ‘good way’ of differently. I contend that most patients don’t identify themselves as a patient first and foremost–this is a label imposed on us by our healthcare systems. Sarah Riggare is a person who lives with Parkinson’s disease and who uses a stunning visual and explanation to convey how little time she spends with her neurologist annually: ‘I visit my neurologist twice a year, for about 30 min. That is one hour per year. The rest of the year’s 8765 hours, I spend in self-care’.1 This is similar to the time I spend annually with my …

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作为人的病人：更新

我患有一种称为类风湿性关节炎 (RA) 的慢性、无法治愈的疾病。根据我的医疗保健系统，这使我成为一名患者。但我可以告诉你，在我向任何人介绍自己作为患者或与 RA 一起生活的人之前，我认为自己还有很多其他事情。事实上，这些词（患者、RA 患者）是我只有在医疗保健系统中或参与某种包含患者视角的项目时才会选择的词。在这些情况下，这些话让我觉得自己比桌上的其他人更没有权力、影响力和技能。我很确定，当我在专业场合中以患者的身份提供自己时，人们对我的看法是“不同的”——而不是“好方式”的不同。我认为大多数患者首先并没有将自己标识为患者——这是我们的医疗保健系统强加给我们的标签。Sarah Riggare 是一位患有帕金森病的人，她用惊人的视觉和解释来表达她每年与神经科医生相处的时间是多么少：“我每年去看我的神经科医生两次，每次大约 30 分钟。那是一年一小时。一年剩下的 8765 小时，我花在自我照顾上。1 这与我每年花在……的时间相似。