LAUSR

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 …