Dear Reader, Thank you for stopping by. Please allow me to introduce myself.
I am a social scientist by training and I currently work in health research. However, I am also a patient living with a rare genetic connective tissue disorder.
I created The Master Patient shortly after graduating with my Masters in Sociology. I was frustrated with attempting to tightly contain my ‘patienthood’ and ‘disabled self’ – facets of my personhood that, I feel, largely contribute to who I am, but also facets that I am not always comfortable with sharing. During my university career I was encouraged to embrace the spilling over of these identities into my academic studies, an endeavor that was both exceptionally rewarding and exhausting. Over time I began to learn (and struggle) with how I might give voice to my biographical experiences of illness using scholarly and narrative techniques. The art of writing is where I feel most comfortable as I have always turned to writing as a means of self expression.
As I took up more pronounced patient advocacy roles and working within health and education research I began to learn that drawing from both my formalized research skills and my experiential patient insights would not, in any way, be a straightforward task. I have to admit that I was blithely naive to the many challenges and paradoxes – emotional, moral, technical, and structural, to name a few – that I would encounter while trying to speak from these two forms of knowledge. Throughout it all I continue to feel a responsibility and a desire to share my experiences in hopes of connecting with others and creating dialogue around the way we think and talk about health, illness, medicine and disability.
My hope for The Master Patient is that it becomes a space to share the lessons I have learned while continuing to explore: what it means to be both a social scientist/researcher and a patient; when and where I can (and cannot) bring forward knowledge from each of these roles; and how I can do this in a skillful, thoughtful and impactful way. You’ll also find many posts on the topics of accessibility, living with a chronic illness, working within research and academia, navigating the Canadian health system and more.
I would love for you to share your insights and join me in this process of discovery.