How Marfan Syndrome Has Led Me To Study Sociology...Hello!
My name is Sarah and I am a 24-year-old woman who was diagnosed with Marfan syndrome when I was very young. I am also a first year Master of Sociology student focusing on Health and Illness at Wilfrid Laurier University. As I will explain, these are no coincidence. As a young girl growing up with Marfans, I did not realize the extent of my disorder (apart from the many doctor visits) until I had my first heart surgery when I was 10 years old. This was followed by a second heart surgery at the age of 12 and a spinal fusion when I was 17 years old. I was lucky enough to have a mother who took on the responsibility of managing my care, which allowed me to be a happy go lucky child. As I have grown older I have gone through the process of transitioning to self-care, and as a teenager and young adult this was accompanied with attempting to understand how living with Marfans fits into my identity.
My journey growing up with Marfan syndrome has very much contributed to my studies and has guided me towards the research I am working on today. Throughout my four years of an undergraduate in Honours Sociology, I was fascinated by courses in Sociology of Health and Illness, Sociology of Medicine, Biomedical Ethics and Disability Studies. I found that I could analyze and express my experience with Marfan syndrome through Sociology and by doing so, come to understand what Marfan syndrome meant for my self and my life. I also found that I was not alone in wanting to write about my experience. My work fits into the broader literature on chronic illness, identity, uncertainty and risk found within the Sociology of Health and Illness. I am able to connect theories about uncertainty in chronic illness with my experience of worrying that my Marfan body is a ticking time bomb waiting for something to go wrong. I am also hopeful to create a space where the experience of living with Marfan syndrome can be expressed and understood within social research on Marfan syndrome. My studies are not only educational, but a process of self-discovery. It is what has allowed me to begin to unravel the complexity of a life with Marfan syndrome and what this means for myself and others.
This is my story.