My name is Sarah and my journey is 25 years in the making.
I am a recent graduate with a MA in Sociology specializing in Families, Health and Well-being and a long time patient of the Canadian health care system. I started this project in late 2012, shortly after relocating to Toronto, Ontario with my sister and our three cats Isabelle, Teddy and Oliver. Initially, writing was a means to continue my journey of self discovery post-institution and sharpen my skills of analysis and introspection, while searching for a “real life career”. I deeply miss the engaging discussions, problem solving and critical thinking that I experienced with my professors and peers during grad school and this project has helped me retain some of that. Over the last seven years I have volunteered with numerous health care and health related organizations – trying to gain experiences, knowledge and understanding from others. I love animals, nature and travelling, the latter of which I hope to do more of in the future. My kitten Isabelle sitting on my laptop
I was diagnosed with Marfan syndrome, a genetic connective tissue disorder, when I was two and a half years old. Living with this chronic illness has meant that I am a life long patient (with three major surgeries under my belt) and an interesting specimen to GPs and Specialists alike. I am also defined as legally blind, a characteristic that can sometimes accompany a Marfan syndrome diagnosis. My disabilities are what are often referred to as invisible, or they can be and often are concealed. This leads to the tricky question of when, if and how I should disclose each of the subtleties of my, for the lack of a better word, illness. Many of my closest friends, acquaintances and superiors have no idea, and for a long time I have been very keen on hiding my illness and vision in an attempt to attain a ‘normal life’.
My journey growing up with Marfan syndrome and extreme near sightedness has very much contributed to my academic studies and has guided me towards the research and career focus I am working towards today. Throughout my four years of an undergraduate in Honours Sociology, I became fascinated by courses in Sociology of Health and Illness, Sociology of Medicine, Biomedical Ethics and Critical Disability Studies. I found that I could analyse and express my experience with Marfan syndrome through social research practices and by doing so, come closer to understanding what Marfan syndrome has meant for my self and my life. I also found that I was not alone in wanting to contextualize my experience within my work and have been guided down this path by some incredible mentors and scholars that have blazed this trail before me.
My desire is to promote and celebrate the integration of lived experience within health knowledge and research. Not only does this fusion humanize research itself, but I would argue that it is very valuable for translating to wider realms of policy and practice. Further, I would love to support and empower others in the way that I have been so fortunate to have encountered. For this, I must be brave enough to tell my story. A picture of me smiling beside my graduate student mailbox
My graduate student mailbox! “I made it to the big leagues”
When I was young I was not afraid to be honest, but as many people experience, the teen years can be rough and I dealt with this the only way I knew how – concealing my differences. When you do something for so long you tend to get very good at it and the habit is hard to break. At the beginning of my Masters program I knew I had to make a difficult choice. If I chose to write my thesis on Marfan syndrome, then it would mean being open and reflective on my experience with it. Above all else, it would require talking about my diagnosis and my perceived vulnerabilities with others. I also knew that this was a challenge and an opportunity that I could not shy away from. I will never forget the day my supervisor encouraged me to present my “topic” to my six peers, and friends. I was so afraid I thought I was going to start crying at many points throughout the short presentation. The support and motivation I received from my mentors, MA ladies and loved ones during my MA was amazing and I am extremely thankful. It was exhausting, it was scary, but I have never been so proud of myself and of my work.
- Why was (and still is) it so difficult for me to reveal my diagnosis to others?
- What do these feelings imply about chronic illness and disability?
- How can lived experience be used as a tool within health research, policy and communication?
These are the kinds of personal and social questions I intend to explore throughout this project. As I am embarking on this new journey of attaining meaningful employment and publishing, I am also learning how to translate my personal experience and research into practice. The Master Patient has given me a platform in which to do so and I invite you to collaborate with me on this journey.
The Master Patient is published by Sarah E. McMillan MA, a qualitative health researcher, sociologist, epatient, writer, professional volunteer, animal lover.