Having lived with SLE for 45 years, lupus is a huge part of me; but I have made a conscious effort to not let it define who I am. Diagnosed in 1973 in my early teens, a life with lupus is really all I know. Certainly, it affected my plans as to where I went to high school, completed my university education, my career choices, as well as decisions about married life and family. Yet, through a life with lupus and the various other medical issues and associated conditions, I have done my best not to let SLE define who I am as a person; rather, it is a challenge that I need to work around.
I have been blessed insofar that although I have had bouts with the lupus that have put me on the “disabled list” for a short period of time, I have been able to work full time throughout my life. Fortunately, after a career as a secondary school teacher was thwarted by a lupus flare, I stumbled upon a career in health information management (HIM), which allowed me to work in an environment that met my physical needs, but also challenged me intellectually by working in health care.
As Canadians, we are fortunate to live in an age and country where “school” is not necessarily defined by “bricks and mortar”. As such, I was able to complete my education with college-level certificates through to doctoral studies via distance-learning formats—both through the postal service in the early days and later by way of Internet technology. Taking advantage of these options as an individual with chronic illness allowed me to do much of my study from the comfort of my home (usually in my “jammies”!). As a result, I have been able to enjoy a full career in health care and finally get back to my first love of teaching.
Of course, I did not (and could not) do this on my own. My wife and family have been of immense support to me in my endeavours. With me, a life with chronic illness is all they have really ever known. But, the importance of a supportive family (and in my case church community) have been foundational to my life with lupus. Of course, there is also my amazing rheumatologist (of 30 years!) and his support staff.
As I begin my tenure as a Board member for Lupus Canada, my encouragement to others living with lupus is that it is not a disease that defines who we are! Yes, it is a significant portion of and consideration in our lives. But, hopefully with the support of our families, physicians, and communities we can rise above the challenges and demonstrate to others “we shall overcome”.