Until I became a Contributing Editor for Suite101.com, my sarcoidosis was mostly a private matter, known only to family and close friends. Unlike Karen Duffy, who writes in her delightful book, Model Patient, about how she immediately made friends with her sarcoidosis upon diagnosis, I have always considered it my personal burden. Because of its chameleon-like, mutable behavior, and general absence of physical signs, it has not been necessary for me to identify myself as one with a chronic disease. For the most part, my illness is invisible.
For most of my life, I avoided asking for special favors, but am an avid advocate for those who need them. A good friend, who has asthma, uses her Handicap sign whenever we travel by car. I have observed her plan and coordinate her activities to minimize excess time, effort, and distance. My advocacy has also gone as far as arguing the case for the importance of leaving Handicap Parking spaces open. In other instances, I have found myself educating others about "invisible illness" when their comments clearly indicated that they questioned the legitimacy of persons using those handicapped parking spaces who looked completely healthy.
It hadn't occurred to me that I might one day be one of those who "look good" while "feeling bad." I have noted the surprise from family when they observe that my shopping has become functional, rather than the long hours of recreation that gave me great pleasure and left them fatigued, in the past. Making private accommodations that allow me to avoid excessive stress to my body or demands on my energy does not expose me to the public scrutiny that I imagined would be so uncomfortable had I sought assistance with managing heavy luggage on different stops on my journey.
Upon reflecting on the train ride, I realized that I have equated asking for special favors with being set apart from the masses, being different. While I enjoy expressing myself in a style that is uniquely my own, it is out of choice that I do it, not necessity. It was the need for special favors that challenged the definition of who I am.
