If I were asked to describe a typical appearance of an individual with a disability, my mind would immediately go to the aesthetics. In other words, I’d picture wheelchairs, walkers, corrective footwear, and other various devices so commonly linked to the disabled. But disability reaches far beyond the narrow scope of visual representation. Oftentimes, for myself, as well as for other able-bodied individuals, disability that can’t easily be seen is tremendously difficult to understand.
Three years ago, both my grandma and roommate were diagnosed with Systemic Lupus Erythematosus (SLE). For those who are unfamiliar with the condition, lupus basically causes one’s body to attack itself. Flares and remissions are sporadic. On a given day, my roommate may feel free of pain and symptoms. Throughout this same day, however, my grandma might be confined to her bed and unable to keep any food down. If and/or when either will have a flare cannot be predicted.
Because this disease primarily disables the functions one’s internal organs and tissues, the effects of lupus are not as visibly detectable as are those of Down syndrome or cerebral palsy. Thus, my roommate and I have found that communication is a crucial component of our friendship. We attended the same high school in a particularly rural area. Upon moving to Philadelphia, we both wanted nothing more than to explore every single Philly nook and cranny. I, selfishly neglecting the unpredictable nature of lupus and its not-so-visual, detrimental effects, assumed she was well and tried to keep the two of us going at all times. Fortunately, though, she forgave me for my naivety. We now discuss her feelings and pain levels each day and plan accordingly.
My roommate shouldn’t have to explain herself. However, I am so appreciative of the fact that she lets me know when she is or isn’t physically feeling adventurous. Lupus is insanely hard to manage. As an outsider, I can’t see my grandma’s healthy tissue being destroyed or my roommate’s inflamed joints. But both have helped me realize that every aspect of one’s condition doesn’t have to be easily identifiable. We’re all so in need of visual evidence. We must learn to have more faith in what we simply cannot see.
Want to know the scientific definition of lupus? Check out the following site: http://www.lupus.org/answers/entry/what-is-lupus