Heard, but not seen.

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

2 thoughts on “Heard, but not seen.

  1. I really applaud you admitting to your neglect of your roommate’s situation. I think that, like you said, communication will make things more clear and less awkward for you guys in the future. I totally understand your situation and can tell you that it’s not always easy to discuss your disability with others – so you shouldn’t blame yourself. I remember my first couple of days at Temple, when the people I was with would go straight for the stairs, I would walk to the elevator, straying off from them. When they would jokingly call me lazy, I’d just laugh and let them know I had arthritis in both my knees. It was uncomfortable because I had literally just met them. Talk about awkward! But ever since I communicated that, I find them following me right to the elevator every time! It takes a little effort from both sides but I think it’s always healthy to give people the benefit of the doubt.

  2. Communication is pertinent to understanding how someone is feeling when their outside and physical appearances are indicative of anything. Knowing how your roommate feels will strengthen your relationship and make your interactions healthier especially when she is in terrible pain that does not present itself outwardly. I had a similar family situation with my sister, who uses a wheelchair. Because she cannot walk and is constantly using her wheelchair, it would have been impossible to tell that her hip was dislocated, it was only until she really began to feel the pain from it, about a month in to it being out of her socket, that she spoke out to the rest of our family. Had she not said anything, we would not have known, and her physical appearance was the same as always. Keeping the pain in, no matter how small, is sometimes detrimental. But as you’ve said, your roommate shouldn’t have to explain herself, neither should my sister, but if the lack of communication is making the situation worse then there would appear to be no other course.

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