In what seemed like validation for my plight, a supervisor began his comments by informing me he “knew a lot about my illness, for he and his wife had a close friend with it.” The remaining comments became a kick in the stomach when he continued, “so you can go ahead and quit. I have found two students to take your place for the summer.”
Recently, we had our patio resurfaced. The contractor mentioned to my husband that his wife was on disability. When my husband responded that he understood because I was too, the contractor was quick to say, “Yeah, but your wife looks in much better shape than mine.” My husband eloquently replied, “Looks can be deceiving.”
When I was frustrated and disappointed by the prospect of potential rain at the (now postponed) baseball game a couple of weeks ago, I vented on Facebook only to have a relative, who also has a chronic illness, reply, “Don’t let your illness rule your life.” Not only was I stunned, but I also had expected this relative, of all people, to understand. Sadly, I was mistaken.
I know that those without certain chronic and debilitating illnesses cannot fully grasp what it entails, but I still am amazed at the level of difficulty people have in understanding. Granted, we also have difficulty grasping the culmination of symptoms and how our level of functioning can vary day-to-day (even hour-by-hour), but it still can be emotionally upsetting to encounter those who seem unwilling to listen and learn. No, I cannot fully grasp some of the daily trials and tribulations that, for example, a cancer survivor encounters, but I am not going to downplay or ridicule another.
As a child, I recall visiting elderly relatives in nursing homes and hospitals. Nursing was the second most prominent profession among many of my mother’s relatives; I even recall as a young teen sitting in our hallway reading (with much enthusiasm) our medical encyclopedias.
Most important to me was that my mother and grandmother explained the impact the illness had on the person, focusing on the person first and foremost. To encounter those who are emotionless to others makes me dumbfounded. Yes, I suppose I am quick to judge them, as they judge others. I realize not everyone reacts the same way to illnesses; some may even respond out of fear and naïveté.
Probably the hardest factor for many of us is when we find those closest to us making curt or thoughtless remarks. Suddenly we have to defend ourselves. This is hard to contend with, especially if we are still struggling with inner conflicts over our health situation. Why is it that many believe that self-control or a hardened will can miraculously cure us? Why is this particular illness viewed by some as self-determined?
When a person lacks empathy and makes insensitive remarks, it make me wish they could live my life for just one day. They would kiss the ground and be thankful to return to their own body afterward. I have no choice.