Knowledge is not the same as understanding. Knowledge is a mere accumulation of facts and data, while understanding requires a bit more. It demands insight, sensitivity, and intimacy with any given situation – and, sometimes, it necessitates you have borne a particular burden. I am convinced there is a basic lack of understanding regarding the effects chronic illnesses have on the lives of those afflicted. But though I recognize this deficiency, I do not believe it must necessarily lead to discord and strife. Please allow me to explain.
You may have knowledge of my illness; perhaps you can even define it, explain it, and list its symptoms. But you have not lived with Gastroparesis nor felt its effects on your own life. As one who is unafflicted, you cannot fully appreciate the agony, the mental and physical torment of this punishing disease. You have not met the horror of being surrounded by a virtual cornucopia of foods, of savoring their tempting aromas, of longing to take just a bite, and of ultimately having to reject them. You have not faced the fear of perhaps never again being able to delight in these tantalizing treats, nor have you desperately clung to the slowly fading memory of what it was once like to partake of them. You have not experienced the overwhelming nausea which comes out of the blue and which, at times, tethers you to your couch – or the bathroom floor. You have not endured the never-ending daily pain which cannot be tamed and which drives you to tears, confines you to your home, chains you to your heating pad, prevents you from sleeping, and haunts you as you lie in bed contemplating how you might face it again tomorrow. You have not watched your body wither away, felt the energy drain from you with the slightest exertion, nor endured the bone-deep fatigue and weakness which weigh on both body and soul.
You may have knowledge of the available treatment options associated with my condition and be able to recommend the top physicians in the field, but you cannot comprehend the depths of the disillusionment and rejection which accompany failed medications and contemptuous, cold-hearted physicians. You have not felt the condescending glare of the doctor who has accused you of imagining or inventing your symptoms in hopes of gaining sympathy, attention, or mind-altering medications, who has blamed you for the very existence of your illness, or who has admonished you for not trying hard enough to overcome its effects. You have not spent your life savings, travelled cross-country, and held out hope that a certain new doctor will take your case and finally “see” your agony and alleviate your misery, only to experience the utter devastation of having your hopes dashed when this “tops in the field” doctor turns you away with a simple, “I’m sorry, but your case is too complex.” You have not anticipated healing and relief only to discover your “miracle” medicine comes with serious risks and harmful side effects or that, in reality, it simply has no effect on your symptoms at all.
You may “know” what is best, endlessly reprimand me for my lack of “positivity,” and direct me to “fight through the pain,” but you are not the one who must look your child in the eyes and tell her yet again you will miss her latest performance, school activity, or birthday party. You are not forced to deny your spouse a celebratory evening on the town or miss the family Christmas gathering because your body refuses to cooperate with the demands of such an outing. You do not bear the burden of being unable to work or provide financially for your family, help with basic household chores and errands, or contribute in any productive way. You do not ceaselessly relive the memories of earlier times when such tasks were easily performed and such activities were readily attended, nor do you live with the anguish surrounding all you have lost and all you can no longer accomplish. You do not suffer the guilt of constantly disappointing others.
No, you may know of my illness, but you lack understanding on any meaningful level.
Nevertheless, you need not wholly comprehend the full effects of my illness to offer your kindness and co-exist with me in peace and harmony. I will settle for your knowledge alone if that knowledge is unaccompanied by judgment and reproach. It is not necessary for you to intimately understand my deepest longings, aches, and needs, my fears and regrets, so long as you will simply offer support in the ways I desire and not in the ways you deem best. You must merely recognize I am truly ill and doing the best I can to survive, to thrive, despite this cruel disease. You need only sit by my side, present a listening ear, believe my struggles are genuine, offer comfort, respect my choices, acknowledge my efforts, forgive me my failings, and refrain from criticizing that which you do not – cannot – comprehend.
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