Chronic Illness — Is Knowledge Enough?

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 they affect. 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 many have not lived with gastroparesis nor felt its effects in their own lives. Those who are unaffected cannot fully appreciate the agony, the mental and physical torment of this punishing disease that I experience. Many have not met the struggle 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. They have not faced the fear of perhaps never again being able to delight in these tantalizing treats, nor have they desperately clung to the slowly fading memory of what it was once like to partake of them.

A large portion of the population has not experienced the overwhelming nausea which comes out of the blue and which, at times, tethers you to the couch – or the bathroom floor. Nor have they ever 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. It haunts you as you lie in bed contemplating how you might face it again tomorrow. They have not watched their bodies wither away, felt the energy drain from them with the slightest exertion, nor endured the bone-deep fatigue and weakness which weigh on both body and soul.

They may have knowledge of the available treatment options associated with my condition and be able to recommend the top physicians in the field, but they cannot comprehend the depths of the disillusionment and rejection which accompany failed medications and contemptuous, cold-hearted physicians. They have not felt the condescending glare of the doctor who has accused them of imagining or inventing their symptoms in hopes of gaining sympathy, attention, or mind-altering medications, who has blamed them for the very existence of their illness, or who has admonished them for not trying hard enough to overcome its effects. They have not spent their life savings, travelled cross-country, and held out hope that a certain new doctor will take their case and finally “see” their agony and alleviate their misery, only to experience the utter devastation of having their hopes dashed when this “tops in the field” doctor turns them away with a simple, “I’m sorry, but your case is too complex.” They have not anticipated healing and relief only to discover their “miracle” medicine comes with serious risks and harmful side effects or that, in reality, it simply has no effect on their symptoms at all.

Some may “know” what is best, endlessly reprimand me for my lack of “positivity,” and direct me to “fight through the pain,” but they are not the ones who must look my child in the eyes and tell her yet again, I will miss her latest performance, school activity, or birthday party. They are not forced to deny their spouses a celebratory evening on the town or miss the family Christmas gathering because their bodies refuses to cooperate with the demands of such an outing. Many do not bear the burden of being unable to work or provide financially for their families, help with basic household chores and errands, or contribute in any productive way. Countless people do not ceaselessly relive the memories of earlier times when such tasks were easily performed and such activities were readily attended, nor do they live with the reminding surroundings of all they have lost and all they can no longer accomplish. They do not experience the guilt of constantly disappointing others.

No, they may know of my illness, but they may also lack understanding on a meaningful level.

Nevertheless, they need not wholly comprehend the full effects of my illness to offer kindness and co-exist with me in peace and harmony.  I will settle for knowledge alone, if that knowledge is unaccompanied by judgment and reproach. It is not necessary for people to intimately understand my deepest longings, aches, and needs, nor my fears and regrets, so long as they will simply offer support in the ways I desire and not in the ways they deem best. Others must merely recognize I am truly ill and doing the best I can to survive, to thrive, despite this difficult disease. People 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, and cannot, comprehend.

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