October 1, 2009
I stumble upon the website during an idle Google search. It is devoted to the day-to-day struggles of folks with chronic illness. The title, “But You Look So Good,” is sarcastically scrawled in a messy hand across the top of the page. I smile. For many of us, that tongue-in-cheek sentiment is all too familiar, the meaning clear: really, you cannot look that good and be so sick.
A young woman I know encounters this attitude all the time. “My illness is hidden,” says Sarah Levin Weiss, who has Crohn’s disease that almost killed her more than once. “I take Prednisone [a powerful, oral steroid] every day, so I have rosy cheeks. I look pretty healthy.”
Sarah has grown weary of people—some strangers, generally well intentioned—telling her how good she looks. That same thing often happens to me. “What did you expect?” I sometimes respond if I know the person. “A cadaver?”
A tension can exist between how we feel and how sick we appear in the eyes of others. When people want to believe we are healthy, then logically—sort of—that becomes how we think we should feel. “That constant tension is emotionally draining,” Sarah says. “We are forced to live a lie to make others feel better.”
The most insincere question in the language, of course, is the simple query, “How are you?”
With me, the word “fine” frequently explodes before I even hear the question mark. Who wants to be bothered? Illness may be a part of life, but as with death, we too often fail to make our peace. One reason a chronic condition may become intensely private is that we realize others do not really want to hear the truth.
“It is emotionally easier for someone to look at you as healthy and holding your own,” Sarah says. Her appearance, no matter how misleading, extends permission not to view her as a sick person. She must be doing well, casual friends and neighbors are relieved to assume.
“Is that okay with you?” I ask.
Sarah laughs. “Sometimes it makes me feel as if I have to prove that I am not feeling well, that things are not good.”
“Why do you care what people think?” I say. “These are your battles, not theirs.”
She pauses and giggles. “Sometimes I care for no particular reason. Sometimes I figure the hell with it, and keep my mouth shut.”
I can understand why she does that. So many in this land share a value system that places a premium on physical perfection and beauty. We look away from the crutches, canes, and wheelchairs. We do not want to see that kind of imperfection. But the reality is that chronic illness is everywhere: heart disease, pulmonary problems, neurodegenerative illnesses, certain cancers, diabetes, various forms of arthritis, and many, many other conditions that are on the rise. Current figures say more than 137 million Americans battle a chronic illness or two.
Still we remain a hidden population. We cannot see each other and do not recognize ourselves. Chronic illness is in our national photograph, yet we want to focus only on the family farmer, the train steaming across the heartland, the baseball slugger bringing thousands to their feet in that snapshot.
Look there, up in the corner! See the figure in the hospital bed? That person is a part of the American portrait too. He is now a patient and does not know what is wrong with him—and he is scared.