September 2, 2010
We people with chronic illnesses are not normal by any standard measure, often even to ourselves. So many of us live in our heads, sometimes the only safe refuge we know. We are driven there by others, by employers and dates and even casual friends who can say wrong things, even while trying to do right.
Almost all who have lived with a serious chronic condition for an extended period know the unsettling feeling of being marginalized by the chronically healthy around us. We are all too familiar with our own limitations, keenly aware of what others can do as we watch from our seats in the bleachers, forever the spectators. Gradually and grudgingly, we grow used to our second-class status because there is no way around it.
These regular moments frequently lack drama. And invariably they are subtle. There is no smoking gun dropped at the crime scene, little evidence that there even was a crime. The sick see and understand the soft discrimination against us. These exchanges can take place in the marketplace or in schools. Frequently they take place on the social scene, even within our own families.
I want to be normal. Please let me be the same as everyone else. These are the plaintive cries of the chronically ill, who are so often pushed to the side and made to feel different. Hurt runs deep.
Sarah Levin Weiss has battled Crohn’s disease most of her life. “I’ve always had the sense that I begin every race way behind the starting line,” she says. To cope with the ailment’s painful and disruptive digestive symptoms, she’s dependent on prednisone, a powerful oral steroid that has disfigured her face, stunted her growth and caused wild mood swings.
More complicated is that Sarah had an ileostomy, which means she lives every day with a bag that’s connected to her small intestine and hangs from her belly. Part of Sarah’s large intestine was badly diseased and needed to be removed. She refused the procedure for years, even as her doctors gently said it was time.
Who wants a bag, especially in a culture that pretends women do not go to the bathroom? Yet before she had the surgery, she was practically chained to a bathroom, unable to venture very far for fear of accidents.
Sarah glumly asserts that the bag is another sign of not being normal. I say back to her: It is the new normal. The ileostomy has set her free. She doesn’t bleed anymore, which was once a dangerous reality. She no longer closely orbits a bathroom.
Perhaps most important, she has carved out a life for herself that’s as close to normal as she can make it. She’s married to a man who understands her health issues and who supports her when she’s down. They are even trying to start a family.
“I am just trying to figure out what it is like not to be sick,” she admits. “It has been a long time. Can you ever get past the old body image?”
What a burden to carry. Sarah has cut the prednisone and is a very pretty young woman. Her battles are not over yet, though. Maybe those of us who are chronically ill don’t feel normal because we’ve forgotten what it was like. We just forge ahead, creating our own normal.