How is she today? “Well, I’m six months pregnant, and people say I am glowing,” Sarah told me recently.
When I heard this, I was shocked and elated. Sarah and her husband had been trying to conceive for some time. “And I have been having problems with my stoma,” she added. Sarah has an ostomy, and the stoma is the flesh tube that connects belly and bag. “I constantly look down and see it and realize I will have this for the rest of my life. I hope that having a kid makes me feel normal, positive instead of negative.”
Chronic illness is a private hell. Our lives are altered, our strengths and abilities diminished. Sometimes we need special access to buildings and transportation. Some of us need extra time or attention to perform life’s little tasks. We endure a constant need to explain, to educate and convince others that we’re not more trouble than we are worth.
Jennifer Jaff, an attorney who heads up the group Advocacy for Patients with Chronic Illness, argues that ignorance and squeamish reactions to the sick stem from a fear that illness can strike anyone at any time. “We represented a 20-year-old woman with intolerable pain from head to toe,” Jaff told me. Her insurance company had cut her off. Two of three doctors did not support her appeal.
What people need to realize is that we are not talking about nameless, faceless persons down the block or around the corner. If we are lucky enough to enjoy good health, a family member or friend, neighbor or colleague is anything but.
Jennifer Jaff gets it, because she lives it every day. Jennifer, like Sarah, lives with Crohn’s disease and a painful inability to digest food, accompanied by chronic nausea.
But people can’t see her sickness. It’s not a broken bone. We can’t see heart disease either, or diabetes, neurological problems, or pulmonary disorders. Diseases of the mind are rarely obvious. And we are not looking anyway.
Emmy-winning TV producer and author Richard Cohen has lived with multiple sclerosis for more than 30 years. He writes bi-weekly about living a full life with a chronic disease.