My diagnosis seemed completely, unbelievably impossible, because I, like most people, presumed that cirrhosis was the result of "bad lifestyle choices." How could a forty-one-year-old "goody two-shoes" have the horrible disease of a homeless derelict? At the time of diagnosis, I was unaware that only about 70 percent of cirrhosis cases in the United States are due to alcohol consumption; that leaves 30 percent due to other causes.
I soon discovered that the stigma of cirrhosis extends even to the nonalcoholic variety. I heard of other patients being called liars and closet drunks by their doctors. A relative of mine who had heard about my diagnosis emailed me that she didn't know I drank so much. I saw pharmaceutical ads euphemistically refer to "liver problems." With heightened awareness, I saw how the mention of cirrhosis led to the conclusion that alcoholism was to blame.
I joined in the subterfuge and no longer tell anyone but doctors that I have "cirrhosis." When declining to be served an alcoholic beverage, I just say that I don't drink. When pressed, I say that a medical problem prevents me from enjoying the champagne or whatever. Even family used to press me to have just a little glass, saying that a little wouldn't hurt me—because I'm not an alcoholic. (This Christmas, though, a dozen years after diagnosis, the message seems to have finally sunk in, and they did not pressure me to imbibe.)
Once upon a time cancer apparently carried a great stigma. Perhaps it was First Lady Betty Ford who stamped it out with her public acknowledgment of breast cancer, not to mention her substance abuse issue. Maybe all it takes is a celebrity with nonalcoholic cirrhosis to raise awareness of the "30 percent." One feels a bit guilty, however, in hoping for a celebrity to develop nonalcoholic cirrhosis.
Perhaps other causes of cirrhosis will reduce the stigma. It now seems that cirrhosis can also be caused by "fatty liver disease," often a result of obesity. But there it is again—the lifestyle issue. And again, one feels a bit guilty that obesity could have an "up" side.