Six Faces of the Stigma of Crohn's Disease

"But the thing is," he lowered his voice, "They were afraid you might miss work."

The job was a new one. It had just been created, and it involved supervising 34 writers and artists. Although it was perfect for me, one of my co-workers had been selected to fill it.

Despite the fact that I had never been absent even a single day in a year, word had somehow inched through the office grapevine of this very large company that I spent a lot of time in the bathroom. I had told no one at work that I was a Crohn's patient.

Yes, there is a stigma attached to having Crohn's disease. It has at least half a dozen faces:

1. Contagious disease. Invariably, when an acquaintance learns I have an inflammatory bowel disease (IBD), about which he or she knows next to nothing, I can count on The Question: "Can I catch it from you?" This implies that I might be a totally self-absorbed individual who cares nothing about exposing others to some horrendous illness. There is no proof that Crohn's disease is contagious. But telling people you have it will cause the crowd to scatter anyway.

2. Imperfect partner. "I didn't marry someone I couldn't take to social events." At first, I thought he meant I was too sick to attend an occasional function. Then I realized he was embarrassed to be seen with a wife suffering from a "bathroom disease."

3. It could happen to me. Sooner or later, an individual who has Crohn's disease will encounter people who feel this way. They don't want to associate with patients with this illness lest it remind them of their own mortality and the possibility that they, too, could become sick. In an effort to promote a little charity, as a volunteer, I always remind patients of one scenario. Imagine, I begin, that you're visiting a friend in the hospital who has just had surgery for cancer. If you're honest, you'll admit that while you're genuinely sad that your friend had to go through all this, a tiny part of you is relieved that it's not you in that bed.

4. Squeamishness. "Anne's lost 30 pounds," my good friend Jeff said. Then he confided, "But that scar. It's just horrendous. I can't look at it." He shuddered. He was referring to the stem-to-stern incision his wife had received two months ago during a small-bowel resection for Crohn's disease. No cute bikini cut or laparoscopic slice here. Since I have had three of these incisions, I had to resist the urge to kill or maim. I also hurt for Anne.

5. Assumptions. I was shocked to find out a former best friend hadn't invited me to be in her wedding party. I gently asked her why. "Oh," she revealed, "Bill and I were afraid you might have to run out to the bathroom during the ceremony. You can come to the reception, though, if you think you can eat any of the food."

6. Slacking. If I unloaded one more drawer of that file cabinet, I though I would pass out exactly where I stood. My joints were killing me. I was beyond tired and sat down wearily on a stool beside the files. One of my co-workers approached. "Taking a break again?" she snapped. "Every time I look at you, you're sitting down." For those of us who take drugs to suppress our immune system, the sight of a protective mask or even avoidance of someone who's clearly sick can also trigger a few sarcastic comments.

Yes, these are commonplace and unpleasant reactions patients with Crohn's disease might encounter during their journey with this condition. But here's the rub: there are lots of medical conditions that will generate the same insensitive responses and that have a stigma attached to them. Consider, for example, HIV/AIDS, cancer, amputation, grand mal seizures and even mental retardation. The stigma associated with having Crohn's disease isn't unique.

Life is to an extent what you make of it. It's too short to spend much time stewing over what others think. The time is far better spent celebrating the good times.