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People diagnosed at a young age take their cues from their parents, whose first impulse is often to counsel secrecy.
“When I got Crohn’s disease at 13, my parents told me not to tell anyone,” says Jonathan Vatner, 33, a freelance writer in New York. Vatner recently asked his mother why. “She said people would treat me like an invalid and that this was our problem as a family, not anyone else’s.”
As a teenager, Vatner followed their directions. “I told one person in the next six years. I’d take all these pills and hide them from people. I learned how to throw a pill into my mouth during meals from under the table. I was so ashamed.”
A 30-year-old woman who now lives in Israel said it was hard when she was diagnosed with Crohn’s at 14 and her parents told her to keep it to herself. “It was something I wanted to own by speaking about,” says the woman, who asked that her name not be used. “I didn’t tell anyone. My parents were superstitious. They believed if you talk about it, you give more energy to it.”
Such experiences underscore the dilemma facing those with IBD: Speak about your condition and you risk disgusting your listener. Don’t speak about it and you stifle one of the most important parts of who you are.
One would think that the proliferation of Internet sites, Facebook IBD pages, specialized camps for affected children and the Crohn’s and Colitis Foundation of America’s support groups scattered throughout the country would help patients feel less alone. But for many patients, emotional struggles persist, in part because others do not know how to provide a safe place for them to be open.
“Be empathetic, not sympathetic. Don’t baby the person,” says David Eisikovits, 52, of Brooklyn, who leads a support group in the foundation’s Manhattan office. “Give the person space and if they want to talk, let them talk. Sometimes we get smothered in pity and it makes people with IBD feel very self-conscious, helpless and low.”
According to one psychologist, there are legitimate reasons why some young people do not want to speak about their IBD to friends and others do.
“Some kids are more comfortable keeping it private, others want to share the truth,” says Fran Martin, a psychologist in Elkins Park, Pa., whose daughter, now 28, was diagnosed with Crohn’s at age 13. “It’s hard for children to find other children they can talk with. Who wants to talk about poop? That’s really what having IBD is about.”
“For kids, keeping it secret is a way to maintain a sense of control over something over which they have very little control,” she continues. “The toll of maintaining a secret as an adult is that while you maintain surface control, you get caught in a trap of isolation and it’s emotionally detrimental. We’re social creatures… who find comfort when they find even a small group with whom they can share their stories.”