Living with an inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, is a challenge.
People with these serious conditions can lose weight during a flare-up and gain it all back – and then some – if they need to take corticosteroids to get symptoms under control. And it can be hard to find food that’s OK to eat, because the conditions differ for everyone.
For all these reasons, certain comments – such as those that focus on looks, weight, and diet – can be more harmful than helpful. From our friends at Health.com, here’s what not to say…
1.You don’t look sick
“That’s one of the hardest things about having colitis – people can look OK on the outside,” says Leigh Stein, 35, a fourth-grade teacher in Pittsburgh who was first diagnosed with the condition at 23.
People don’t realize that it may have taken that person’s last ounce of effort to get showered, dressed, groomed, and out the door, says Stein’s friend Gina Lynn, who also has ulcerative colitis (UC).
2.I know what you’re going through
When people with IBD tell someone about their condition, they often get an earful about that person’s digestive problems.
But it’s probably better to keep details of your upset stomach, diarrhea, or irritable bowel syndrome (an unrelated condition) to yourself.
“Don’t say you understand what they’re going through, because unless you have it you don’t know what they’re going through,” says Julie Novack, 44, a senior credit underwriter for Wells Fargo in Charlotte, N.C., who was diagnosed with UC at 22.
3.You’ve lost weight! You look great!
“My biggest pet peeve is comments about my weight – anything weight-related,” says Marge McDonald, 46, who runs a council on aging and senior center in Chelmsford, Mass., and was first diagnosed with ulcerative colitis 10 years ago. She recalls that when her mother, who also has UC, lost about 50 pounds, people kept saying how great she looked.
McDonald says she would think, “No, she doesn’t. Her skin is hanging off her; she looks gray.”
“We’re so focused on weight we don’t notice anything else,” she says.
4.Come on, try a bite!
By the same token, many people with ulcerative colitis and Crohn’s disease are by necessity very familiar with what foods they should avoid. John G. says he gets annoyed when people ask him why he eats the same thing every time they go out.
“Definitely listen to your body,” says Kristine Fulco, 29, a graphic designer in Brooklyn, N.Y., who was diagnosed with ulcerative colitis at 21 and says she’s fared much better by figuring out what foods are OK for her to eat rather than listening to generic advice. “Don’t let everyone else bully you.”
5.You’re so lucky – you can eat anything and stay skinny
Well, not really. Weight loss is often due to flare-ups that cause severe abdominal pain and bloody diarrhea that can mean spending most of the time in the bathroom.
And during a flare-up, a person may need to choose food very carefully so they don’t make symptoms worse.
“Stop, stop, stop telling people that they are lucky to be thin,” says Denise Lindberg. “I have to work to stay not malnourished.”
6.You must have a lot of stress in your life
Many people mistakenly believe stress causes inflammatory bowel diseases. There’s absolutely no evidence that stress or tension cause Crohn’s or colitis, although it can make symptoms worse for people who have the diseases.
A rogue immune attack on the digestive tract appears to be the cause, and the result is symptoms such as abdominal pain and chronic, bloody diarrhea.
Damage from inflammatory bowel diseases can be so severe it requires surgical removal of portions of the colon.