11 Things Not to Say to Someone With Crohn's Disease or Ulcerative Colitis
What not to say
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. Here's what not to say.
You don't look sick
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).
I know what you're going through
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.
You've lost weight! You look great!
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.
You're so lucky; you can eat anything and stay skinny
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."
You've really put on weight!
Fortunately, this effect tends to go away when the person stops taking corticosteroids. Until then, the best approach to commenting on weight or looks to a person with IBD is not to comment at all.
Is it OK for you to eat that?
"Different foods affect different people differently," Stein says. "It's a trial-and-error thing, and each individual figures out what's OK and what agrees with them. Crohn's and colitis patients know what they can eat, and when someone's looking over your shoulder and commenting, that's kind of bizarre."
Come on, try a bite!
"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."
You must have a lot of stress in your life
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.
Can you wait until the next exit?
If you're in the car with a person with ulcerative colitis or Crohn's disease and they tell you they need to go, listen to them, Novack says.
"One of the biggest fears of probably anyone with ulcerative colitis or Crohn's is getting stuck in traffic," she says. Just help them find the closest bathroom, and get them there as soon as possible. Another question not to ask: "Why can't you just hold it?"
Why are you so tired?
Jill Plevinsky hates when her friends and family try to get her to do things she's not up for by saying, "Oh, come on. You can't be that tired." She likes to answer them by saying, "If you lost as much blood as I do with each bowel movement, you'd be pretty wiped out too."
You need to change your diet
Although the food a person eats can affect their symptoms during a flare-up, there's no evidence that diet causes inflammatory bowel diseases or brings on flare-ups. It is important, however, for people with colitis and Crohn's to eat as healthy and balanced a diet as possiblewhich they most likely know already.