Suddenly, Levy felt her ulcerative colitis (UC) flaring up. “I felt terrible and knew I was going to have an issue,” she says. “So I had to tell Dylan, ‘Mommy needs to use the bathroom. We really need to go.’” Levy, who was diagnosed with colitis at age 16, didn’t want to scare her daughter but admits that, at the time, she was in a great deal of pain. “I was so sick,” she says. “I didn’t want her to see me this way.” Today, Levy looks back on that incident as just one of the many times when her now-grown daughter had to see her in pain. “It was hard because she could see Mommy wasn’t like everyone else,” she says. Nor is she alone. An estimated 3 million Americans have inflammatory bowel disease (IBD), including UC, according to the Centers for Disease Control and Prevention. Many are parents, who have had to not only manage their symptoms but also explain them to their children. “Anytime there’s anything going on with a parent, whether it is UC or cancer,” says Robin Gurwitch, PhD, a psychologist and professor at Duke University Medical Center in Durham, North Carolina, “parents or caregivers need to talk to their children directly about it. “Though it may be difficult, an explanation of what is happening to Mom or Dad needs to originate from the caregiver. Don’t wait for the child to bring it up or for them to ask.” But talking about your UC with your child goes beyond simply telling them that you have a chronic condition, says Dr. Gurwitch. Here are seven things you need to remember when discussing your UC with your child.
1. Ask Them What They’re Thinking
Your child may notice that you have to leave birthday parties early or can only go shopping for a brief amount of time, says Gurwitch. If that’s the case, ask them directly what they think is happening. “That gives you a starting point with your child so you know [what they’re thinking],” she says. “In their mind, it’s probably far worse than what’s really happening.”
2. Use Appropriate Language
Adults sometimes want to avoid using medical terminology, says Gurwitch, but if you’re explaining UC to your child, it’s important to be clear and use the right words. “Kids come up with their own interpretations of things all the time based on what they overheard their parents saying,” says Gurwitch. “They may hear things they don’t have the knowledge about or they may not understand all the words, so they fill in the gaps. Sometimes they can make it worse or be completely off the mark.” Gurwitch also recommends using language that’s developmentally appropriate. “Explain it like, ‘Mommy has something that’s called ulcerative colitis — give the exact name for it — and we sometimes call it UC. That means that my belly doesn’t work the same as your belly.” This extra explanation can alleviate some of the child’s anxiety and fear behind a parent’s condition. Gerald Buldak, 43, a father of three who has colitis, tried to explain what the disease feels like so his children could understand what was happening to Daddy. “Keep the discussion on a level they can understand,” he says. “They know what a tummy ache is, and they’ll understand when it’s pitched as a tummy ache that won’t go away.”
3. Validate Their Feelings
Gurwitch recommends digging deep and asking your child not only what they think is happening to Mom or Dad but also how that makes them feel. “They may say they’re feeling really sad or angry or scared,” she says. “For a parent to validate that helps tremendously for a child.” It’s also OK to admit that UC also makes you upset or sad or worried, says Gurwitch. This not only validates the child’s feelings but also gives them an idea of how you’re handling it as an adult. “There needs to be that balance of not only listening to your child’s feelings but also showing him or her what you’re doing to take care of yourself,” she says. Gurwitch recommends saying something like, “‘I don’t always know when my belly is going to be upset. I do everything I can to be prepared. I’m working very closely with my doctors, who know about this a lot, and they’re trying to make sure I stay as healthy as possible.’”
4. Ease Their Emotional Burden
It’s not uncommon for kids to feel guilty about the situation — as if their parent’s flare-up was their fault. “We need to reduce the perception that [the child] caused a flare-up,” explains Gurwitch. She recommends saying something like, “‘I’m doing everything I can to stay healthy, and there’s nothing else you need to do besides be the great kid you are. And if I need help from you, I will let you know.’” “Make sure they understand it’s not their fault,” adds Buldak. “Even kids can experience survivor’s remorse.”
5. Make Them Feel Safe
It can be hard for children to be separated from their parents, and if your UC symptoms have sent you to the hospital, your children may start to feel sad or alone. “Young children need to know that there will be someone to take care of them,” says Gurwitch. “That’s scary to think for a child, ‘If Mommy goes to the hospital, what happens to me?’ They need a sense of security.” In that case, reassure your child that there will always be someone available to take care of them — either your partner, a grandparent, or another close relative. When Baldak has had to be hospitalized for his condition, he’s kept in touch with his children whenever possible. “If you’re stuck in the hospital, they really need to be able to see you and know that you’re OK,” he says. “Facetime, Zoom, and Skype are all valuable tools that you can use to reassure your kids that it’s going to be okay and you’ll be home soon.”
6. Keep the Dialogue Open
It’s good to ask your child a lot of questions, says Gurwitch, but make sure you’re allowing them to ask questions too. “Children should leave any discussion knowing that they can ask questions at any time,” she explains. And be patient. “Younger children may ask the same question over and over again, even though you may repeat the answer the same way every time,” she says. “It takes young children a little longer for the answer to process and internalize.” Kids also repeat questions when they’re anxious, distressed, or simply don’t understand, she says.
7. Be a Good Role Model
Kids need to see that their parents are taking care of themselves, says Gurwitch. That means eating a healthy diet, getting enough sleep, and more. “Talk to your child about how important those things are,” she says. “Children want to see that their caregiver has things under control.”
