How to Cope When IBD Is Part of the Family
Crohn’s disease is disruptive…not only to the life of the person that has it, but to everyone around them. Flare-ups that cause cramping, fatigue, and the need for frequent and urgent bathroom breaks mean that everyday plans often get canceled or ruined. When this inflammatory bowel disease enters the home, it can also be emotionally and physically draining. “Chronic illness is like dropping a pebble in a very still pond; the rippling effects can reach far and wide,” says Frank Sileo, Ph.D., a licensed psychologist who has had Crohn’s for 30 years. Here’s how families can cope with some of the biggest Crohn’s hurdles.
Make Peace With FOMO
Crohn’s has a knack for ruining all kinds of plans, says Daphne Subar, whose now 20-year-old daughter was diagnosed with Crohn’s at age 8. “We never knew when she would need to go to the hospital or when plans would be canceled. We tried not to let it stop us from doing certain things, but it was inevitable,” says Subar, who lives in Studio City, CA. When her daughter got sick, one parent stayed home from work to care for her. “On a road trip to Idaho, I ended up spending the day in the ER with my daughter, while her dad and sisters went river rafting. It was hard on us all.”
Go Ahead and Make Plans Anyway
Will you ever know when you must jump into an alternative reality? Nope, but it’s no reason not to try. “One day, someone with Crohn’s might be fine, but the next day they won’t,” says Julia Katzman, an adolescent therapist at Plan Your Recovery, a mental health treatment center in St. Louis, who has had Crohn’s since she was 9. Take advantage of all the good days, even if you don't know exactly when they'll be.
Give the Crohn’s an Identity
Personalize the disease as an additional family member, says Katzman. “Reframe it as an agent that’s beyond your control. This won’t stop Crohn’s from having an influence on your life, but it can take away some of the guilt and shame associated with it." Plus, it helps you think of it more as an external entity that you have to compromise with. For kids, personifying their Crohn’s can also better help them explain it to others when questions arise outside of home.
Look for the Humor
It’s hiding there somewhere! “Humor isn’t a magic cure, but it can take the edge off of hard situations,” says Katzman. “If you can laugh at something, it removes some of the terror of the unknown. We all know that situations that feel pretty awful in the moment can sometimes become humorous, given enough time and distance.” Sure, you might still get upset and that’s okay. When you’re over the initial upset, think: “Wow! Won’t this make a crazy story!” Plus, she says, “laughing is good for your health.” It’s a win-win.
Remember to Use Your Words
Communication is key. “It doesn’t change the situation, but it can act as a protective factor against resentment and misunderstanding,” says Katzman. This helps deal with family, friends and healthy siblings. It’s also necessary to explain why a parent with the disease sometimes has to put their own health ahead of their children. “When you’re in debilitating pain, you can’t really engage in a lot of parenting or work behaviors until you get that pain under control. It consumes your focus. It’s not even a choice—it just exists.”
Let Siblings Be Angry…and Jealous
Explain to healthy siblings what it means to have a chronic illness, says Subar. Her two older daughters didn’t always understand why their sister could stay home from school for a “stomach ache,” and they couldn’t. "Allow siblings to express negative feelings of anger, jealousy and resentment in a safe way,” says Sileo, author of a children's book on Crohn's, Toilet Paper Flowers. Don't say: "You shouldn't feel that way,” or “You're a selfish brother." If siblings act out or express feelings of depression, seek the help of a therapist.
Protect Your Ill Child
“Children with chronic illnesses may be bullied, rejected, excluded or blamed by others because they are different or sick,” says Sileo. Listen to your child and watch their behavior. “Kids may not tell you that they feel like a burden,” Sileo says. Ask them to report not only on the facts of the events of their day, but also how he or she felt about it. It’s important to not minimize their perceptions. “Help children deal with strong feelings of sadness, anger toward the disease, and fear about the present and future.” If your child is being bullied for their Crohn's, in addition to engaging the community for a solution, help him or her be proactive in the resolution, too.
There is help available so you can manage Crohn’s as a family and find others going through similar situations. To find local or online support, contact the Crohn’s & Colitis Foundation. Subar’s daughter attended The Painted Turtle summer camp for children with chronic diseases. They now offer virtual camp programs for the whole family. Well Spouse Association is also a place for a healthy spouse to find support.
Just know, if you or a family member are diagnosed, you are not alone. Reach out and find others who have been there/done that and can support you and your loved ones along the way.