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How I Told My Kids About My Crohn's Diagnosis

For years, I didn’t think I’d ever tell my kids that their mom has Crohn’s disease. I had worked so hard for so long to achieve remission... so I was tired of dealing with Crohn's when my first was born. As a result, I never shared what was going on and often focused on how much I wanted to be a "normal" mom. But over the past year, my 5-year-old started to notice that there are some things about me that are different -- I’ve missed out on some family activities, sometimes I’m eating different meals than the rest of the family, and I seem to need to go to the doctor’s office and “rest” more than others. When he asked, “Do you think you’ll feel well enough to go?” before a trip to Chuck E. Cheese, I knew that I needed to tell him what was going on. In honor of his 6th birthday this week, I wanted to share how we were able to have a wonderful conversation about the disease.

1. I started talking to the kids about Crohn’s disease before I shared that I have it.

Since my son has never known that I have this disease - and he's old enough to freak out about my health - I had to be smart about how I shared things. What is Crohn’s disease? Where is it located? How does it feel? I first discussed the disease as something to learn about – without the added worry of how it may affect their own mother. Using a children’s book to introduce the topic really helped frame the basics of the illness. Our book followed a child who developed and then took charge of his Crohn’s disease, supplied by the Crohn's and Colitis Foundation.

My 5-year-old was very curious. We looked at pictures of the digestive system and talked about the process of food traveling through the body, and why having an issue in the digestive system may cause problems for someone. There are a lot of layers to chronic illness that we talk about as adults, but this was not the time to talk about ALL of those realities. Over the years, I’m sure that he’ll get to know about how difficult it may be to manage Crohn’s disease. But for now, we wanted him to understand the basics of the illness, know that it can be treated, and that people will mostly be OK. We introduced the basics as something to simply learn about, and answered any questions that he may have had. He definitely made a few poop jokes, but I just moved right past those...

2. I chose a quiet, normal moment to share that I have Crohn’s disease.

Rather than wait for a day when I might be missing out on an event, attending doctors’ appointments, or in pain and struggling, I picked a sunny, quiet Saturday. I introduced the topic at lunch and pointed out the fact that I choose not to eat apples because I can’t digest their skin normally... because I have Crohn’s disease. His eyes grew wide and he gasped, “you do!?” His first response was to worry, but I assured him that, while I do sometimes have trouble, I work with a great doctor and take meds, and I am able to do the things that I want to – just like the boy in the story that we had been reading. Once I brought the conversation back to the information that he had already received, he immediately looked calm and replied with a thoughtful, “oh.”

I let the information hang in the air for a minute or two. I wanted to let him take the lead. Then he asked his first question: "Will I ‘catch’ it?" This is largely a reflection of his age, and I think that different ages will ask different questions. Being prepared for questions is helpful. He was relieved when I told him that he couldn’t “catch it” from me. “Why do you have it?” was his follow up question, to which I responded: “my body was just built this way, so I do my best to work with it.”

After giving him the information, I let him take the conversation as far as he was comfortable going. He asked a lot of questions over the first few weeks, and each time we talked about it, we always brought things back to the biggest point: that people with Crohn’s disease can visit a doctor, make some life changes and maybe take some medications, and get back to living a life that is very similar to the one that they were previously living. I never know when the disease may show up again, but each time I’m able to treat it and feel better -- that is a point that he feels comfortable with right now. He knows that this may not be everyone's reality, but that this is how his mom is able to handle the disease. He's six and worried about his mom's wellbeing -- I need to support the need for him to feel secure in my health while also being real about the fact that his mom has a chronic illness.

After the first month or so, the questions calmed down considerably from my oldest... and my youngest has never been too interested in talking about it (probably because he's only 3).

3. I started out small when exposing the kids to how I was really feeling.

After sharing my official diagnosis, I’ve started small by being more open when I’m not feeling well. I show them where it hurts on my abdomen, and what I think might be going on. Their kindness and sweet kisses are very loving in response. As much as I love to see them try to take care of me and rub my back, I also make sure to highlight good moments when I’m feeling better. I talk to them about how hard I work to take care of my body. No matter how hard I work, though, there are times when I can't control the disease within me, but I can control how I handle it -- i've been open about this part of chronic illness, too. My kids learned about how I use walking and yoga to support my joints when they hurt, and running to build strength when things don't hurt as much, for example. They see me constantly stop and start over again as I cycle through the symptoms of the disease. I'm trying to teach them that it's not about reaching an end goal, but that I get back out and try again each time I feel well enough to do so.

Letting my kids into my world a little more has taken some of the pressure off of hiding how I’m feeling. Things feel a little more manageable, and I don’t panic as much about the next serious Crohn’s flare that may require a trip to the hospital. My kids may never stop worrying, but now they’ll be a little more equipped to handle medical issues that pop up for me in the future. As a true test of this theory, my children recently watched me go through gallbladder surgery. The fact that I would go to the hospital was no longer scary for them, and they were very attentive when I got home. After learning about the digestive system, they were very interested in talking about the role of the gallbladder and how a person could live without one.

I'm so glad that I chose to be more open with my kids. By sharing my diagnosis in a way that was calm and focused on information spread out over time, the kids learned to feel comfortable talking about bodies and how they may be different from one another. They also learned to feel a little less panicked about moments when I don't feel well. I'm so glad that I shared my disease with the kids, it's helped to bring out their nurturing side and may just teach them to take care of themselves, as well as others who need a little more help to stay well (like their mom).

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