Parenting and IC can be difficult at times, to say the least. One of the challenges ICers with children face is whether and how to talk with their kiddos about IC.
I remember going to see a movie when my daughter was in kindergarten. My husband suggested we go to the restroom before it started so our bladders would be empty. Of course, he meant that it would keep her from having to miss part of the movie for a bathroom break later. Instead, she gasped and got worried, mentioning how bladders are bad. Clearly she listened to some of our conversations about my bladder struggles.
Now that same daughter is a young teen and could tell you quite a few things about IC. She no longer thinks of bladders as being bad, but she does understand why sometimes mine seems like it is.
No matter how we feel about it, IC is part of our parenting journey. It impacts our children’s lives, even when that very fact breaks our hearts. From an early age, they pick up on cues and signs. When my daughter was 5, I didn’t even know she was aware of my bladder. I didn’t usually use that word when talking with her if mommy didn’t feel well. But she was listening nonetheless.
Just like with any deep conversation with your children, you can use a few strategies to help make the conversation easier. In the end, the goal is for them to understand how IC impacts your lives, and realize it isn’t a fatal disease.
Why You Should Talk with Your Children About IC
Let’s start with the why behind talking with your children about your IC. As parents, we want to shelter and protect our children as long as we can from the difficulties in life. While it may be tempting to just avoid the conversation, not talking about it can actually be harder on our kids.
IC impacts your life certainly, but it also impacts your family’s lives. Children have a right to know about something that affects the whole family. Not sharing the information with them can even make children feel left out when the rest of the family knows something they don’t.(1) Because, like I mentioned with my daughter, children are going to notice something isn’t right anyway. They really do pick up on things happening around them.
If they don’t know what is going on, then they are going to imagine all sorts of scenarios from you dying because of IC to them being the cause of you not feeling well.(1) Having accurate and age-appropriate information can help dispel their fears.
Another great reason to talk about your health with your children is to allow them the chance to grow in their compassion and empathy. Those are qualities we want our children to have, and can be a positive outcome of them having a parent with IC.
Finally, talking with your children about your IC allows your whole family to have more open and honest communication while also showing your children how to deal with adversity.(1) We want our children freely talk with us about their struggles; we can model that for them by talking about our own struggles. No matter their age, our children continually learn from us how to handle challenges.
How to Talk With Your Children About IC
Having serious or difficult conversations with our children can definitely be challenging. Know that you don’t have to have one big conversation about IC, especially if your children are younger. Because my IC came before my children did, my husband and I doled out the information in bits and pieces over time based on their ages. That might not be what works for every family, but these tips can get you on the right path to having an open and helpful conversation about IC.
1. Talk with your parenting partner beforehand.
As in all things parenting, being on the same page with your spouse is most effective. Make time to talk about what information you want to share with your children and how best to convey it.(2) My husband and I have had numerous conversations through the years as parents about how much to tell our children. We want to be open and honest with them, but we also want to be age appropriate. We don’t want to worry them unnecessarily. Having your partner able to be part of the conversation is helpful. He or she can give you perspective as someone on the outside of IC looking in.
2. Find a quiet time to talk.
Whether you need to explain IC completely to your children or share with them about an upcoming surgery or treatment plan, you want to have their undivided attention and give them your undivided attention in return.(2) Talking at the dinner table and in the car are often good times for conversation.
Another strategy my husband and I use is a monthly check-in with our children individually. It not only helps us connect more with them and learn what is going on in their lives, but it’s also a great time for any serious conversations we need to have.
3. Keep it simple.
Simple is best. You don’t need to overload your children with all the things about IC at one time. You also want to use words they’ll understand.(3) In the IC community, we can develop our own language using words and acronyms such as UTI, uro, hydro, frequency and urgency. Steering clear of these kind of words can help your children better understand what you’re talking about.
In order to keep it simple, think about the words you’ll use ahead of time. Frankly, talking about and explaining IC can be hard. I’ve struggled to put it into words many times. Our children don’t need in-depth information about the bladder lining or Hunner’s ulcers. What they most need to know is a general idea of what’s going on with you, how it impacts you and how it impacts them as a result.
4. Listen to them.
Make sure you are talking with your children and not at them. Talking about IC should be a conversation, which means you need to be open to what they have to say. They may have questions for you. Or they may tell you how they feel when you’re in the middle of a flare. Prepare yourself ahead of time to not be defensive or take things personally.
Early on in my IC journey, I learned that I needed to listen to my husband and how he felt about my IC. I also needed to not take it personally when he was sharing his frustrations about what I couldn’t do. The same applies when talking with our children.
5. Be honest.
Our children don’t need every detail about our bladder struggles, but talking honestly and openly about what’s going on and its impact is helpful.(2) You don’t want to overexaggerate IC or under-exaggerate it. Sometimes — especially for us moms with IC — we like to downplay when we’re feeling poorly. Our children can often see right through that, realize we aren’t being completely honest with them and then our trust is damaged.
We need to be honest about our physical self and our emotional self. While you want to maintain a positive attitude, it’s also OK to let our kids see us in the struggle and how we work through it physically and emotionally.
6. Reassure them.
Let your kiddos know that you are in this together and you are doing all you can to live your best life — in spite of IC. Give them reassurance that you have medication and treatments as well as doctors helping you. Also, for little children, be sure to emphasize that your IC is in no way their fault. Let them know no matter what and no matter how you feel, they’ll always be taken care of.(3)
7. Talk about the impact.
We might be determined to not let our lives be dictated by pain, but the truth is sometimes it is. It interferes with plans and messes things up. Talk with your children about this. Help them to understand when plans change at the last minute because you woke up in a raging flare. (And an IC mom tip I stand by is not telling my kids about plans too far ahead of time, so they won’t even know about them to be disappointed when something changes.)
Share with your children ways in which you may need them to help you during times of flare. Maybe they can carry the laundry basket for you or refill your water. Be sure to also include the positive impact as well. Flare days can be a great excuse to snuggle and read or watch a movie together!
8. Keep the lines of communication open.
Let your children know they can always come to you if they have questions or worries that pop up later on. Maybe they’ll think of something later and want to ask about it. You definitely want them to feel free to do so in order to give them accurate information and help them through it.
References
- Scottish Partnership for Palliative Care. Talking to Children about your Condition. Nov. 16, 2023.
- McCarthy C. How to talk to children about the serious illness of a loved one. Harvard Health Publishing. Jan. 14, 2020.
- Bowman KD. I’m a Mom with ALS: How to Talk to Kids About Growing Up With a Chronically Ill Parent. UVA Health. June 7, 2022.
