What it’s really like to be a parent with chronic illness

Parenting with chronic illness is hard, and it’s not something we talk about very often. No one teaches us how to let go guilt, maintain boundaries, or how to interact with our kids while preserving our health. So here’s a few things I’ve learned along the way.

1. Let go of the guilt

We all spend a good amount of time feeling guilty, it just comes with the territory. Even healthy parents carry guilt about whether they are working too much or not providing enough for their kids. Parents with chronic illness just get an extra dose of guilt because we have more limitations.  I always worry about the fact that I’m not involved more with my kids’ school. I sometimes think I’m the worst Mom because I don’t volunteer very often, but I’d rather save my energy for when my kids our home. Still, I often torture myself with guilt even though there is nothing I can do to change the situation. That kind of guilt is pointless and I know I need to let go. What’s important is that I love my kids and I take care of them. I may not be super PTA mom, but I still spend lots of time with them.

2. Maintain boundaries

It’s difficult to maintain boundaries when you have a chronic illness and it’s even harder when you have to maintain boundaries with your kids. My kids know that I want to do as much as I can with them, but I do sometimes have to tell them no and they need to abide by that. We can talk about how it makes them feel, but there is no guilting me into doing something I can’t physically do. When my kids were young they didn’t fully get the concept of boundaries, but now that they’re older they know what to expect. 

It sounds horrible and selfish but you have to put yourself first when you have a chronic illness. It’s just like the oxygen mask on the airplane, you have to put yours on first so you can help your child put on theirs. We need to take care of ourselves first before we can take care of other people. It doesn’t do anyone any good if we’re a mess. There are times when I have to put my health first and tell my children no. They don’t like it, but over time they have observed that if I physically can do something for them I will do it. If I say no it’s for a real reason and I’m not just putting them off.

3. Find ways to interact with your kids that don’t suck all your energy

I always imagined I’d be the parent to teach my kids how to play soccer, basketball and other sports. I love being active outdoors and I want to pass that onto my kids. Unfortunately those activities are all energy suckers, so I’ve had to turn to other options. When they were younger I would work with my kids on their reading or read books to them because that didn’t require any movement. I also sat at the kitchen table and talk with them while they colored. My daughter and I often spent our time together doing yoga. One of my sons’s favorite activities was when I laid on the floor and build blocks with him.

Now that my kids are older they can play independently, but I still make sure to spent lots of time talking with them and finding out how their doing. I also play a lot of board games with them, because that doesn’t require too much energy. It’s not flashy or fancy but we enjoy spending time together.

 

You have to find what activities work for you and your child. It’s going to be different for everyone, but the good news is there are easy ways to interact and teach your kids without expending too much energy. A trip to Disney World may be more exciting, but what your child is going to remember is that you spent time with them.

What ways have you found to spend time with your children or grandchildren?