How Chronic Illness Affects Our Parenting (And Why It’s Okay!)

This post may contain affiliate links (full disclosure policy). As an Amazon Associate, I earn from qualifying purchases.

Being a mother is hard. And moms with chronic illness certainly don’t have it easy! Here are five things this moms with chronic illness want you to know.

Being a mother with a chronic illness comes with it’s own set of unique challenges. We all suffer from mom guilt from time to time, but I’ve come to let go of a lot of the motherly stress and guilt caused by my condition. I’ve learned that this disease affects my life and my experience as a mom in ways I simply cannot help, and in ways that sometimes able-bodied people don’t realize or understand. So here are a few things this mom with a chronic illness wants you to know:

Be Advised: I write this post from the perspective of someone living with type 1 diabetes, which you can learn more about here. I can’t and won’t pretend to know what it’s like to live with lupus or MS or other chronic conditions I’ve never experienced, but I suspect there may be some overlap in how we all feel about our illnesses and how they influence our lives as mothers. Not every person with type 1 diabetes–or a chronic illness–feels the way I do about their disease. Please bear in mind that psychologically, these things affect us all differently, and that’s okay!

5 THINGS THIS MOM WITH A CHRONIC ILLNESS WANTS YOU TO KNOW:

1) I have an extra child you don’t know about.

I always say that type 1 diabetes is my first born child. It requires constant monitoring, constant attention. I can’t let my blood sugar wander off without knowing where it’s going or it will get into some serious trouble. I need to know where it is and what it’s doing at all times.

And don’t even get me started on sleep! It wakes me up at night as often as my daughter does—even more so now that my daughter regularly sleeps through the night. When my continuous glucose monitor beeps letting me know my sugar is high, I have to coddle it. I bring it juice and pray it goes back down soon so I can go back to bed. Getting used to night feedings with an infant was hard, but I can’t imagine how much more difficult it would have been had I not already been used to waking up at night to check on my blood sugar.

Having diabetes is very much like having a child, except children sometimes do what you ask, can be left with a babysitter when you need a break, and generally don’t try to kill you. I guess there are only so many parallels.

The point is, as a mother with a chronic illness, I’m juggling more than meets the eye.

2) If you want to judge my parenting, please try to understand the full story.

When you try to give my infant daughter a french fry or my toddler a cookie or an ice cream cone and I say no, you don’t need to roll your eyes or tell me to chill out or explain that it’s okay for her to have it and that I can’t keep her in a bubble. I know all that, but I choose to not make food like that a big part of my kids’ lives. And when I tell you this, it isn’t said in judgment of how you feed your kids. That’s not my business!

I’m careful about what my children eat for a reason. Try to remember that I’ve experienced how devastating it is to realize you can never again eat with impunity. If God forbid my daughters (who are genetically at risk for type 1 diabetes on both sides of their family, by the way) ever get diagnosed with this disease, I want it to change their lives (and diets) as little as possible. I don’t want my kids’ joy to come from junk food as mine once did. If you think that makes me “no fun” or “too controlling,” so be it.

The truth is, my disease sometimes keeps me from always being the “fun” parent I’d like to be. I snap at my toddler when my blood sugar is low, and I let her watch too much TV when high sugars have me exhausted. You can judge me, that’s fine. But it won’t make me feel guilty.

The point is, as a mother with a chronic illness, the way I parent is influenced by factors most people don’t feel compelled to consider. Just know I don’t feed my kids carrots, or breastfeed (which may offer a measure of protection against type 1 diabetes), or keep my kids away from yours when your family is sick because I think I’m a better than you. I do it because I have a chronic illness, and my kids might have my crappy genes.

3) The fear can be paralyzing.

My psychologist called it “catastrophic thinking.” It often starts when I get a bill in the mail for the medical supplies that keep me alive. It doesn’t have to be a big bill, just enough to make me think about what would happen if one day we couldn’t afford or get access to insulin. How long would I have before I died? Or worse, what if I never go without insulin–but die in my sleep anyway? It’s called dead in bed syndrome, and it’s a real thing.

The fear doesn’t stop there. As a parent, my greatest fear is my daughters developing type 1 diabetes. Their odds of getting it are very low, and so far all tests indicate there are no predictive markers of autoimmunity in either of their blood. But that doesn’t mean they’re out of the woods. We’ll be testing them regularly, to be safe. We’ll also be getting them life insurance policies so they can always have a lower premium should one of them get diagnosed with something later. Just in case.

In the meantime, I do little things for my daughters that they don’t know about in case I die sooner than I’d like. My husband’s mother, my daughter’s namesake, passed away at 36 after battling type 1 diabetes for 30 years. She had a small journal of letters she wrote to her son when he was growing up, and I’m doing the same for my daughters. I hate being in pictures, but I take selfies of them and I together frequently so they can have them later. When my girls are a little bit older, I’ll be teaching them how and when to dial 911 and say “My mom has type 1 diabetes and needs help.” Not because I expect to die, but because it’s a reality I have to think about.

The point is, as a mother with a chronic illness, the fragility of life is extra salient to me. It means I have to work hard to keep anxiety and depression in check, and it means you telling me to “not worry so much” or to “be positive” isn’t enough. It means I have demons to fight that you may not understand. And yes, I’ve gotten therapy :)

Update 2022: This sort of health-related anxiety was particularly challenging when the Covid-19 pandemic hit: The same people saying that “it only really affects the elderly and immunocompromised” were telling me I was worrying to much about the possibility of severe illness or developing long Covid. When you have a chronic illness, sometimes these worries aren’t all that far-fetched.

4) Having a life-threatening illness has made me stronger.

Diabetes is a disease that’s stigmatized and mocked for laughs. It’s a hashtag people put next to photos of their desserts on Instagram. It isn’t sexy. There’s no trendy challenge. It’s food-policing and judgmental comments and being misunderstood. It’s things that can really beat you down.

Diabetes, especially type 1, is constant vigilance. It’s hoping you wake up in the morning and knowing there’s a chance you might not. It’s doing everything right and still falling short. It’s trying to control the uncontrollable to stay alive and live well. It’s expensive and incurable, and in some cases, completely unpreventable. It’s anxiety and depression and fear of death. It’s terrifying.

But it’s also so much more than that. It makes me stronger. It makes me appreciate the little things. It pushes me farther than I thought I could go. It makes small victories tremendous and old worries insignificant. It makes me look for silver linings. It makes life even more precious.

Diabetes forces me to fight, and that drive has made me successful in other areas of my life in which I never thought I’d find success–like having a healthy pregnancy and breastfeeding past a year. I want to be an example of perseverance to my kids, and hopefully my experience with diabetes helps me be just that.

Even though it isn’t always easy, I thrive with something multiple people have told me they’d rather die than live with. I’m pretty damn proud of that. And that pride keeps me going.

I am a mother with a chronic illness, and although it may weaken my body, I am stronger than I was without it.