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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 is some overlap in how we all feel about our illnesses and how they influence our lives as mothers. Not every person with type 1–or a chronic illness–feels the way I do about my disease. Please bear in mind that psychologically, these things affect us all differently.
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 UNDERSTAND THE FULL STORY
When you try to give my daughter a french fry or a cookie or a bite of ice cream 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 part of her life. And when I tell you this, I’m not judging you for feeding your kids chicken nuggets.
Try to remember that I’ve experienced how devastating it is to realize you can never again eat with impunity. If God forbid my daughter ever gets diagnosed with this disease one day, I want it to change her life (and diet) as little as possible. I don’t want her joy to come from junk food as mine once did. If that makes me “no fun” or “too controlling,” so be it. My daughter can eat how she wants when she’s older. But for now, in this brief moment I have to shape her palate, I’m just doing my best. And besides: on a long enough timeline, none of us eat with impunity.
And on the flip side, my disease sometimes keeps me from being the 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 so aggressively, for that matter) because I think I’m a better than you. I do it because my kids might have my crappy genes.
3) IT’S NOT EASY FOR ME TO HEAR ABOUT YOUR PREGNANCY
Type 1 diabetes doesn’t keep me from getting pregnant, but it does make it hella difficult. There is lots of talk from doctors about all the things that can go wrong and little—if any—comforting discussion of the odds that none of those things will ever happen. You’re expected to maintain a level of glucose control that’s near impossible at a time when your body’s insulin needs change as often as every three days in a manner that is virtually unpredictable. It’s a 40 week long big stakes game of guess and check.
Being pregnant with diabetes is without a doubt the hardest thing I’ve ever had to do. And even though it probably shouldn’t be this way, it’s sometimes hard to see other moms get to enjoy their pregnancy. Get to give into a pregnancy craving. Get to sleep a full night without waking several times to check their sugar. Get to go about their lives without being afraid of what might happen if you guess your next insulin dose wrong. Those kinds of things.
The point is, it’s not that I’m not happy for you. It’s not that I think I have it worse than everyone else, and it’s not that I don’t want to hear about your pregnancy. I do! It’s just that talk of pregnancy also reminds me that I will never have a totally normal one. This is simply something I have to deal with.
4) 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 daughter developing type 1 diabetes. Her odds of getting it are very low, and so far all tests indicate there are no predictive markers of autoimmunity in her blood. But that doesn’t mean she’s out of the woods. We’ll be testing her yearly, to be safe. We’ll also be getting her a life insurance policy so she can always have a lower premium should she get diagnosed with something later. Just in case.
In the meantime, I do little things for my daughter that she doesn’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 daughter. I hate being in pictures, but I take selfies of her and I together frequently so she can have them later. When she’s a little bit older, I’ll be teaching her 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 don’t understand until you have them too.
5) HAVING A LIFE-THREATENING ILLNESS MAKES 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.
And even though it isn’t always easy, I thrive with something multiple people have told me they’d rather die than live with. And yeah, I’m pretty damn proud of that. And that pride keeps me going.
I am a mother with a chronic illness, and I am stronger than I was without it.
Do you struggle with chronic illness? Did you feel it made motherhood harder? How did you cope? Let me know what you think in the comments!