T1D and Parental Guilt: A Child’s Reflection


I’m sure you’re familiar with the widely used phrase “as long as my baby is happy and healthy.” It’s used with the best intentions and hopes, but, if I’m being honest, I think it’s a driver of parental guilt.

I’m here to explore parental guilt from my shoes: the child for whom the parents felt guilt. Maybe by the end of this post you’ll agree with me, and maybe you won’t. Either way, it’s okay. I hope in writing this I can share a new perspective with you and that you’ll consider my words the next time you say or hear those familiar words: “as long as my baby is happy and healthy.”

Bringing a new human into this world is exciting, joyous and beautiful, but it can also can be terrifying, difficult and devastating. And in many circumstances these feelings occur long before labor and delivery, as parents fret and fear and each medical appointment during pregnancy brings potentially celebratory or troubling news. Many babies aren’t born 100 percent healthy. And even for those seemingly happy and healthy babies, it’s not always smooth sailing. Exhibit A: Me.

Fast-forward 17 years from infancy and you’ll find me, a high school senior without a care in the world. No broken bones, no learning deficits, no health concerns whatsoever. One emergency room visit and many doctors’ appointments later, and that seemingly “happy and healthy” 17-year-old me was diagnosed with T1D and Celiac Disease.

Now, almost eight years later, I think back to that time. I try to imagine it as my parent’s experienced it, and I commiserate with them. I truly believe as parents they had it harder than I did. Their child, who they thought was safe from the unknowns of medical hardship, was diagnosed with an incurable, chronic illness requiring around-the-clock care. Their child would now have to fight for health insurance coverage. Their child would now be at risk for a wide variety of potentially life-threatening conditions. They, as parents, had failed at bringing a “happy and healthy” child into the world. And I did not make it any easier on them, I’m sure, with my constant, light-hearted sarcasm, as I started referring to myself as “damaged goods” and sassy comments like, “What’s another needle when I stab myself 5-7 times a day as it is.”

I truly wish I could go back to that time and remind my parents that I was still me, that I was still “happy and healthy,” and that they did nothing wrong.

Although I missed my chance in that moment eight years ago, I try to assure them of those things today as I know in many ways they carry a heavier burden than I do. All those times they asked if I took my Lantus or if I packed extra supplies for my upcoming trip, to which I responded that I was an adult and I didn’t need their help, that I had to do this all by myself, that no one could help me — well, I know now that they were expressing their guilt while I did nothing to ease their burden. I was pushing them away when all they wanted to do was help, because they felt they had let me down as parents and failed to protect me. That guilt is something no parent should ever have to feel.

T1D is awful. It’s demoralizing, exhausting, painful and I wouldn’t wish it upon anyone. But a person with T1D is a contradiction to all of those things. Each one is amazing, strong, courageous, special, and perfect. Having T1D has taught me so much. No words could even come close to describing the ways in which I have grown, and for that I am grateful.

To my parents, I am thankful. I am thankful they took a chance at making a “happy and healthy” baby and got me: a human. Not perfect by any definition. Not always happy. Not always successful. Not a lot of things. But always me, and for that I owe them everything.

WRITTEN BY Rachel Fenske, POSTED 06/05/17, UPDATED 09/05/19

Rachel is a Wisconsinite — Go Pack Go! — currently in her third year of graduate school, working towards her PhD in Biochemical and Molecular Nutrition at the University of Wisconsin Madison — Go Badgers! She was diagnosed with T1D in 2009 and Celiac Disease in 2010, which has fueled her interest in the intersection of T1D and nutrition. Rachel is currently training for her first half-marathon and would love to hear any tips or tricks you may have to best manage T1D over 13.1 miles!