How I Care for “Non-Compliant” Kids with Diabetes (After Being One Myself!)

I became a Certified Diabetes Care and Education Specialist because I have type 1 diabetes. I’ve had it now for 54 years! And I’ve learned that when I care for people who have diabetes, I take better care of myself. I love taking care of kids with diabetes especially, because I’ve been there.

My “Non-Compliant” Youth

At 6 years old, I learned that if I told my mom that I checked my urine (yes urine!) and that my levels were fine, she believed me. (I wasn’t checking). She was so focused on caring for my older brother who had leukemia, she just needed something to be okay. I made it okay. And I made it okay for me because it meant I didn’t have to take more insulin. I thought that was okay except that I was thirsty and peeing a lot and didn’t feel good, but I didn’t let her know. And somehow I managed to get by until my doctor took notice eight years later. So I understand the idea of non-compliance. I just don’t like the term. It puts the blame on the family and the child. Is it really them not doing what they are supposed to do because they don’t want to? Usually not.

I’ve seen the label “non-compliant” in my own health records, and that term makes me cringe. To me it says, “You’re a failure, you’re not doing what you’re supposed to do, you’re not trying”.  But sometimes kids ARE trying, and their families are doing the best they can.

Moving Away from the Term “Non-Compliant”

Let’s turn the notion of non-compliance around. Maybe non-compliance is not the fault of the family but that of the medical team—the doctor, the nurse educator, the dietician, the social worker—and society that together are labeling the child or family non-compliant without understanding their personal situation. We are not catching our children and our families before they fall. Not all patients with diabetes are alike. We all have our own stories. Not every child has the support they need from their families. Parents or caregivers may not have what they need to successfully care for the child, whether it’s illiteracy or low education level, the ability to troubleshoot, coping skills, or the ability to manage the stresses of daily survival such as having enough money to pay for rent, food, medical supplies, insulin, or finding someone who can care for their child so they can work. And the emotional turmoil that diabetes can cause in our kids is huge—wanting to be “normal”. Can any one entity be blamed for what we call non-compliance? If there is a better term I would recommend using it. Perhaps  “partial adherence” is better, meaning the patient or their caregivers are having a hard time doing everything we want them to, but they may be doing some of it.

A Better Way to Help T1D Kids and Their Families Thrive

As a healthcare team, we need to ask what the family’s perception of diabetes is and what is important to them. How can we support them? What are they having the most difficulty with? Assess where the problem spots are, and see how we can help the patient, and everyone who is involved in that child’s life cope, communicate, and learn techniques that will help them manage diabetes better. And, sometimes, when it becomes clear that the family or patient is not willing or able to adhere to the full scope of diabetes management, help them set small, safe, attainable goals that will move them in the direction of improved management. And mental health support is SO important and should be provided from diagnosis on, as part of the diabetes package.

Diabetes is really hard. It’s 24 hours a day, day in and day out. There is no vacation from it. It is a constant challenge. Sometimes what you’re doing works. But then life gets in the way. Other stressors can play a role—emotional, financial, or “other”. There are multiple “other” factors. Is it the weather? Is it some other hormone in our bodies wreaking havoc or being kind? Everything can be perfect…your carb counting, your insulin calculations, your exercise routine, your stress management – and still blood sugars can be wacky. This is generally when my “screw it” mentality strikes and I sabotage myself, giving up on tight control, eating what I want, and not sticking to a routine I know works for me.

At the End of the Day, We’re All in This Together

I joke (and sometimes lament) that there are days I can just look at food and it makes my blood sugar rise. And then there are the days I can eat almost anything and it feels like I am cured. I like those “cured” days. It gives me a brief moment of reprieve. The emotional impact of diabetes can be daunting.

I share these experiences with my patients and their families so THEY understand they are not alone in this journey. Because this is what diabetes is—a journey, full of injections and finger pokes, messy emotions, moments when we feel successful, and other times when we don’t. We’re waiting for the day when diabetes technology is readily available for all people with diabetes. It truly takes a village to raise a child (and an adult). It takes even more to raise a child with diabetes. I tell all my kids if I had a magic wand to make their diabetes go away I would use it first on myself and then on them. A little bit of empathetic humor goes a long way. And a little bit of empathy for our patients and their families goes a long way too.