When you hear the term “noncompliant,” what’s the first thing that pops into your head?
Every so often, I find myself observing a conversation or reading a blog post denouncing the term “noncompliant diabetic.” And I get it. Most of the people who say they’ve been called noncompliant by their healthcare professional aren’t actually noncompliant at all. Struggling, maybe, but aren’t we all?
Because “noncompliant” is a label stamped on nearly everyone who doesn’t meet the Gold Standard of diabetes management, it’s easy to see why it’s such a reviled word. If the very best of us aren’t good enough then clearly the word is just used by mean, spiteful healthcare professionals with their head stuck so far up their asses they wouldn’t know an insulin pump failure if it smacked them in the face.
But the thing is, noncompliant diabetics are real. And we aren’t taking care of them.
Before I explain what I think noncompliance is, I’m going to tell you what it isn’t.
Noncompliance is not a glucose test reading. Noncompliance is not your last A1C result. Noncompliance is not your weight or your lab values.
Noncompliance is not a result, it is an action. To comply is a verb. So what are you complying with? Well, I think broadly you can think of compliance as doing what you need to do to manage your diabetes in healthy way. That doesn’t mean never having spikes in blood sugar, or sugary treats, or always pre-bolusing or testing 15 times a day. It doesn’t mean perfection. But it means that more often than not, you’re testing your blood sugar, taking your insulin and eating food that contributes to better health. That you are doing what you know to be in your best interest, not necessarily what your doctor says, but what you know you need to do to be healthy and live a long, productive life.
So what is noncompliance? In short, the lack of trying. The lack of effort or interest. It’s know what you need to do and frankly, blowing it off because you just don’t feel like it anymore.
I’ve known noncompliant diabetics. Hell, I’ve been noncompliant.
I knew a guy when I first moved to New Jersey, he was a guy I worked with, who was noncompliant. He didn’t test his blood sugars. Like, ever. I was dumbfounded. But he said, “I can feel my highs and lows, so I’m just not going to.” He wasn’t completely noncompliant because he still took insulin, but he was noncompliant with finger sticks.
I met a teen a few weeks ago who doesn’t carb count or take the amount of insulin she’s supposed to. She takes insulin, but spends more time just reacting to high blood sugars. She knows what she should do, but she doesn’t do it.
Now, the problem with this is that a lot of people just stop there. Doctors think they can shame this guy or this teen into behaving.
“Do you want to go blind / lose a limb / have a heart attack?!?!”
C’mon, you guys. No. No, they don’t. You’re missing the point.
Noncompliance isn’t the main issue. It’s real, and it’s a problem we should address, but it isn’t the end of the road. It’s a symptom of a bigger problem. It could be a symptom of depression, burnout, denial, anxiety. It could even be a lack of education. People with diabulimia are noncompliant with their insulin but you wouldn’t just say, “Shape up or else!”
It’s like telling someone who is crying because they’re depressed that they should just “Stop crying” because being happy is better for them. No shit, Sherlock.
It’s a serious mental health issue that we’re talking about. It needs to be addressed. We can’t simply say “There’s no such thing as noncompliant diabetics” because it completely discounts everyone who is and needs help.
It’s real and it’s a problem for people who really are struggling with this. It’s not everyone. And you don’t have to be noncompliant to be burnt out or depressed (although it’s more common).
I don’t want noncompliance to be a joke. I want us to take it seriously. I want it to have a clear meaning for people so we can use it to help identify people who are struggling.