Jewels Doskicz is a registered nurse, freelance writer, patient advocate, health coach, and long-distance cyclist. Jewels is the moderator of Diabetic Connect’s weekly #DCDE Twitter chat, and she and her daughter both live healthfully with type 1 diabetes.
Do words really matter?
They undoubtedly do—when it comes to diabetes and most other things, thoughtful consideration of what’s being said is kindly appreciated.
That's why when we hear “non-compliant” and then see the accompanying numbers, the efforts we put forth feel under-appreciated, especially with a disease that makes you accustomed to being judged by numbers.
The responsibility of diabetes control ultimately lies with you, but a trick of the trade may empower you.
What did you say?
A recent study on improving disease management in Diabetes Journals explored the concepts of compliance versus adherence. (In case the word “compliant” doesn’t irk you, you should know it bothers many other people living with diabetes—and I fall in that latter camp as well.) Compliance measures how a person’s behavior coincides with medical advice, whereas adherence focuses on a collaborative, active involvement between you and your healthcare provider in creating a treatment and course of action.
Diabetes Journals tells us that “the concept of non-compliance not only assumes a negative attitude toward patients, but also places patients in a passive, unequal role in relationships to their care providers.”
Can I suggest that “compliance” be eliminated from the diabetes dictionary?
It’s important for healthcare providers to understand that some days it seems like the direction of the wind, the color of the sky, or the percentage of humidity are affecting diabetes control; it can truly be that vague.
If I could only measure the growth hormones pulsing through my growing child’s body to determine if that’s why insulin is having the effect of water today or if its test anxiety, the rush to the waiting school bus, a snarky classmate, or the volleyball game after school. The problem with diabetes is that we manage it with postulations and presumptions; it’s not logical mathematics.
No one wants better control of their diabetes than the person living with it. When frustrations set in, it’s exhausting. But holding a white flag in surrender isn’t optional—diabetes isn’t going anywhere.
Creating a relationship with your doctor that promotes adherence instead of compliance has its payoffs. According to Diabetes Journals, “It has been generally acknowledged for years that non-adherence rates for chronic illness regimens and for lifestyle changes are [equivalent to] 50 percent.”
Our system is set up for drive-by medicine: treat and move on. Chronic disease requires much more time to listen, to analyze collected data, to identify patterns, and to make recommendations.
Diabetes is unique in that management happens at home; the provider is at the mercy of you and your choices. Whether you are mindful of recommendations or not, results may not fall within range at three-month checks.
This is where label slapping happens and you may hear “non-compliant” thrown around.
In order for great things to happen, a management plan must be tailored to fit your individual needs—otherwise known as “collaborative care.” There’s simply not a one-size-fits-all model when it comes to managing diabetes.