What does adherence even mean when it comes to diabetes? Even when I do everything “correctly” that I am supposed to do to manage my blood sugars, the results are inconsistent. The number of variables affecting glucose levels is immeasurable, and we learn about new ones daily. How could someone ever be labeled as “adherent” given these circumstances?
Am I not allowed to be human? To make mistakes? To forget things sometimes? This normal human behavior is common across all areas of life, and diabetes is no exception. So why am I labeled “non-adherent,” which is just a watered-down way of saying “non-compliant”? Both labels leave me feeling defeated, judged, and angry. We often already judge ourselves for the daily challenges with diabetes that we consider our fault – we don’t need other people’s judgment weighing us down further.
This week, I listened to psychologists talk about how they want to help address “non-adherence” and that they feel patients don’t want to listen to their advice. I asked why they use the terminology and concept of adherence and non-adherence, and there was not much of an answer. Even so, I suggest that it may be more beneficial to focus on the barriers to diabetes management behaviors versus the time spent not achieving the management goals.
Here are some experiences I have had as a PWD that someone may consider as me being “non-adherent”:
- Forgetting to bolus for a meal (Whoops! Probably happens once every couple of months for me. We all do it – we’re human.)
- Overeating when low – especially overnight (Have you ever even been low if you haven’t eaten way more than the prescribed 15 grams, then wait 15 minutes? I do not know a single person with diabetes who has not done this mannnny times.)
- Not checking my blood sugar before participating in an activity (When my CGM isn’t working nowadays, or when I didn’t have a meter with me back in the pre-CGM days.)
- Wearing a pump that my healthcare provider didn’t want me to wear (I’ve done this several times and am about to do it again…my diabetes, my body, my choice.)
- Accidentally running out of insulin when I’m out or at work (Do you remember to check your pump every time you walk out the door? Probably not, if you’re honest.)
- Eating something with a lot of carbohydrates when my blood sugar is high (Holidays, celebrations, and sometimes you feel like pretending you don’t have to think about diabetes every time you want to eat something.)
- Wearing devices in “non-approved” locations on my body (Again, my diabetes, my body, my choice.)
This is by no means a comprehensive list. I am constantly trying to pivot to meet the demands of diabetes. As I write this, my blood sugar is 330 mg/dL, which it shouldn’t be. I recently ate something with carbs, fat, and protein and took a bolus 15 minutes ahead of time, but here I am. Does this make me non-adherent? Or was it simply that I did not account for the rapid absorption of the carbs? Is my infusion set not working as well as expected? Am I overly stressed? Maybe all of the above.
No one wants to hear how they fail at something you cannot win. If it were something easily achievable, it may be different. But diabetes is like a casino game. You can try and try, but most of the time, the house wins. So, if you don’t live with diabetes, or even if you do, please stop considering the entire concept of adherence and compliance. Judge yourself and others less because we really don’t even fully understand this lovely condition. Choose kindness and compassion – the world needs more of both.
If you are a healthcare provider looking to help PWD or their families, here is a language guideline document as a resource.
Written and clinically reviewed by Marissa Town, RN, BSN, CDCES
