Recently and over the years, there have been very intelligent and thoughtful written reactions to the way that people with diabetes are clinically labeled as uncontrolled, non compliant and non adherent.
I wanted to share my thoughts today.
First, I think we need to define what “control” means in regards to diabetes and blood sugars.
Clinically speaking, my doctor would label me “in control” or “compliant”. Does this mean I always manage my blood sugars, can always predict them or often have swings that are outside of my ability to manage? No, but it means that my daily readings and A1c are generally considered the best possible for someone without the ability to make their own insulin.
Whenever an additional factor is present like gastroparesis, poverty or depression then we ourselves should keep those in mind so that if we do somehow come across the label “non compliant” we remind ourselves that we have our own legitimate reasons for blood sugar instability. While it is nice if others support us, especially for those without the self-confidence to prop themselves up emotionally, I think we should strive to be responsible for our own feelings of guilt. I understand this is difficult depending on who you are, what you have been through, how you were raised to think and so on.
I no longer feel guilty about my blood sugar management when it is poor. I know diabetes is hard and I work to improve it while patting myself on the back for attempting the impossible. This helps me tremendously because instead of sinking at the sound and judgment of a word, I focus more on the meaning of it and what I need to do. I’m not always very good at this but I try to focus on solutions instead of my feelings. I get that this can be very hard. I for one, always initially react emotionally to something and those feelings often overwhelm me when trying to think clearly. Still, I find that it helps to stay rational and try to keep emotions out of the troubleshooting process.
Better results regarding my diabetes are going to help me feel better so they are my lighthouse.
I can certainly empathize with wanting clinical terms to go away. I’ve always advocated that doctors keep their technical in-house terms to themselves because they do not translate to people and their feelings. The truth is that outcomes are negatively influenced when people are emotionally upset. Doctors should recognize that there are many good reasons why someone isn’t managing their blood sugars as well as they’d like and help a person make improvements wherever possible without using a phrase that doesn’t take their serious effort into account. In-house, fine, I’m “controlled” or “uncontrolled”, whatever. Sitting with my doctor in an office, I’m “doing my best” and then we proceed to improve what needs improving.
If a healthcare provider or institution doesn’t want to change their ways of describing me on paper, I’m not going under for it, not going to cry, be hurt, feel inadequate. Not in the least bit. And I hope you don’t either. You are doing the job of an organ! If you are alive you already have my genuine congratulations. Maybe in this context we can all think of control as a clinical term to describe best outcome treatment goals being met? After all, our doctors and clinicians need a way to describe us for data compilation and such.
In the meantime I suggest not tying any of your value, self worth or personal efforts to language. We have the power to start solving this problem for ourselves and our children by not being victims of words if we don’t want to be.