Heather Gabel is a PWD, poetic prose writer, bar-tending therapist, and doctoral candidate at the University of Illinois in Chicago.
James Pennebaker is a social psychologist who has dedicated his career to studying the words we use. In his most recent book, The Secret Life of Pronouns, he examines the type and frequency of pronoun usage in our narrative and expressive writing, speeches, and more. Pronouns! Even the smallest words reveal things about us. Pennebaker's exploration of the fundamental connections between specific words we use and their repercussive psychological effects inspired me to take a closer look at the words we use in the big bad world of diabetes.
In the pocket of my left elbow bend lives a tattoo that says “diabetic.” Chances are, you know what that means: I am a person with diabetes (PWD), I have diabetes, and I am diabetic. To some, that last sentence may seem redundant and or repetitive.
To those who saw it as such, I invite you to join me as I examine and unpack the complexities that charge each phrase. I will then break down three words that individuals in the diabetes community seem to dislike the most: uncontrolled, non-adherent, and non-compliant. As you read, I ask you to consider how the words we use impact ourselves and others, and in particular, how they might impede motivation toward self-care.
Let’s assume that all of our feelings about the diabetes label lie on a spectrum. Some of us have never before felt offended by the term "diabetic" and use it regularly. Yet, some of us loathe the word so much that we correct others when they use it. Whether you feel effected by it or not, the word "diabetic" is loaded and charged because it assumes identity. That is to say, it takes the person out of the disease.
A person who has diabetes, on the other hand, is a person first. “Having diabetes” is troubling for some, however, because it implies possession and thus, control. The sentiment that one can control diabetes carries with it an entire new set of linguistic complications.
Now, a person with diabetes (PWD) creates an image of a person first, but does not specifically imply possession. This is my favorite label of all, and not only because it looks like a credential. I like PWD because it affords an externalization of the disease and also implies a relationship. Keep in mind that we all lie on a spectrum, and what works for some may not work for all.
Non-compliant, uncontrolled, and non-adherent are clinical terms that healthcare providers use to diagnosis us, explain us, and get paid. The problem with these terms, as you may so feel in your gut, is that they modify our actions as patients rather than the disease. Instead of calling diabetes names on the health playground, it feels like the doctors are calling us and our behaviors names.
What if our doctors helped us externalize diabetes and used descriptive words that did modify the disease? Rather than “uncontrolled diabetic,” what if on your lab reports and charts you read “unstable diabetes” or “erratic diabetes” or “temperamental diabetes”? Would you feel more comfortable talking to you doctor about your crummy disease if the negative modifier didn’t feel like a personal attack?
Paralympian Aimee Mullins gave a TED Talk on the opportunity of adversity. She opens by offering a thesaurus entry for the word “disabled” and proclaims boldly, “Our language isn’t allowing us to evolve into the reality that we all want.” She suggests that the words we use haven’t caught up with technology.
Now that we have advanced medical equipment like glucometers, continuous glucose monitors, insulin pumps, and data share devices (#wearenotwaiting), words like “non-compliant” are simply outdated. Your health results are rarely from a lack of trying and effort.
To you, the PWD, healthcare provider, or person who loves a PWD, I implore you to adopt the alternative words presented or invent your own. We cannot know the power of a change until we begin to make it.