D-Blog Week: Words

Quick note: This week (May 16-20, 2016), GraceMark Musings is participating in Diabetes Blog Week, adding our voice to the chorus of diabetes bloggers, caregivers, and friends of the DOC (diabetes online community) who are uniting to share their unique reflections on certain topics prevalent in life with diabetes. Thank you to Karen Graffeo at Bitter-Sweet for creating this opportunity--congratulations on the 7th year of D-Blog Week!

"Sticks and stones may break my bones, but words will never hurt me."

As I type that, I can almost hear the sing-songy voice of my kindergarden peers echoing the age-old saying in a high-pitched chorus so many years ago. It's a a nice sentiment, and surely simple enough to build up children's resilience at a time when life is black/white and not the multitude shades of gray it fades into as we get older. 

Thinking about words used by others (friends, family, healthcare providers, internet trolls, etc.) in relation to diabetes makes the whole "sticks-and-stones" thing a little more complicated. The reality is this: there are two things about diabetes that make word choice such a touchy topic for so many of us. The first: the stigma, rampant misinformation, and lack of education surrounding diabetes creates an environment primed for negative language and damaging stereotypes and/or jokes that have further reaching implications than the perpetrator likely realizes. The second: just as YDMV (your diabetes may vary), your level of sensitivity to language or word choice in communicating about diabetes may also vary. I would say to my clients that, as a general rule, modeling positive language surrounding diabetes is the best choice, and what constitutes that positive language is up to the discretion of the patient. That's going to look and sound different for every person and family living with diabetes. This being said, today's prompt asks about my personal feelings about diabetes communication, so here are my personal feelings on a few polarizing phrases.


Surprising to some, discussion of patient "compliance" or "non-compliance" is the top diabetes-related word choice issue that irks me to no end (but still, don't even get me started on the use of "control" as a verbal or written indicator of diabetes health). 

In my coach training coursework, I had the opportunity to address my feelings on the use of "compliant/non-compliant" and suggest the substitution of "adherent/non-adherent" instead when it came up in a case study. Here is an abridged version of my comments from my paper: 

The word “compliant” is a loaded term for patients with chronic illness. The word “adherent” is one that achieves the goals that “compliant” sets out to achieve, while approaching the patient-health care provider relationship as a partnership, not as patriarchal.

The definition of the word “compliant”: inclined to agree with others or obey rules, especially to an excessive degree; acquiescent.

The definition of the word “adherent”: someone who supports a particular party, person, or set of ideas.

Supporting a set of ideas (adherence) that will help bring about success in achieving wellness goals in a collaborative goal-setting environment sounds much more encouraging and effective than being inclined to obey rules to an excessive degree or be acquiescent. I am aware that the use of “compliant” to describe patients, particularly those living with diabetes, has been in use in the medical community for quite some time.{...}The use of “compliant” or “non-compliant” does not evoke the image of an empowered patient in the way that we have been trained to consider. Some powerful patient perspectives: Karen Hoffman Anderson, living with type 1 diabetes, is quoted in an article by patient advocate and writer Kerri Sparling,

“Noncompliant’ makes me think of toddlers refusing to eat their vegetables. At best the term is demoralizing and infantilizing, and at worst it implies deliberate sabotage of your self-care. I loathe, loathe, loathe the word.”

Caroline Sheehan, a medical professional living with type 1 diabetes, presents her argument for the use of “adherent” versus “compliant”: “’Compliant’ feels like I am following commands by a medical professional, as though I am in lockstep in a one-way relationship. "Adherent" feels like following their suggestions, a two-way relationship in which I stick to or stray from recommendations, not rules. Working in the medical field, I try to say ‘adherent/non-adherent’ as much as possible, and I notice more professionals saying it too. However, ‘compliance’ in the medical world is very common across several domains, not just diabetes. More education and listening to patients' feedback are needed.” 

Diabetic Diet

It would be generous to say that the "nutrition training" I received in the hospital upon my diagnosis was training at all. Being told by a hospital RD that my diet was going to turn my type 1 diabetes around was not only laughably inaccurate (even if this were factual [which we know it is not], my diet preceding my diagnosis was quite healthy anyways), but also incredibly unhelpful. When people ask me, mid-bite, "Can you eat that?", or, even worse, declare publicly that I cannot or that my choice to eat it makes me a "bad diabetic" *gag* , it takes all of the patience in my body and grace in my soul to breathe slowly through my nose and re-educate them on what they know about diabetes and explain my autonomy as an adult human being.

This feeds into what I consider to be the archaic notion of the diabetic diet. We should all be eating whole foods, minimally processed, with large servings of plants, protein, and fiber, complex carbohydrates, and the occasional treat, but just like someone who has a functioning pancreas, I have days where chocolate chip cookies are going to be a major food group. I take the insulin I need to eat the cookies and *GASP* I survive to tell the tale.

More abridged commentary from a paper I wrote during my training, on the topic of the "diabetic diet":

There is no such thing as a “diabetic diet”. The use of the term “diabetic diet” is outdated and perpetuates the false, and dangerous, idea that a) people with diabetes cannot be trusted to make healthful food choices [particularly] after receiving guidance from a RD CDE (MNT-medical nutritional therapy) based on the same suggested meal plan for someone without diabetes. This is harmful because of the social stigma it puts into place, leading to hurtful exclusion.

Part b) it is dangerous for people to assume that a diabetic diet means no sugar can be consumed, as fast-acting carbohydrates such as juice, candy, etc. are life-saving in a situation of hypoglycemia; a situation in which someone thinks they are doing someone a favor when a PWD requests sugar in the event of low blood glucose and then withholds it because “diabetics can’t eat sugar” is critically dangerous and could lead to death. 

There isn't anything I cannot eat because I have T1D; just things I might choose to avoid because they make my personalized management of diabetes more difficult. I, for one, retired the use of this phrase from my vocabulary the day I was discharged from the hospital at diagnosis, and I invite you to join me going forward, if this resonates with you. 

And for today, I'll conclude on the big doozy of diabetes word choice debates:

Diabetic vs. Person with diabetes

Ask anyone who lives with diabetes whether they prefer to be called/call themselves diabetic/a diabetic or a person with diabetes (PWD), and you are likely to get an earful one way or another. I've given this one a lot of thought. Someone I love and respect who has been very influential in my life post-diagnosis in learning to live with type 1 expressed to me that she strongly identifies as a PERSON with diabetes. In the way that she wouldn't want to be defined by her diabetes, she doesn't want the descriptor word "diabetic" to be used for her. I totally get that. When she first shared this with me, I fiercely agreed, educating people around me constantly about the difference between being called a diabetic vs. person with diabetes.

As I have grown more comfortable in my own identity post-diagnosis, I realized sometimes it is simply more expedient to say that I'm diabetic or a type one diabetic than saying I am a person with diabetes. It feels uncomfortable to me if someone calls me or someone else "a" diabetic. I don't much care for it, but sometimes it just happens. If someone refers to me with the descriptor "diabetic", that bothers me less. I'm honestly not sure what the distinction is, but that's just how it feels to me. I'll never be offended by someone calling me a person with diabetes, but I'll also understand if a person without diabetes never thinks to call me a person with diabetes because generally, only people who live with diabetes give these word choices so much thought. 

Thinking carefully about the words we choose is something we should all do, regardless of the topic. However, I cannot control someone else's word choice, only the amount of power I give to the meaning of their use of those words. Bringing it full circle, I'll say something like "Sticks and stones may break my bones; your choice of words may be eye-roll inducing but I'm just going to ignore them if they are and move on because I don't have the time or energy to dwell on it." Not quite as catchy, but I suppose it gets the point across.