Words Matter: The Language of Diabetes

Words Have Power Concept

The language people use to discuss and write about diabetes and the people who live with it has long been questioned. Becoming aware of and changing the language and messaging related to health is not unique to diabetes. In fact, several other disease-related organizations are discussing and changing language as well.

Today is a big day for people who have diabetes. Today two major diabetes organizations in the United States published a paper on the use of language in diabetes care and education. This is a significant step toward improving the way we talk to and about people with diabetes. Language really does matter and we are making progress.

Thank you, American Association of Diabetes Educators and American Diabetes Association, for caring enough about people with diabetes to support this work and publish this paper.

Here are the paper and resources. And here. Enjoy!

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Engagement Stories

Gold wedding ringsI went through a phase where I was fascinated by couples’ engagement stories. I had several friends and family members who had especially cute or romantic ones. Now engagement has a different twist for me. It still means a connection or a commitment, of sorts. Instead of two people in a relationship; however, I now think of engagement as connecting with diabetes management – a commitment to take care of ourselves.

These days we often hear the phrase “patient engagement.” This, too, has different meanings. Health administrators may think of it as engaging with the system: making appointments or looking up lab results online, for instance. I think of patient engagement as healthy relationships between patients and providers. And between patients and their health.

When did you get engaged in your diabetes management? When did you take an interest and start learning and doing more? Maybe it hasn’t happened yet…

For me it was in 1994 when I started getting engaged. It became solidified when I started working in diabetes. Being a role model really helped me take my diabetes management seriously. Once taking care of myself became a habit I stopped thinking about it and just did it.

While there are certainly moments when I’m less engaged, in general, I’m pretty married to my health. My health is like my life partner: I pay attention to it (most of the time), I take care of it, and I’m aware of it. Because I want my health to continue to be a positive thing in my life, I put in the effort required to maintain it. Being engaged in my health definitely takes work; so far I’d say it’s worth it.

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Health Alert

smoking-quiz-promoRemember cigarettes? My kids tell me no one smokes anymore (they vape, etc.). Yet, inactivity has more recently been equated with smoking in terms of the health effects.

If sitting is the new smoking, then I’m a chain smoker. I sit all day in front of a computer. I love my work – it’s fulfilling, challenging, stimulating. But it’s not active.

I wear a Fitbit, which tells me from time to time to get up and do some steps. I mostly ignore those notices because I’m in the middle of something. I do try to hit 10,000 steps a day by exercising each morning and walking the dog twice a day, but mostly I sit.

I have learned the hard way the toll sitting takes on a middle-aged body. My plan is to get in the habit of moving every hour during my work day. I already pace when I’m on (most) phone calls. Another idea is a treadmill or standing desk, but I haven’t made it to that point yet.

At any rate, I often think about quitting smoking. And by quitting smoking I mean sitting less and moving more.

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The eXercise Factor

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Yes, that’s my treadmill in the garage!!

Exercise means different things to different people:

  • dreaded
  • addictive
  • fun
  • boring
  • enjoyable
  • tedious
  • social

For those of us with diabetes, exercise is an important part of managing blood glucose. It’s not easy and it’s not always consistent. Whether you ride competitively for Team Novo Nordisk or go for walks around your neighborhood, exercise can be challenging to incorporate into your daily diabetes routine.

Some people avoid exercise altogether because they were never taught how to make it work with diabetes, or because they are afraid of what might happen, or they’ve had a bad experience.

I have found, after years of practice, the following works best for me:

  1. exercise at about the same time every day (I like morning)
  2. exercise after eating (and after having taken insulin for the meal)
  3. take less insulin before aerobic (cardio) workouts
  4. take more insulin before anaerobic (strength-training) workouts
  5. carry blood glucose monitoring and low treatment supplies with me when working out away from home
  6. eat extra carb before exercising if it’s an unplanned activity and insulin is already on board

From time to time I see recommendations for exercise and diabetes that say to eat more carbohydrate, take less insulin, or exercise before taking insulin. This is simply not what works for me. I have practiced enough to know that if I exercise before taking insulin I will go high and if I take less insulin before a strength-training workout I will go high.

The bottom line is that exercise is good and each of us has to figure out what works. Recommendations are certainly a wonderful place to start. If they work – fantastic! If not, we have to do some careful experimenting until we find the solution. Even then, there will be times when what usually works doesn’t work. That’s life with diabetes!

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Serving, not pleasing

0523-People-pleaser“…more often than not, trying to please everyone a little is a great way to please most people not at all.” Seth Godin

I’ve been told that serving is more important than pleasing, and I wholeheartedly agree. Last week I tweeted about the phrase “brittle diabetics,” which I find unhelpful and in some situations hurtful. The scenario in which I heard it used was basically a replacement for “non-compliant” and “uncontrolled” “diabetics.”

I don’t use or condone the use of any of these words because they are judgments and labels, and they can impart shame, blame, guilt, and negative feelings. Most important, they just don’t help anyone.

At first, I was getting likes and retweets. But when my tweet led to a heated debate about the use of the term, “brittle,” I started to feel bad. I wasn’t pleasing everyone. Then I realized that my work on this language movement is never going to please everyone. No matter how hard I try to convince people that I’m not the word police and that I don’t judge, there is still this underlying resistance about changing language.

All I’m asking is for people to think. Stop for just a moment and consider the damage that words can do. Think about messages and what they impart. Think about tone and how it could be interpreted. Same for body language. If it hurts one person, it hurts. What better way to serve than to use language that empowers everyone?

I choose serving over pleasing.

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John Denver and Diabetes

0EMEXvwListening to John Denver while walking on the treadmill, I really heard the words to Rocky Mountain High, particularly the very first line:

He was born in the summer of his 27th year; coming home to a place he’d never been before.

Since just about everything reminds me in some way of diabetes, I started thinking about people who are diagnosed with diabetes and how different that experience would be at different ages. When younger children are diagnosed with diabetes, it really becomes their parents’ disease, at least for a while. It’s also easy to forget life before diabetes when you were diagnosed at a young age.

But what about young adults and adults? They have actually established a life and a lifestyle. They know what they like and what they’re used to doing. I sometimes wonder if there’s a better or even best time to get diagnosed, and I always say no, there isn’t.

The day someone finds out they have diabetes their life is changed forever. Even if they don’t have to make all that many changes, say, eating or activity-wise. Checking blood glucose, taking medications, and simply being aware of the effect every morsel of food has on our bodies is life-changing. Of course, that’s not even mentioning health care provider visits, cost, worry, etc.

John Denver was simply singing about finding a new place – Colorado – which changed his life forever. In many ways, having diabetes is like climbing the Rocky Mountains. And we certainly can experience that Rocky Mountain High (blood glucose), which I’m guessing is not quite as fun as the one JD was referring to.

We can take a lesson from that quintessential singer-man, though, and revel in every moment of this life we have. Manage the highs and lows and come out on top!

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Autism Speaks in Person-Centered Language

photoDid you see 60 Minutes last night? They did a very informative segment on autism, in which they used only person-centered language. I heard only kids with autism, people with autism, kids without autism, and when someone has autism. I never once heard the word autistic. The autism community has figured out the importance of putting the person first and they are consistent with using person-first language.

I’m aware of language bcause it’s my passion and my work. What is so impressive about the use of person-first language in autism is that everyone from parents to news reporters to Sesame Street characters is using it. Clearly, it’s catching on.

So why are we so much slower to adopt this in diabetes? There could certainly be many reasons, and I don’t pretend to know the answer. Regardless, health care professionals and people living with diabetes alike can help with the language movement in diabetes. Not only is diabetic not person-centered, it’s not helpful. It makes people think of all the stereotypes linked to diabetes, and doesn’t build on people’s strengths.

Just as children with autism are no longer likely to know the effects of being called autistic, I hope that one day, when someone is diagnosed with diabetes, they will never hear the word diabetic.

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Help Mindy Get Her Book Published

Mindy Bartleson is sharing this guest blog today. Mindy is 24 years old and has had type 1 diabetes since she was seven. She lives in Boston, works and volunteers in diabetes and is an avid diabetes camper! Mindy started a crowd funder, yesterday, to get her book on coming of age with chronic illness and mental health published. Read on!

They say the scariest thing is right before you start. Well, I’d hate to disagree with the statement, but for me… the scariest thing has always been asking for help and now I’m adding it’s also scary to admit something (sometimes big) out loud.

That’s what I’m doing.

You see, two years ago I started the journey of writing a book. I’m pursuing self-publishing. It’s about coming of age with chronic illness and mental health. My goal was to finish all of the content before I turned 24 so rose-colored glasses wouldn’t impact all of my experiences, and I was able to meet this goal last year. I’ve focused on the fact that yes these things can suck, but it doesn’t mean you can’t do it. I want to balance the positive with the negative of life experiences with honesty.

I’ve always wanted to be an author, but to be perfectly honest, I never saw myself writing this type of book. I never thought I’d write about growing up with type 1 diabetes, PCOS, endometriosis, ADHD, OCD, anxiety, loss, and a few other things I’ve experienced in 24 years, but I have!

Mindy is self-publishing an honest book about growing up with chronic illness and mental health. She wrote the content before rose colored glasses impacted her experiences too much. To help get this book published, you can visit the crowdfunding page to learn more, back her project, and help spread the word. You can also follow Mindy on Instagram, Twitter, Facebook, and her blog “There’s More to the Story”.

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Back to school…with diabetes

Forty-two years ago I went to second grade with something new. Not a new outfit or a new backpack, but something I would wear and carry with me for life…diabetes. I was seven years old and had been diagnosed with type 1 diabetes at the beginning of the summer after first grade. I was very fortunate that my parents, teachers, and friends helped me integrate diabetes into my second-grade life (and beyond). While caring about and for me, no one made it a big deal, and I was able to get on with all the things 7-year-olds would rather focus on.

The one downside I do recall is having to eat my snacks in the principal’s office. He’d joke with me while I sat eating my Nilla Wafers, or whatever my snack happened to be. And I really hated having to go to his office every day. After that first year I ate my snacks in class and it was never an issue again.

Of course, these days, diabetes management involves much more intervention – blood glucose monitoring, technology devices, parents “sharing” data, school nurses “sharing” data, and so on. As my own kids prepare to head back to school tomorrow, I’m thinking about all the kids out there who will be taking diabetes with them.

Whether it’s the first day of school with diabetes or it’s old hat, I hope everyone has their best year yet. I hope diabetes is just one small part of who these kids are and who they become. I hope they get to live life first and fit diabetes into it. And I hope they don’t end up in the principal’s office!

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Different Problems, Same Goal

Last Sunday at #AADE17, I had the honor to be part of a presentation on the language of diabetes. Three of us, who are authors on the upcoming joint paper on language use in diabetes care and education, presented to a packed room plus an overflow room. I mention this because it is evidence that people care, or at least are curious about, the impact our messages have.

(And it turns out that the way we talk to and about people with diabetes does matter.)

A colleague told me later that as she was leaving the room, two attendees were walking close to her and chatting about the presentation. One of them said, “they obviously don’t deal with real problems in diabetes.” This immediately reminded me of people who don’t think someone is a nurse unless she/he works in a hospital at the bedside.

Diabetes educators provide valuable services in all sorts of locations and positions. I teach current and future diabetes educators (and see patients part-time), my colleague is a clinical psychologist working solely with people who have diabetes, and my other colleague leads programs for diabetes educators all over the world. We each address real problems of diabetes every day. They may not be the same problems those particular conference attendees see or deal with, but they are very real problems for the people we see.

Regardless of all that, we are all working toward the same goal: providing high quality care and education to people with diabetes, so they can have the best possible health outcomes and live full lives. We know that language is a problem that all people with diabetes deal with, and each of us can do something about it.

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