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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All Patients Are Liars

200_s“All patients are liars until proven otherwise.” Meredith Grey

Wow. Can you even imagine how my blood boiled when I heard that quote? Yes, I realize it was said by an imaginary character on a TV show, but it still made me a little crazy. It reminded me of all the things we hear about people with diabetes: non-compliant, non-adherent, lazy, don’t care, in denial, and so on. Oh boy does that stuff make my head spin.

The thing is, some people with diabetes do lie. They sometimes make up numbers, or give the wrong weight, or say they quit smoking (when they didn’t), or that they exercise regularly (when they don’t). What??

Actually, there may be a perfectly good reason for this.

I recommend stopping for a minute the next time we suspect someone isn’t telling the truth. I recommend stopping and thinking about why they might not tell the truth. What’s really going on? Were they shamed into hiding the truth? Are they afraid of how their provider will respond if they tell the truth? Do they feel it’s safer to give the “right” answers? Do they lack trust in the health care professionals they see?

I would suggest that what’s really going on is much more important than the “lie” itself. Most likely we can approach people in a way that establishes trust, which in turn gives people space to open up and communicate honestly. It can even improve care and outcomes.

As diabetes professionals, I hope we can listen to and accept anything a patient has to say.

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Time in Range

Two weeks ago I had the honor of taking part in the Glycemic Outcomes Beyond A1C meeting in DC. There were many smart, well-informed diabetes professionals in the room and it was fascinating to hear their thoughts on this important topic. It was abundantly clear that CGM is an important part of diabetes management and it would make sense to use it in diabetes research across the board. It was also clear that consensus has been reached regarding CGM metrics and now it’s time to get them published and into practice.

I really like the idea of CGM being the next EKG. How cool would it be for clinicians, researchers and patients alike to understand the language of CGM and the numbers it produces and then use it for improved outcomes?

One thing that stood out to me was a comment about focusing on “time out of range” instead of “time in range” (blood glucose between 70 and 180). My heart sank when I heard that. Why would we ever focus on something negative when we have something positive to look at? I thought, “wow, that takes us back to the dark ages.” Focusing on time out of range is like marking highs and lows in RED and only talking about them.

What about focusing on strengths (see last week’s blog post) and what is working, and then figuring out how to duplicate that and make it happen more of the time? What about asking, “what did you do here” when looking at in-range numbers, rather than “what did you do wrong” when looking at highs or lows?

I think of diabetes management as closing the gap – spending as much time in range as possible. While I’m ok with using blood glucose data to make changes,  I don’t agree with focusing on time out of range.

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Strength

“You never know how strong you are until being strong is your only choice.”

Managing diabetes every day takes strength. It actually takes a lot of strength – in many different areas. It takes diligence, perseverance, math skills, a sense of humor, acceptance, the ability to trouble shoot and let things roll off, the ability to start over (and over and over and over and over…).

Diabetes is not for the weak. So even if you think you are weak because your A1C is higher than you’d like, or you don’t get enough sleep, or you forget your insulin every now and then (or more), I’m going to guess that you are actually an incredibly strong person. You have more strengths than you know.

By focusing on your strengths, rather than your weaknesses, you can figure out ways to build on those strengths and improve your life. Find something (anything) that you are doing at all (or doing well) and see how you can apply that strength to living better with diabetes.

You might amaze yourself.

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Increased happiness

messy-bed-with-white-sheets_1203-615You’ll never guess what has been found to increase happiness, and we already know it’s not money…sleep!

I’m a huge fan of sleep – good quantity and quality sleep. I’ve written about the benefits of sleep in the past. Now there’s a study out that showed regular sleep leads to happiness. This study looked at college students, and I’m guessing the results will cross over to those who aren’t in school as well.

So in addition to improved blood glucose levels, higher energy, less weight gain, banishing under-eye circles, improving mood, and lowering risk for illnesses like the common cold, getting good and regular sleep can make us happier.

Good night!

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