Jane K. Dickinson, RN, PhD, CDCES

The thing is, it’s not possible to cheat in diabetes. The word doesn’t make sense.

We can cheat ourselves, but that’s about it. The rest are just choices.

There’s no way to bully or make our way to the top in diabetes. It’s only about how we feel, how productive we are, and how much living we do.

The numbers don’t prove anything else. They don’t represent our worth or value (I think that’s the same thing). They are not a reflection of how good or successful a person we are.

Cheating may apply in games, class, sports, at work, with the IRS, or other places in life, just not in diabetes.

If we talk about cheating in diabetes, we are sending the wrong message. Let’s turn it around and talk about informed choices and engagement in care decisions/actions. This is true for those living with diabetes and talking about themselves, as well as for family, friends, strangers, and those in health care professions.

Nope. Not true. The point of the language movement is not to shame or blame. In fact, that would fly in the face of the whole point of changing our language in diabetes.

People living with diabetes report that they feel shamed and blamed by health care professionals, family, friends, the media, and society in general. This shows up everywhere (clinic visits, home, school, parties, street corners, etc.). It doesn’t feel good, and more important, it doesn’t help someone manage their diabetes or live well with it.

So here we are several years into the work of moving away from negative, judgmental words and messages and moving toward acceptance and messages that impart hope.

It turns out that there are many language movements going on right now, and that can get confusing. People can start to feel like they aren’t allowed to say anything and they are worried about getting in trouble. Or they might just feel like throwing in the towel and saying forget it. Or they may even be getting angry and annoyed about it.

The real goal is to become aware of our own words and messages as well as those around us – spoken and written. Do they impart judgment and shame, or hope and acceptance? Then start making small changes that align with the person-centered and empowering suggestions in the language guidance resources that have been published.

If you are stumbling on words for a while, that’s ok. That just means you are aware of the problem and working to change it. Thanks for that! Please don’t be afraid of getting in trouble, though. It’s like when we check a glucose and it’s high. It’s just information we use to make a decision. We don’t want people to be afraid to check due to fear of getting in trouble.

The only trouble with the language movement is if it stops moving…forward.

I said I would be better (more consistent) about posting in 2022, and since today is a special number day, here we go.

First, anyone else remember “blood sugar bingo”? We played it at Clara Barton Camp back in the 80s (brought to us by a fun pediatric endocrinologist). If your glucose reading was the same as the date, you won. So on July 2nd, 72 was a winner, and so on. A glucose reading of 100 always won, in addition to the date. I think for dates past 9 the winner became 110, 111, etc. We weren’t hoping for results like 718 or 812 or anything like that! (Feel free to correct me in a comment if I’m remembering this wrong.)

Second, to continue with the theme of “why it matters,” I will discuss one of the words we are trying to remove from the language of diabetes. Since we’re already talking about glucose readings, I’ll highlight test.

The reason test doesn’t work in diabetes is because blood glucose monitoring is not a test or a test result. Many people think of a test as a pass/fail scenario. At the very least it’s a measure of how we are doing at something, which also implies good/bad. Diabetes management is about making decisions and choices on a moment to moment basis every day. It’s not about right or wrong. We take the information we have – including glucose readings – and make a decision about what we will do next. In fact, some people refer to glucose readings as data points.

Replacements for test include monitor and check. I like to think of it as checking in. This conversation will be moot in a few more years when continuous glucose monitoring takes over and everyone with diabetes has access/coverage. Until then…I vote for eliminating test when referring to glucose levels.

I have been thinking, talking, learning, reading, studying, writing, sharing, and hoping about the messages in diabetes since 1990 (it could have been 1988).

I truly believe it matters what we say to and how we talk about people with diabetes. I’ve seen the effects and I’ve heard the stories about how words and messages make a difference – good and bad, positive and negative, short and long term.

Negative messages erode hope.

This is not just true in diabetes – it’s actually a thing for all people in all of health care. I happen to be focused on diabetes right now. When we fix that, I’ll move on (I promise).

We have made some progress, and we still have a long way to go.

The language/messages of diabetes matter because people with diabetes hear them in context. They create meaning from what they hear and that meaning has a direct impact on their thoughts, feelings, beliefs, and actions. In turn, those thoughts, feelings, beliefs, and actions have an impact on health outcomes.

Thinking about and changing the way we speak to and about people with diabetes is do-able. It doesn’t cost anything. And it helps people – it makes a difference in a positive way.

We are one hundred years down the road from the day when insulin became commercially available and began saving lives. And in those one hundred years we’ve seen incredible advances in how we manage diabetes. We’ve also seen the birth and continuation of a language that tends to be judgmental, shame/blamed-based, negative, and problematic for people living with this challenging disease.

2022 is the year we need to turn this around once and for all. Reality check – it’s the year we can at least take more steps in that direction. All are welcome to join the “language movement” – it’ll be fun.

Here we are. The much anticipated World Diabetes Day 2021, during the 100th anniversary of insulin. Insulin has been available to humans – exogenously, or from outside the body – for 100 years.

When I dressed up like a U-100 insulin syringe (and my friend as a vial of insulin) for Halloween, and participated in our community’s downtown stroll, I got some interesting looks, comments, and questions. Once people saw the signs (“100 years” and “of insulin”) they tended to catch on, although most people still had no idea. One group of older women stopped us and asked, “what did people with diabetes do before 1921?” to which we answered, “they died.” That got a gasp. Another of their group said, “100 years doesn’t seem very long.” Indeed.

Then again, a lot has happened in that 100 years. I don’t need to list all the advancements in glucose monitoring, types of insulin, insulin delivery, and research toward even more advancements as well as prevention and cure. I’ve written previously about my sincere gratitude toward all the smart people who have done and continue to do this work.

On World Diabetes Day I’m always inspired to thank those who have dedicated their lives to helping people with diabetes – whatever form that may take. So once again, thank you. I also want to acknowledge all those living with diabetes, who work hard every (minute of every) day to manage this disease and incorporate it into their lives so they can go out and be productive and happy and whole.

I am also grateful to all the family and friends who support people with diabetes – in countless ways. My own parents made it clear to me from the very beginning – without ever saying it out loud – that diabetes would not stop me from being me and doing what I was meant to do.

We still have a long way to go and a lot of work to do. Insulin saves lives, and it’s not a cure. We still need “smart insulin” and we still need access to insulin for everyone whose life depends on it. In the meantime, happy World Diabetes Day!

I have compared managing/living with diabetes to parenting in the past, and the other day it came up again. My kids came home from college in mid-November and stayed until late January and mid-February, respectively. Thanks to COVID, what would have been a quick visit at Thanksgiving and a little bit longer visit at Christmas, turned into two-and-a-half to three months with young adults in the house.

For me it was a mixed bag. I had adjusted to having them gone. I was getting a lot done, the house was staying clean (I would walk by their rooms and bathroom, pause, and smile at the floor {because I could see it}, and the tub {it was the color it was supposed to be}), and I was happy that they were where they were meant to be at this life stage.

Then they came home. Once again I was shopping and cooking for more people. Once again there was noise, distraction, and messiness. And I adjusted to that and loved having them around. I got less work done, dealt with the mess, and didn’t look in their rooms or bathroom.

In the days leading up to them leaving I had to mentally prepare for the quiet. Again. Then it hit me: this is what it’s like to manage diabetes. Just when you think you’ve got it down, everything changes. When you finally decide to adjust the basal rate/dose, instead of running high you start running low. And then you have to adjust all over again.

In the past I’ve referred to diabetes as my “third child.” Now I’m rethinking that, because this precious offspring won’t be going away to college or moving out permanently one day. It’s here to stay. What joy.

So I’m learning how to parent young adults – balance giving them space with still having expectations while they’re home. And I’m figuring out how to manage diabetes at each new stage as well.

They both certainly keep me on my toes!

Happy New Year!

Well, the diaTribe Making Sense of Diabetes newsletter has gone and done it again. In the past I’ve mentioned how much I appreciate their recipe column with Catherine Newman (and I still do!).

Today I found a very helpful article about the COVID vaccine. (I was going to make my way through 2021 without bringing up this pesky topic, but oh well.)

I appreciate the timely, relevant, clear, and helpful information diaTribe writers provide through their articles. There really is something for everyone (affected by diabetes)!

This particular article helped me more clearly understand the risks and benefits of the vaccine in a completely neutral way. I am not currently working “on the frontline,” so I have not yet been vaccinated. I was not sure, though, if I would be offered the vaccine soon because I have type 1 diabetes…now I know! Or at least I know as much as can be known for now. (And yes, you have to read it yourself to find out.)

In a world where messages are inconsistent and things are changing moment to moment, it’s nice to know there’s a reliable source of information at our fingertips.

If you haven’t signed up yet, there’s no reason to wait.

So I just found this in a file folder labeled “blog”:

Stuck.
Doing what we’ve done.
It’s worked ok.
Not perfect. Not horrible.
There are probably better options.
But it would take work.
So we stay where we are.
Stuck.

While I have no idea when or why I wrote that, it just seems right for tonight. I opened this page much earlier today with intentions to craft a timely post. Today marks the last day of Diabetes Awareness Month and all, blah blah blah.

I can think of several parallels between this “poem” (?) and our lives today, yet I’ll let you decide how it fits into your reality – or not.

I have some plans for getting unstuck in the new year. Stay tuned!

Good night, Diabetes Awareness Month. See you next November. Hopefully without a mask!!

For now… Not perfect. Not horrible.