Jane K. Dickinson, RN, PhD, CDCES

Sugar Coating vs. Tough Love

Posted on October 12, 2018 by janekdickinson

Question: “Sugar coating” is not honest. “Tough Love” should be the motive. How to balance?

When I see/hear this type of question I immediately think I’m not doing a good job communicating the intent of this language movement. I will keep trying to get the message across in different ways so that everyone understands what we’re talking about.

Our efforts to change the language of diabetes is not “sugar coating” at all. Diabetes is real, it’s scary, it’s complex, it’s hard, it’s emotional, it’s burdensome, it’s expensive, and it’s dangerous. No one is denying or even discounting any of that.

And we are not seeing results across the board. And people with diabetes feel judged, shamed, blamed, threatened, dismissed, guilted, and coerced. The way health care professionals, friends, family, media, and the general public talk to people with diabetes makes a difference. It has an impact. For many people it leads to self-defeat, discouragement, and even avoidance (avoiding follow up care, avoiding self-care). Regardless, it’s not good.

So the language movement is an effort to change all that, to use messages that build people up, give them hope, and encourage and support them in their daily grind with diabetes. There is absolutely nothing dishonest about this approach.

My response to the question is this: Rather than sugar coating or tough love, use open, honest communication based on facts. Focus on people’s strengths and build on those. Empower people to engage in their diabetes management, and establish trusting relationships where people with diabetes feel safe and supported.

The way we talk to people matters.

*This is the first in a series of questions I was asked at a recent conference that I will answer through this blog.

Primary Care and Diabetes Education: blogging my answers

Posted on September 26, 2018 by janekdickinson

Earlier this month I had the opportunity to participate in the Cardiometabolic Risk Summit (CRS). It was an informative conference attended by mostly primary care providers.

At this conference they have people write their questions on cards. They collect the cards throughout each day and deliver them to the appropriate speaker. Q & A panels are strategically timed each day where the speakers attempt to answer as many questions as they can.

But it’s impossible to get to all of them.

I suggested that I would take my “question cards” home and answer the remaining questions via this blog. So that is what I’m going to do. I will identify the blog posts that serve as answers to questions from the CRS, and hopefully attendees are following along!

PS Here’s the information for the CRS that just happened, in case you are interested in attending a future one!

Posted in diabetes news, health care providers, health information | Tagged cardiometabolic risk; answers; questions | Comments Off

Labor Day and Diabetes

Posted on September 3, 2018 by janekdickinson

Labor Day honors the laborers who built the backbone of our country. We are incredibly grateful to the people who built our roads, bridges, railroads, buildings; the miners, and all the factory workers; the tradespeople, and everyone else I’m forgetting.

In diabetes we’ve seen amazing advances in supplies, devices, and medications, so I want to give a shout out to all the workers who played or play a role in making all the things we are so dependent on every day. From the glucose strips to the pen needles; from the pump parts to the CGM adhesive. All of it.

How often do we actually stop and think about what goes into making these products? Are they all made by machines these days? Maybe. But I’m guessing workers oversee those machines and make sure everything goes as it’s supposed to so we get our goods on the other side.

Thanks to everyone who labors for those of us who have diabetes. We wouldn’t be here without you.

Posted in about diabetes, diabetes products | Tagged diabetes, labor day, products | Comments Off

mySugr and me

Posted on August 13, 2018 by janekdickinson

This post, mySugr and me, was sponsored by mySugr.

I tried something new over the past few weeks! Yay me, because I tend to get stuck in my diabetes ruts. This time I tried an app for glucose monitoring. The app is called mySugr, it comes with unlimited strips and access to a diabetes educator/coach. Pretty intriguing!

My thoughts/feedback:

The meter (Accu Chek Guide) was easy to set up, easy to use, and all the things you’d expect. As someone who is aging (oh yea, we are all aging), I did not like the teeny-tiny strips. While I did not have too much trouble with them, I think an older person or someone with dexterity challenges could. The bottle they come in, however, is pretty cool, and the way they suck the blood in sideways is cool too. I found myself tagging my BG (blood glucose) results, and was bummed there was no “before/after exercise” option. I think this would be especially helpful for working with the diabetes educator.

I reached out to my “coach” (diabetes educator) and found her responsive, friendly, and willing to be helpful (I didn’t have specific questions). I did learn that the coach is only available through the app and speaking by phone is not an option. Being a live interaction person (who teaches online, ha!!), I would have liked that option. On the other hand, I’m sure one can accomplish a lot through typing as well – we certainly do in class!

unnamed (1) This digital health app loaded nicely on my iPhone and is very easy to navigate, makes sense, etc. At first the little monster scared me when he/she/it made that noise each time data/numbers came through. After a while I got used to it though, and I admit it is cute and quirky. I named mine “Strength.”

My challenge was with transferring data. Three times the meter stopped transferring my numbers over to the app. The first time I was able to force a transfer of data and then it started sending automatically again. The second and third times it stopped working and didn’t start up again, so I had an opportunity to check out the FAQ and support!

Right now the support response is a little slower than I would like, and it’s hard to get a human on the phone. While I realize this works for many (most?) people; I still like to talk to someone when I’m having trouble getting something to work.

When I did speak with the support person at mySugr, she was able to help me trouble shoot – and fix! – the problem. She was not able to tell me why I was having this strange problem and suggested a workaround of sorts for when/if it keeps happening. She apologized for the inability to call and speak to a human and for the delay in hearing back from support. She assured me that mySugr is working on a quicker turnaround. She was very friendly, helpful, and willing to listen to my feedback. She told me she would pass it along to the company.

I got the feeling this app is geared toward a younger crowd. However, I think it would be a great app for a broader audience than that, which is why having support available around the clock and throughout the week would be helpful. They do have short video tutorials (some people learn better by seeing/hearing than by reading instructions) within the FAQ, which is very helpful. Having the ability to talk to someone is really only necessary if we can’t find what we need in the FAQ.

Takeaways:

Very convenient to have strips delivered to your door in unlimited quantities
Amazing to have access to a diabetes educator/coach for questions, bouncing ideas off, etc.
Cute monster – clearly a fun, friendly company (that is open to feedback and improvement)
Motto: “make diabetes suck less”
Nice, knowledgable support person
Easy to use meter and app
Cool to have an estimated A1C
Having blood glucose readings logged and immediately available is wonderful for people to engage in their results and care. This might be the best thing about it, because otherwise we wait until provider visits to see those trends.

The really fun part:

mySugr and I are giving away two 6-month mySugr bundle subscriptions! Here’s what you have to do for a chance to win: leave a comment below and tell us what you will name your diabetes monster. Drawing is open until August 20th. Fine print: This giveaway is open to US residents only. Existing mySugr bundle subscribers and those insured by government programs (Medicare/Medicaid) are not eligible to participate.

Posted in diabetes products, Uncategorized | Tagged digital diabetes care, digital health, digital healthcare, digital tech, make diabetes suck less, mySugr, mySugr Bundle, mySugr Coach, mySugr Pro, unlimited glucose strips | Comments Off

Parents of/with diabetes

Posted on August 3, 2018 by janekdickinson

Check out the cuteness of my parents. They raised me to know (without ever saying it out loud) that diabetes would not stop me from doing anything. It turns out the nurse diabetes educator in the hospital where I was diagnosed taught them that in their first days of learning about diabetes.

I am now a parent with diabetes. That takes hard work, a lot of thought, and attention. I can’t even imagine being a parent of diabetes. I have so much respect for my parents and how they managed back in the dark ages (urine glucose monitoring, etc.), and for parents who do it today.

My parents never made diabetes a big deal. They took it in stride, made it part of life, and moved on. That is the most amazing gift they could have given me. And it shaped how I have managed my diabetes since I became independent. Granted, I still did a fabulous job of being a typical adolescent and young adult and thankfully lived through all that.

What I’m really talking about, though, is the attitude they instilled in me: an attitude that life is first, diabetes is second. I believe that with all my heart, and I manage my diabetes such that I can live my life. My dad often said (not referring to diabetes, and it still fits), “anything worth having is worth working for.”

There you have it. Thanks, Mom and Dad.

Posted in about diabetes, diabetes advocacy, diabetes education, diabetes motivation | Tagged attitude, diabetes, guidance, parents | Comments Off

The most important thing in diabetes

Posted on July 30, 2018 by janekdickinson

I cannot tell you what it is. I do know that it varies from person to person. What do you consider the most important thing in diabetes?

Prevention?
Accurate information on the street (in media)?
Access?
Insulin for all?
Better medication?
Better technology?
Artificial pancreas?
A cure?
Something else?

I acknowledge that language may not stack up against those other things for many, if not most people. For me, however, language is pretty high up. In fact, aside from curing diabetes, I think the way we talk about it and the people living with it is mighty important.

I have met enough people who have felt the impact of negative language to see what it’s doing. It is not helping anything and in many cases it’s contributing to poor self-esteem, decreased engagement, lack of trust in providers, and diminished self-care. I also know that many, many people out there are affected by negative diabetes language and don’t even know it, let alone feel comfortable saying or doing something about it. So I’ve made it my mission to talk about it and work toward changing it.

I don’t blame you if changing the language of diabetes isn’t your mission. There are plenty of other critical issues for people to advocate for and support. I do hope, though, that you’ll consider adding language to your list of important things to at least think about.

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Know your diabetes medications

Posted on July 27, 2018 by janekdickinson

People with diabetes very often need medications to manage and keep blood glucose levels in a safe range. We do this in order to protect our blood vessels and reduce the risk for long-term complications.

In order to take medications with confidence, and to feel good about taking those medications, we need to understand what we’re taking, how they work, and what the possible side effects are.

Before starting any medication, be sure to talk to your health care provider about it. Share in making the decision to go on a medication, ask questions, get answers, and be knowledgeable about what’s happening.

Some things to know about all of your medications (not just for diabetes):

brand name (what you call it) and how to pronounce it!
generic name (what manufacturers and health care providers may call it)
how it works
possible side effects (some diabetes medications can cause low blood glucose)
dosing (is it something you adjust, or is it a fixed dose every day)
when to not take it
what other medications (or foods, or supplements) it might interact with

Some people mistakenly think they should change the dose or stop taking a medication from time to time and for different reasons. Be sure to ask up front so you are well informed and use your medication correctly. This is the best way to get the most benefit from the medications you take.

If your medications are causing you problems, talk openly with your health care providers. Tell them if you are having side effects that are interfering with your life, or if you can’t pay for your medications. Open communication is the best way to get the care you need. There may be a different, cheaper, or better option for you, so be sure to ask.

Posted in about diabetes, diabetes advocacy, diabetes medication | Tagged communication, diabetes, diabetes medication | Comments Off

The “ic” word

Posted on July 23, 2018 by janekdickinson

Time to discuss the “ic” word (diabetic) again.

I’ve discussed this with many people, and it is safe to say that about half of people (based on several surveys) with diabetes either refer to themselves as diabetics, prefer to call themselves diabetics, or don’t care what they are called.

The other half are bothered by the word diabetic, don’t call themselves that, and/or don’t like to be called that.

Personally, I stopped referring to myself or anyone else as a diabetic in approximately 1988. When I say we’ve been talking about the language of diabetes for decades, I’m not kidding!

I don’t identify as a diabetic, I don’t relate to being a diabetic, and when someone asks if I’m a diabetic, I simply (and pretty stealthily, I think) correct them by saying, “I have type 1 diabetes.” In fact, I never answer “yes” to that question.

So here’s the deal. The language movement that’s going on now is not an attempt to correct or scold anyone for calling themself whatever they want to be called. I have no problem with someone referring to themself as a diabetic. We are simply asking health care professionals (and any others who are interested) not to refer to others as diabetic (adj.) or diabetics (noun). We are simply leading by example because we know that it can be a stigmatizing, unhelpful word, and if half the people are bothered by it, why take the chance?

That’s all. (Stay tuned for why #languagematters is not the most important thing in diabetes.)

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Turn surviving into thriving

Posted on July 20, 2018 by janekdickinson

“When you’re surviving you can’t dream” Michael Ketterer.

Well that’s profound. When I think about examples of people surviving, it’s clear to me that this is true. When we are focused on getting by, getting through the next moment, day, whatever, we can’t even imagine what might be or dream about getting there.

Surviving is like coping. We cope with bad news. We cope with negative situations. And hopefully just long enough to move into the next phase – doing something about it. If we’re coping, we’re just getting through it. Is it possible to just get by every day, for a lifetime? Sure. Is it enjoyable? I’m guessing no.

What can we do to move from surviving, or coping, to thriving? What will it take to truly live life and enjoy ourselves? This will certainly look different for each person. Take some time to think about what it would take for you. What if the next time you start to complain about something related to diabetes, instead you think of something positive diabetes has brought to your life?

How about making up a little happy dance or phrase every time your blood glucose lands where you want it? Maybe laugh about overtreating a low instead of berating yourself? (“Oops – did it again!”) Order a custom designed t-shirt with your favorite blood glucose number on it (and keep people guessing). Start dreaming about your next life goal…and then start working toward it.

I wonder what would/could happen if we turned surviving into thriving.

Posted in diabetes advocacy | Tagged attitude, diabetes, survive, thrive | Comments Off