Messages of Blame and How We Can Change That…

Today is the third day of #dblogweek and the topic is “the blame game.” I’m tasked with telling you how blame comes up at “doctor'” visits. For my purposes, by “doctor,” I am referring to all health care professionals (HCP).

As you may or may not know, my focus is on the language of diabetes. I have learned that the messages we send/receive can help or hurt and that words really do make a difference.

When those of us with diabetes attend a HCP visit, we often receive messages that impart blame. Non-compliant, non-adherent, uncontrolled, and poorly controlled are some of the words we hear. These are part of messages that blame and judge people.

Because diabetes is a disease that actually cannot be controlled (the parts of our bodies that control blood glucose simply don’t work and so we do what we can to manage it), it is not fair to base how one’s doing on something like control. Instead, HCP can talk about action – what are we doing (or doing well)? What’s working? What’s not working? What else could we try? Try saying “blood glucose levels,” or “A1C,” or whatever it is that you’re actually referring to when discussing control.

Compliance and adherence refer to doing what someone else wants. Because our health is our own, taking care of ourselves is up to us and the choices we make every minute of every day. That’s not compliance/adherence – that’s diabetes self-management. Basing how we’re doing on compliance/adherence is a breeding ground for blame and has an easy fix – make it about the person with diabetes and not the HCP! Ask how we’re doing and what questions we have. Ask if we’d like to hear a suggestion or what has worked for others in a similar situation.

Language matters in general, and it also makes a difference for people with diabetes. Health care professionals can improve the experience at every visit by eradicating blame through choosing messages of strength and hope.

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Alert! Alert!

Today is Diabetes Alert Day, your opportunity to check your own risks for diabetes and alert others as well. Diabetes affects millions and millions (and millions) of people in the U.S. and in the world. Knowing the signs, reducing the risks, and being aware can help everyone.

Type 1 diabetes: an autoimmune disease where the immune system mounts an attack on the pancreas cells that produce insulin. Signs/symptoms include fatigue, extreme thirst, losing weight without trying, frequent urination (peeing), hunger, moodiness, dry mouth, vomiting, labored breathing, or even loss of consciousness. Type 1 diabetes can occur at any age. While there’s no way to lower one’s risk for type 1 diabetes, it is important to know what to look for. Catching it early could help someone get care sooner and may even allow someone to take part in research studies.

Type 2 diabetes: at least eight factors contribute to one’s risk for type 2 diabetes. Genetics plays a huge role in type 2 diabetes. If any of your family members have type 2 diabetes, get checked! If you gave birth to a large baby (more than 9 pounds), get checked! If you have slow-healing wounds or tend to get infections easily, get checked! The American Diabetes Association has a type 2 diabetes risk test you can take. While there is no guarantee that type 2 diabetes can be prevented, it is possible to lower your risk and possibly even delay the onset of type 2 diabetes. Being informed and aware is the first step.

Diabetes alert day – take it seriously!

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We’re all in this together

Facebook claims today is International Women’s Day. I don’t know if that’s a thing or not. I read the line under that announcement quickly and thought it said “Celebrate by creating a non-profit.” What? (It actually said “…by creating a fundraiser for a non-profit.”)

This reminds me of all the non-profits out there for diabetes and other (important) causes. Sometimes I wish we could all simply work together. It starts to feel like too many spokes on a wheel. But then again, can there be too many spokes on a wheel? Does it cause wind resistance and slow us down, or does it actually give us more stability?

At any rate, women’s day, men’s day, diabetes day, or otherwise, I truly believe we’re all in this together. Let’s get to work, keep working – and do our part to make the world a better place for everyone.

Have a great day, whoever you are!

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Showing up every day

WDD-logo-date-EN-2048pxToday is just another day with diabetes for those of us living with it. It happens to also be World Diabetes Day, so many are making a big deal today.

Not just today, but every day we show up, wake up, keep breathing, keep thinking about every little that affects diabetes and every little thing that is affected by diabetes.

Every day we poke fingers, take medications/injections, count carbs, exercise, treat lows, treat highs, think, think, think.

Today I’m thinking about those who don’t have access to insulin and how we can help them. Today I’m thinking about the people who don’t even know they have diabetes yet (and they’ve already had it for years). Today I’m thinking about the people who feel the stigma of diabetes, or are hiding their diabetes, or are ashamed of their diabetes.

Today I’m hoping we can move past all of this. Today I’m looking forward to the time when there’s no longer a World Diabetes Day.

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Jane’s answer to the high price of insulin

My dad recently asked me about the price of insulin. He said he had read something about how expensive insulin is and was concerned about it. I don’t talk about diabetes with my family very often. They ask an occasional question, I answer, and we move on. Diabetes is never our focus.

But dad’s question got me thinking. I’m incredibly fortunate to have good insurance coverage, while many others do not. Today I was reading an article about the price of insulin and how it has gone up hundreds of percent over the last several years.

How is this possibly ok? Another example of lack of cohesion in health care. My proposed solution: get key players from health insurance, pharma, healthcare, consumers/patients, and government together at one table. Let them talk it out until they figure out the best way to manage costs in health care. They can use lifelines – call or video conference someone into the room who may know more or have a better perspective.

I picture it kind of like choosing the next pope. Maybe smoke is coming out of the chimney. Maybe these people don’t emerge for weeks (food can be delivered…), but they get it done. They consider the best interest of everyone involved, act with transparency, cooperation and good faith, and figure it out.

I believe it could happen.

That’s all.

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National Day of Action for Diabetes

Today is as good a day as any to take action for diabetes. It also happens to be the inaugural National Day of Action for diabetes, and there are so many things you can do!

  • check your BG before and after exercising and participate in the “big blue test”
  • visit the ADA’s website and click on “take action”
  • make an appointment to see a diabetes educator and learn some tools for managing effectively
  • talk to a loved one who is at risk for diabetes about getting checked
  • sign up for an exercise program…with a friend!
  • try a new, healthy recipe
  • join an advocacy group or effort
  • volunteer to participate in diabetes research
  • give yourself a pat on the back and enjoy some downtime

Take action in whatever way works best for you. Enjoy!

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The College Diabetes Network (CDN)

I wrote about a college fair and a college recruiter last week, so I guess it makes sense to continue the theme and write about diabetes in college this week.

If you know someone with diabetes who is finishing high school and heading to college, be sure to let them know about CDN. This non-profit organization was founded in 2009 by a student who didn’t want to feel alone and reached out to others on campus with diabetes. Now CDN is a thriving organization with chapters on college and universities all over the country. Their logo is …for the highs and lows of college life. How perfect is that??

CDN provides support to college students with diabetes, including answers to common questions, online resources, get-togethers with peers on campus, and pamphlets for students and parents. The Off to College booklet offers all sorts of suggestions for the everyday things that come up that a soon-to-be college student or parent of a college student may not even anticipate!

Check out CDN’s website for more information or to help start a chapter today.

 

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More Than Numbers

Yesterday my son and I went to a College Fair. It was quite an event – more than 250 colleges in attendance and some interesting seminars. It was our first venture into the college search phase of life.

We attended a seminar at which a recruiter from Duke University said the following (regarding what they look for when considering applicants): You are not just a set of numbers; you are a whole person.

Boy, that sounded familiar…Oh yea! We say that about people with diabetes. We are not just numbers; we are people. In fact, this came up at a recent #DSMA live event at #AADE16 in San Diego. We were having a lively discussion about diabetes, language, social media and more, and one participant noted that we are not our A1C. Interestingly enough, someone tweeted in that yes, we are, in fact, our A1Cs, are we not?

I admit I was pretty shocked, yet in retrospect I can see why someone might think that. A1Cs are certainly part of us – they represent the glucose attached to our blood cells, after all. But I think the more important message is that our A1Cs don’t define us. Numbers don’t determine our worth or our success in life. Some people maintain an A1C in the 5s, while others work incredibly hard at managing diabetes and have an A1C above 7%.

Sometimes I get a little frustrated when I see/hear others parts of the universe “getting it” and not those who are in diabetes. Why would a college recruiter understand that people are more than numbers before diabetes professionals, or even people living with diabetes? Why have people working in other diseases, conditions, or situations figured out that it’s not ok to stigmatize and stereotype people, yet not in diabetes?

It’s time to take a closer look. It’s time to validate people with diabetes and the work they do every day. It’s time to acknowledge the emotional side of diabetes so things like not calling us numbers (or names, for that matter) mean something. It’s time.

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Tools for Diabetes Management

I know it’s true for me, and I’ve noticed it in others…those of us with diabetes can get stuck in a rut. We like what we like. I once read “I would die without my pump” and I thought, “That’s awful! What if your pump malfunctioned?” But the more I thought about it, I realized that I would be lost without my blood glucose meter. I’ve been checking blood glucose levels for over 30 years and I honestly don’t know how I would manage without that information. For others that’s a pump or a CGM or a certain medication.

So I’m adjusting my response to the “I would die without…” quote. Now I’m saying I get it! And I think it’s important to be informed about how to manage without it. I also think there are lots of tools out there. For those with type 1 diabetes that includes pens, pumps, injections, carb counting, continuous glucose monitoring, inhaled insulin, and hopefully soon there will be more options. For those with type 2 diabetes there are multiple different medications – all address lowering blood glucose levels from different angles.

Learn about the various options for managing diabetes. Meet with a provider who is open-minded, listens to your ideas and needs, helps you build on your strengths and encourages you to do what works best for you. Use the tools you love, and know how to manage without them (just in case).

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Compliance vs. Contribution

I am often inspired by things I read. This was one (thanks, Seth Godin, as usual). I love the idea of substituting “contribution” for that yucky word “compliance.” It really works in diabetes because compliance means doing what someone else wants, which simply doesn’t fit when managing a lifelong disease like diabetes. The person living with diabetes is the one who makes decisions and takes action to manage it daily. Therefore, we are talking about their contribution to diabetes management, rather than their compliance with someone else’s demands/rules/expectations.

I would take it a step further and suggest that “engagement” might be another replacement for “compliance.” When someone is truly partnering with their health care providers, when they are in agreement with the plan and taking action toward it, they may actually be doing more than making a contribution. They are engaged. And “engaged” is so much more more empowering and strengths-based than “compliance.” I can feel my energy level fall when I hear “compliance,” whereas it rises when I hear “engage.”

Words matter!

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