{"id":44645,"date":"2016-07-06T00:00:00","date_gmt":"2016-07-06T04:00:00","guid":{"rendered":"https:\/\/asweetlife.org\/exiting-the-diabetes-union\/"},"modified":"2016-09-24T20:40:28","modified_gmt":"2016-09-25T00:40:28","slug":"exiting-the-diabetes-union","status":"publish","type":"post","link":"https:\/\/asweetlife.org\/?p=44645","title":{"rendered":"Exiting the Diabetes Union"},"content":{"rendered":"
\n

You\u2019ve heard of Brexit, Great Britain voting to exit from the European Union. I\u2019m thinking about Dexit, exiting from the Diabetes Union. That stronghold of health professionals, insurance companies and regulatory agencies that impose impossible standards on people with diabetes.<\/p>\n

Standards may be causing more harm than good. Just take a look at these:<\/p>\n

Standard #1. You Can <\/strong>Control<\/em> Blood Sugar<\/strong><\/h2>\n

No, you can\u2019t. Once people no longer have a properly functioning pancreas, their blood sugars are designed to be out of control. Yet we make people with diabetes feel achieving \u201cnormal\u201d blood sugars is just a matter of being diligent. Worse, when they don\u2019t get them, we call them lazy, irresponsible and unmotivated.<\/p>\n<\/p><\/div>\n

\"Dexcom<\/a>
Too many variables to not have days like this<\/figcaption><\/figure> I was on a panel for the psycho-social side of diabetes at this year\u2019s American Diabetes Association\u2019s national conference. Moderator Barbara Anderson, PhD and Professor of Psychology\u2019s first question to me was, \u201cWhat do you find tough about living with diabetes?\u201d \u201cThe toughest thing is you can\u2019t control it,\u201d I said. \u201cAnd I\u2019m tired of everyone telling me that I can.\u201d I had to stop as cheers rose from the audience. We patients know this. Yet we and our blood sugars are constantly judged, rated and compared to people without diabetes. No matter how many \u201cright\u201d things I do, there are too many variables \u2013 known and unknown \u2013 for me to control the outcome. Read Adam Brown\u2019s wonderful list of 22 factors<\/a> that influence blood sugar.   <\/p>\n

Standard #2. Blood Sugars Can Be Predicted Based On Your Actions<\/strong><\/h2>\n

No, they can\u2019t. My actions help influence my blood sugar, but they don\u2019t ensure the numbers I hope for. Many times not even close. Why else would we talk about the \u201cX factor\u201d? Do the same things two days in a row and you\u2019ll get different numbers. Many in business and the military are familiar with the term VUCA. It stands for Volatile, Uncertain, Complex and Ambiguous. It is an acronym for situations that are rapidly changing and challenging where choices and consequences are unclear. Diabetes is a VUCA disease. Especially type 1. Dealing with anything VUCA requires emergent, in-the-moment solutions. Hmmm…the opposite of standards. If we respect the VUCA of blood sugar management, then we need to work with people differently. We need to help people discover actions that will create the greatest potential for in-range blood sugars – for them, and how to respond when those are not the numbers they get. Blood sugar management is not cause and effect. People with diabetes, because\u00a0<\/em>they have diabetes, are now designed for unpredictable blood sugars. Not acknowledging this truth causes people to feel like failures. Much of the heartache of living with diabetes.   <\/div>\n

\"Riva<\/a>
AUTHOR 35 YEARS WITH DIABETES.<\/figcaption><\/figure>\n
\n

<\/h2>\n

Standard #3. You\u2019re Just a Disease So Ignore My Language<\/strong><\/h2>\n

Language is powerful. In diabetes it often creates critical self-judgment. Why are we still using, \u201cTest your blood sugar\u201d instead of \u201cCheck your blood sugar?\u201d You do get that \u201ctest\u201d alone implies judgment \u2013 we are either passing or failing with each blood sugar \u201ctest.\u201d<\/p>\n

There\u2019s been a push to get away from labeling blood sugar numbers as \u201cgood\u201d and \u201cbad.\u201d They are best used as information to guide our actions forward. Yet why do we call extra doses of insulin \u201ccorrection doses?\u201d Did we make a mistake the first time?<\/p>\n

Have you ever<\/em> heard the words \u201cnon-compliant\u201d and \u201cnon-adherent\u201d used outside of diabetes? These are medical terms that have crossed over to judge people. Enough said.<\/p>\n

Standard #4. Use Huge Population Studies For Universal Standards Of Care: What Works For The Average Will Work For You<\/strong><\/h2>\n

Really? But I\u2019m so un-average. I\u2019m a 62-year-old Caucasian woman of Eastern European descent living in a much too small one bedroom apartment in New York City. I\u2019m 5\u20194\u201d, or used to be, 125 pounds, on a good day, and if I look at a donut I\u2019ll gain weight just like my rolly polly ancestors.<\/p>\n

I have had type 1 diabetes 44 years, a good ten years before I had a glucose meter. I was put on orals the first three years being wrongly diagnosed with type 2. Although I identify as a New Yorker, don\u2019t ask me where to get the best bagel. They\u2019ve long been off my low carb diet.<\/p>\n

How much do I have in common with another type 1, let alone a type 2? How much do they have in common with me?<\/p>\n

Whittling everything down to the lowest common denominator doesn\u2019t work for individuals. Who are we treating – flocks of geese, herds of cows, or people? We minimize getting it right for individuals when we start from the average.<\/p>\n

I don\u2019t want to give you a fifth standard because that would be so standard, but I must acknowledge this crippling standard for our health care providers.<\/p>\n

Standard #5. The Impossible Standards Placed on Health Professionals Who Work With People With Diabetes<\/strong><\/h2>\n

The health care profession increasingly has misplaced the word, \u201ccare.\u201d Not because those who go into the field don\u2019t have it, don\u2019t want to give it. But because the health care \u201csystem\u201d has nearly made it impossible.<\/p>\n

Twelve minute visits, half the time spent on electronic records, picking codes and \u201cchecking boxes,\u201d as one educator nearing her certification said to me. Making sure you covered what was on someone else\u2019s list, not yours.<\/p>\n

Diabetes care, as medicine has become institutionalized, modern and test-based,\u00a0has become looking at the parts – blood sugar, cholesterol, blood pressure, cardiac markers, microalbumin…and missing the whole – the person sitting there.<\/p>\n

These standards, meant to improve patient\u2019s health,\u00a0is in part why so many people with diabetes do not improve.<\/p>\n

We could help people manage and live with diabetes a lot better by telling the truth about \u201ccontrolling\u201d blood sugar. That life without a working pancreas is VUCA. By not labeling people and measuring them against the average. By supporting health providers to be with<\/em> their patients.<\/p>\n

Equipping people to best manage their diabetes and remain invested in doing so starts with a message like this from a health professional, \u201cKeeping your blood sugar in range is hard work. All I ask is that you do your best most of the time. We\u2019ll figure out your unique health patterns together and how you can get blood sugars in range more often. And when they\u2019re not, when you do all the \u201cright\u201d things and your numbers don\u2019t reflect it, you\u2019ll also know how to respond – without blame or self-judgment. Because, it\u2019s just another diabetes day.\u201d<\/p>\n

That\u2019s the standard of care I\u2019d like to add to diabetes.<\/p>\n

Maybe I don\u2019t want to Dexit but move to the side. The side where we tell people living with diabetes the truth. The side where we focus on what people do well, help them build on their successes and champion them forward.<\/p>\n

Think about it. Standards really don\u2019t belong in diabetes standards of care.<\/p>\n<\/p><\/div>\n","protected":false},"excerpt":{"rendered":"

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