I Don't Expect You To Know…

1436093_55811447My car runs on unleaded gas. It goes from point A to point B (and sometimes to point H when I don’t follow the GPS correctly) and it has an engine. I understand the basics of internal combustion and in my more adventurous youth, I even changed my spark plugs and oil on my own. (I think every woman every person should know how to do that.)

I drive it with the knowledge that I don’t know everything about how a car works. I watch Top Gear (the U.K. version, of course), but that does not make me a gear head. There’s a lot I don’t understand about cars.

I’m not expected to know; that’s why expert mechanics exist. If it makes a funny noise or squeals as I brake, I take it to someone who can diagnose the issue and hopefully fix it without putting me into hock. Even people who change my car’s oil may not understand how the engine works or what that funny noise is.

Replace car with diabetes and other appropriate phrases related to a disease. (Heck, if you want to go for broke, you can replace car with any major illness.)

Now re-read those first two paragraphs.

I Don’t Expect You To Know…

I don’t expect you to know how diabetes works (or doesn’t work). There’s a lot of moving parts to the intricate dance we do each day to get from Point A to Point B (and we sometimes end up at Point H without any idea of how we got there). I don’t expect you to know how I feel when my blood sugar is crashing to the floor or soaring towards the ceiling; my symptoms and side effects are unique (although many share the same symptoms and side effects). I don’t expect anyone to know what the diagnosis signs are or how they can help me, and millions of other people, live well.

All of this to say: Let’s stop berating others if they don’t know about diabetes, especially those in the medical field. Sounds crazy, right?

“What do you mean the ER nurse didn’t know what a CGM is?”

“The optometrist asked you what your blood sugar was this morning?”

“The doctor wanted to take your insulin pump off in the hospital?”

“The LPN told you that she has diabetes, too, when she saw your medical alert bracelet, but that hers wasn’t severe?”

“The nurse said that they’d give you insulin just when you eat, but no basal insulin at all?”

We are the experts…

We are the experts. We live with this disease 24/7/365 ad infinitum. Most of the medical world hasn’t had more than a mention of diabetes in a class for their certification or degree (with the exception being CDEs and endocrinologists). Are you amazed at that?

This is the curriculum for a BS degree in Nursing at NYU. There isn’t a single “Diabetes” class in their four year program, either as requirements or electives. Would it shock you to learn that, according to a Diabetes Care journal article in 1990, 20% of nursing faculty surveyed said that their students had 0 to 8 hours of clinical experience with diabetes patients during their education? (And most of those patients were over the age of 65?)

269548_4087We have a choice…

When we encounter someone (in the medical field or in public) who doesn’t understand what diabetes is or has a misperception of what we do every day, we have a choice. We can express incredulity at their lack of knowledge and become defensive about our disease, or… we can educate them. 

“The ER nurse didn’t know what a CGM is?”

Nope, because when she went to school, CGMs didn’t exist. And really, the majority of people with Type 1 diabetes don’t use (or don’t have access to use) a continuous glucose monitor. So, those who do use them are a subset of a subset of a large group of people with diabetes. A simple explanation of what a CGM does and how it helps you prevent hypoglycemic or hyperglycemic episodes can go a long way to not only educate that ER nurse, but perhaps create an ally or future advocate in the ER for diabetes.

“The optometrist asked you what your blood sugar was this morning?”

Yep, because even if you put that you’re Type 1 on your intake form, they don’t know how often you check. You can simply smile, explain that while you checked this morning, you’ve also checked twice (or six times!) since then. You can talk about the difference between Type 1 and Type 2 and that all people with diabetes can get the same eye complications. (Retinopathy and macular edema doesn’t discriminate between types.)

“The doctor wanted to take off your insulin pump in the hospital?”

If you’re wearing an insulin pump, you may know more about diabetes than that doctor. You can begin a dialog as to why the insulin pump needs to be removed. They may not understand the technology – and it’s up to you to explain that your pump supplies a basal rate and boluses when needed. However, if you’re in the hospital because of DKA or a severe hypoglycemic episode, the pump may be the issue. Have the conversation – a two-way conversation – and ask that your endocrinologist or a hospital endocrinologist be brought in to consult.

(Side note: That all being said, if you encounter an endo or a CDE who doesn’t understand the basic mechanics of diabetes, please run, do not walk, out of that office.)

When people say things that make you angry because it’s clear that they don’t understand diabetes, take a breath and remind yourself that you didn’t know much (if at all) about this disease before you were diagnosed. It’s frustrating when you encounter someone in the medical field who may not understand, especially because they are dealing with you. They just haven’t been taught. Yet.

Teach…

We can’t expect anyone to know, but we can expect everyone to learn. And if we want everyone to learn, then it’s up to us to be knowledgeable about diabetes and the devices that we use. We should be able to explain in simple terms and invite questions. We should be able to ask our own questions and be our own advocate. We should be able to smile and talk about the differences between types of diabetes and explain that there are more that the types have in common than separate them.

We won’t change the world overnight, but imagine if you could calmly explain the disease to someone and walk away knowing that they’re a little more knowledgeable about diabetes? Or give them websites so that they can learn more?

Sounds crazy, right?

Let’s be crazy.

 

 

 

0 comments
  1. I know you are right.

    But…

    It is sooooo annoying when the eye doctor/nurse not only asks what my person’s bg was seven hours ago, but also comments on that number with imaginary knowledge such as, “Oh, so he’s very well controlled then,” and I can then say, “Well, sometimes, but it changes all of the time,” and they say authoritatively, “That’s a very good number,” and then I just say “thank you.” It’s not the NOT knowing that annoys me, it’s the need/desire to pretend to know.

    People love people who frankly admit they don’t know things, but the urge to pretend to know is so strong!

    1. Perhaps we should develop pamphlets to hand out to those “pretend to know” people.
      I have ideas.
      None of them, however, are without snark. And I know you well enough that you’d just up the ante on the snark.

  2. We know the day-to-day, but I didn’t know Novolog had a “tail” of effectiveness until my endocrinologist told me. That was after I had to be visited by paramedics at work because my bg wouldn’t increase with sugar juice. We know the basics, enough to keep us alive usually. Who cares about the rest?

    1. That’s what a great endo/CDE is there for… And our peers who have good resources to share.

  3. Hmmm… this post makes me think. I know I’m better at what you describe than I used to be, but why do I feel like I never can enlighten enough? Maybe I should just aim for enlightening more than I did before. Positive gains. Thanks.

  4. Yes! *WE* are the experts (and we should be confident to stand firm with that knowledge). We can’t blame someone else for not knowing, just because they haven’t been taught. Two excellent points you brought up.

    And — if I may diverge for a moment — you can probably use terms like “basal” and “bolus” to any doctor, even one who doesn’t know diabetes, and they’ll understand. I remember when my wife was getting ready to give birth to our second child, her epidural had a basal rate programmed in the machine (more sophisticated than the “drip” she had with our first), and when she needed a little extra to kill the pain, the anesthesiologist delivered a bolus. Same terms, different medicine.

  5. Thank you so much for always guiding us to the positives. We live, love/hate, and battle the negatives so often that sometimes they win. I consider you my lighthouse; that constant beacon of light that leads me safely to the harbor. Thank you is inadequate for what you do.

  6. […] regarding diabetes is part of those 6,000 bills and resolutions each year. Just as I don’t expect medical professionals to understand every subtle nuance of diabetes technology, I don’t expect that my congressperson would be able to pull the diabetes bills currently on […]

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