People’s experiences with healthcare providers can vary widely. When it comes to living with diabetes, many people expect that their healthcare providers, even if they’re not specialists, will be at least somewhat knowledgeable about their health condition. Many have found however, that while endocrinologists and diabetes education specialists tend to be more attuned to the ins and outs of diabetes management, even their knowledge can be outdated, while the knowledge of other providers, is sometimes starkly lacking.

Meanwhile, two informal polls in two separate diabetes social media groups, highlighted that over 85% of people with diabetes expect any healthcare provider (even if not a diabetes specialist) to have a basic working understanding of diabetes, at the very least the two major types and general treatment options.

Nevertheless, when the asked to share their own experiences, many reported a lot of confusion and uneducated statements about diabetes from various healthcare providers. The consensus during the crowdsourcing research tended to be “while we expect it, we do not routinely see it.”

We asked people to share some of the comments that they received about diabetes from healthcare providers. Here are some surprising responses and stories to ponder:

“When did you have your insulin pump surgery?”

“Type 1 diabetes develops over 2-3 days, not months.”

“He was a big baby so clearly he’s was a diabetic when he came out.”

“You will kill your child with this low carb nonsense… I will not stand by and watch you do that… I’m sure one of the other doctors will call CPS with this.”

“Diabetics like you are only allowed 4 eggs a week. Period.”

“You should eat more carbs, it’ll stabilize your blood sugars.”

“Do not correct under 13 mmol/L [~234 mg/dL].”

“You need to eat a minimum of 45 g carbs per meal.”

“If you don’t like seeing high fasting blood sugar numbers in the morning, don’t test your blood sugar then.”

“You will likely be dead from diabetes by age 30. If by some miracle you are still alive, you will be blind, on kidney dialysis, and in a wheelchair due to amputations.”

“Are you sure you have type 1?”

“It’s probably best if you stop sports and strenuous exercise.”

“If you go low-carb, you’re going to kill yourself.”

“An A1c below 6.5 is dangerous.”

“You don’t have to bolus for corn or peas, they are freebies.”

“Your insides are destroyed from having diabetes so long.”

One woman shared the following story:

“When my daughter was diagnosed at age 2 (I had diagnosed her and had to fight with her pediatrician to test her blood, because her urine test was normal. We already ate low-carb, so I had to feed her a high-carb meal and take her back and storm the pediatrician’s office and force them to give her a test, which came back at around 500, at which point they finally sent us to the ER). After diagnosis, the endo told us she needed at least 100 g carbs for each meal (at age 2!!!), plus 30–50 g snacks in between meals. Insanity! They had her on massive amounts of Lantus, NPH, and Novolog. They told me to feed her lots of ice cream before bed every night to hold her steady at around 200, which was a great night-time number for a kid that age! I swear I still have PTSD from that whole experience! Nightmare! I had to fight with them every step of the way!”

Such stories amassed very quickly, with many nodding their heads at having similar experiences. Is there perhaps a gap in basic diabetes education, in particular for non-specialists?

Image credit: Haidee Merritt. Republished with permission. Please visit her Etsy store for more original work and gifts. 

Almost all will likely agree – while we cannot expect every healthcare provider to be fully attuned to the latest developments in diabetes diagnostics and treatment, an accurate knowledge of the basics should be a requirement – especially with the high number of diabetes diagnoses, and undiagnosed or misdiagnosed patients.

Moreover, ensuring better understanding of diabetes and its management across the board, for all providers, is highly likely to improve patient outcomes in various situations, including recovery from illness and surgery, and more effective prevention of numerous diabetes-associated complications.

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What are your thoughts on this issue? Have you ever had a surprising conversation about diabetes with a healthcare provider?

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Read more about A1c, diabetes diagnosis, diabetes management, exercise, healthcare team, insulin, insulin pumps, Intensive management, Lantus, low-carb diet, NovoLog.