Mindy Bartleson was diagnosed with type 1 diabetes (T1D) 20 years ago and considers herself to be well-informed about this health condition.

She grew up attending diabetes camp, has worked for national diabetes organizations, and now works in healthcare as part of the communications team at Massachusetts General Hospital. She reads all she can and stays up to the moment on research and daily care.

So how does she feel about the pandemic, COVID-19, and diabetes?

In one word, she told DiabetesMine: “Confused.”

Bartleson is not alone. With shifting guidance, differing opinions, and a large dollop of social media angst, much of the diabetes community is flummoxed.

The root of this, experts say, may go even deeper than the often moment-to-moment shifts in what we understand about COVID-19. It may be linked to the fact that diabetes information as a whole has long been fraught with confusion.

In addition, people are now beginning to shift from home offices back to work spaces, from ordering out to perhaps visiting a restaurant, and the impending school year is just ahead. This is creating increased confusion, worry, and angst.

With conflicting news reports, people with diabetes have been unsure about almost everything related to COVID-19 — from whether medication hoarding was necessary to what kinds of diabetes complications might put them more in danger.

“First, patients were all about stockpiling insulin, hearing and fearing that the supply chain would break after hearing that on the news,” said Dr. Minisha Sood, assistant professor at Zucker School of Medicine and an endocrinologist at Lenox Hill Hospital in New York City.

“Next, the confusion over if they are immunocompromised or not came. Patients did not know if they were at higher risk to catch COVID-19, if they’d suffer more if they caught it, or both.”

As officials including the Centers for Disease Control and Prevention (CDC) learned more, they tweaked their answers. Information trickled out from the CDC indicating that people with type 2 were at elevated risk of suffering severe outcomes if they contract the virus, but people with T1D are at “possible” elevated risk.

In contrast, in April, a group of researchers published the hypothesis that people with T1D may be spared infection with the coronavirus, or may have milder symptoms if they develop COVID-19, due to an inherent immunity imbalance.

There’s also been conjecture that COVID-19 may trigger the onset of both type 1 and type 2 diabetes. But so far, the evidence on both of those assertions is inconclusive.

“All of this has absolutely confused patients,” said Sood.

“The way in which we disseminate diabetes information in the medical world is a challenge in looking at the numbers and statistics,” says Dr. Joshua Miller, medical director of diabetes care for Stony Brook Medicine and an assistant professor of endocrinology and metabolism at the facility’s New York campus.

Much of it comes down to a problem of properly tracking COVID-19 diagnoses in people with type 1, type 2, LADA, or any other kind of diabetes. For the most part, it’s left up to the front line medical workers treating the patients to keep proper records.

The system they typically use often notes only whether a person is insulin-dependent or not, with no other details. Of course, a patient taking insulin could be type 1 or type 2, with many other defining factors.

“I cannot tell you how many times in a clinical day I see the ‘IDDM’ code,” Miller said of the medical code for “insulin dependent diabetes.”

“That means nothing,” he said. “That’s the problem in coding and disseminating information [from the codes reported]. How do you correctly describe someone’s condition?”

Those front line workers are also under an understandable mountain of stress with a stream of severe cases to treat, which can make their reporting more challenging.

“In the context of an acute situation, it’s very difficult to get accurate information,” says Dr. Francesco Rubino, chair of metabolic and bariatric surgery at King’s College, London. “That’s why so much of the information is not clear.”

Dr. Jacqueline Lonier, endocrinologist and assistant professor of medicine at Columbia University Medical Center – Naomi Berrie Diabetes Center, agrees. “So much of the ambiguity and lack of clarity comes down to this: All the data we have is based on (medical) coding, and coding is not precise. As time has gone on, it actually has not gotten any better.”

It’s all very frustrating from the perspective of a patient just trying to stay informed. “Everyone (hospitals, diabetes organizations, medical groups) is trying to say something to give answers, and we all want answers,” said Bartleson. “But that’s adding to the confusion. I feel confused by the rush of information, when it is different information coming from many places.”

Dr. Sood in New York City had two patients recently who showed her just how much we still do not know for sure about this.

“I’m astonished by what I am seeing,” she said.

One was a 74-year-old with type 2 diabetes. He came in with a high A1C (9.5) and showing renal failure from COVID-19. In the ICU, she thought, this is the patient who will not recover well from this.

Another patient, a 30-year-old with type 1 who was fit, used “all the latest diabetes tools” and clocked in a very low A1C, so she assumed this person would recover quickly.

But the opposite happened, with the 74-year-old bouncing back well while the 30-year-old struggled mightily.

“The cases I’ve seen have not followed the notion that young people and those taking care of their diabetes would fare better than the older and not taking as close care,” she said. “In many cases, it’s just not happening that way.”

Bartleson believes that diabetes identity, which often leans toward the “I’m strong and I can do anything despite diabetes!” could lead people with diabetes to look for the most positive information and then make choices that might not yet be known to be in their best interest.

“Many of us have a negative connotation of ‘high risk.’ You know: ‘I don’t want to be associated with that. I’m strong.’” She says that people with diabetes have been conditioned to “push through” things, sometimes instead of stepping back and being more cautious.

She sees in her community, particularly among young adults and teens, a propensity to lean in on any data that claims they are not at high risk of severe outcomes.

“I am of the belief that we have a lot more to learn about COVID-19 and diabetes,” Stony Brook’s Dr. Miller said, echoing most medical professionals who agree that more data is needed before we can quantify risk and recovery paths for people with diabetes.

In London, Dr. Rubino is working with a team of doctors to build the “COVIDiab,” a registry gathering details from the front line not just on patients with existing diabetes, but those who present in diabetic ketoacidosis (DKA) and elevated blood sugars who have not been diagnosed before COVID-19. Already, 150 medical groups around the world have signed on, and he hopes to gather quality data for a more solid learning base.

But that will take time. What do we know now?

The one thing doctors all seem to agree on and have confidence in is this: the more you dig deep and take care of your diabetes, the better your outcome from COVID-19 should be.

“If your time in range (TIR) is greater than 70 percent, the outcomes with this disease tend to be better,” Miller said.

Endocrinologists across the board suggest this, urging people with all types of diabetes to double down on their daily care, much the way a pregnant woman with diabetes does at that time.

Sood notes that this is an especially challenging time in the world for anyone struggling with self-care.

“People are letting nutrition and sleep fall by the wayside. Now is not the time for that,” she said.

“It’s like preparing for a war. You need to get your body ready for that war to truly be ready to get through it well,” she added.

Dr. Bart Roep, professor and chair, department of diabetes immunology at City of Hope in California, is on the same page. He told DiabetesMine that “now is a good time” for people with diabetes to up their daily care and, with the approval of their medical team, add vitamins like vitamin D to their daily routine.

All people need more vitamin D, he said, and people of color, who process through their skin in a unique way, do even more so.

“Do your best now to get your blood sugars right and eat a healthy diet with food supplements,” he says. “Don’t forget why we call them vitamins: they’re vital.”

Columbia’s Lonier suggests that all people with diabetes take some time to review their sick day management plan, even if they think they know it well, “and make sure your blood sugars are as well-managed as possible. Don’t be more panicked, but be more aware.”

And do not, all agree, skip medical appointments or ignore symptoms because you think it’s nothing. Fast action can help.

So if we take all those precautions, are we safe? That’s the question we all want answered. But the answer for now remains murky.

“There is so much uncertainty as to what to do this fall,” Miller said. “We just don’t know. We don’t have the body of evidence, the literature, that says it is OK to send kids back to school. I’m getting questions left and right about that, about people going back to work who have diabetes or their spouse or child does.”

“What I can tell them is this: If you stay home and wear a mask, you won’t get COVID-19. This is irrefutable,” he says.

Of course, this means you need to be careful that others around you wear masks as well, especially if they enter your home. But the message of ensuring personal safety by following the guidelines is clear.

Bartleson said she hopes diabetes organizations do a better job explaining new COVID-19 information as it surfaces, and she hopes all people will remember to be humble to the virus.

“I do take all this to heart,” she said. “I worry people (with diabetes) will read a few things, lean on that ‘I’m strong!’ thing and not be as careful as they could be. I want people safe.”