Dear Media: The Way You Talk About Diabetes is Problematic

My son Peter was diagnosed with Type 1 Diabetes in 2013, just a few days short of his third birthday. Our family was caught completely by surprise. We knew very little about diabetes. I still remember the first question I asked my wife when she broke the news: Does he have Type 1 or Type 2?

Looking back over four years of experience, that question seems very naive. But, in the moment, we were just two uninitiated parents feeling our way in the dark during a moment of crisis. And we see now that confusion about the differences between Type 1 and Type 2 Diabetes is in fact the norm, not the exception.

That’s why it was so disappointing—and a bit distressing— to read a recent article originally published in the Monterey Herald attributed to Barbara Quinn, a registered dietitian and certified diabetes educator.

I want to assume positive intent; the article was an attempt to alert readers to the warning signs of diabetes and offer some common sense nutritional advice that really applies to nearly every human being. Unfortunately, this well-intended piece contributes to harmful, even deadly, confusion about diabetes. It isn’t the first to do so, and it won’t be the last, but it’s the one I’m going to use as an example today.

The confusion starts in the headline: A Lot Still to Learn About Diabetes.

Let’s begin there. Any article about diabetes has a responsibility to make sure the reader understands one critically important point: There are two primary types of diabetes, and they have very different causes and treatments.

Type 1 Diabetes is an autoimmune disease in which the pancreas stops producing insulin for reasons that have nothing to do with lifestyle or diet. There is no prevention. There is no cure. People with Type 1 Diabetes are insulin dependent for life. No exceptions.

People with Type 2 Diabetes are insulin-resistant and over time cannot produce sufficient insulin to maintain normal blood sugar levels. Insulin resistance is strongly linked to obesity and sedentary lifestyles. However, Type 2 Diabetes can also be hereditary and occur in relatively healthy people. And, on the subject of cajoling people to choose healthier foods, it has to be said that we do not all have equal access to the fresh vegetables recommended in the article.

The article never recovers from the opening misstep—the failure to clarify the differences between Type 1 and Type 2 Diabetes. After referring to diabetes generically in the headline, the focus switches briefly to Type 1 Diabetes, then returns to Type 2 Diabetes without properly signaling its narrative lane changes.

I’m not nitpicking. Neglecting to define and differentiate the two common types of diabetes is equivalent to writing about breast cancer and lung cancer without recognizing that the two cancers have different causes, complications, and treatments. More to the point, confusion about Type 1 and Type 2 Diabetes can have serious, real-world consequences.

In the weeks before Peter was diagnosed, my wife and I were in a state of semi-denial. We even entertained the idea that he was drinking and peeing a lot because he wanted to earn more M&Ms as a reward for using the toilet (he was potty training at the time). Reading this article during that period could easily have played into our self-delusion. Maybe if he eats more non-starchy vegetables, his condition will improve.

The first bullet in Quinn’s article does urge the reader not to miss the warning signs and alludes to scary complications. But our lives are full of warning signs, which do not always sound the alarm of immediate risk. How many of the 7 million people who unknowingly have some form of diabetes will grasp the full urgency of undiagnosed Type 1 Diabetes?

It’s reasonable to imagine that my wife and I, reading the same article in 2013, could have put off going to the doctor based on this logic: “let’s see if beans work.” In the meantime, Peter’s body would have continued to destroy itself. Without insulin to convert sugar into energy, his system would be ravaged by ketones, leading to a critically dangerous condition called diabetic ketoacidosis (DKA).

DKA is the leading cause of death in children with Type 1 Diabetes, and it is often the result of delayed and missed diagnoses. DKA is tragically prevalent already. Between 30% and 40% of children diagnosed with Type 1 Diabetes in the United States are in some state of DKA. (DKA can also be present in cases of Type 2 Diabetes.) Any literature that adds to the confusion about types of diabetes exacerbates this problem by unintentionally giving false hope and misleading information to people who might need immediate medical attention.

Framing diabetes as a generic disease also perpetuates unfair myths and stereotypes.

The idea that anyone would think that my son has Type 1 Diabetes because we gave him too many cupcakes in the first three years of his life is a punch to the gut. Children are often stigmatized by a diagnosis of Type 1 Diabetes and can feel a wrenching sense of guilt. Articles that do not set this record straight, while over-associating diabetes with diet and exercise, are a betrayal to the Type 1 and Type 2 communities.

When this misinformation enters the public record, it can influence public policy, too. It is not difficult to imagine a lawmaker minimizing a diabetes-related need for funding for school nurses or community health clinics because, well, those individuals should have eaten better.

I know my response to Quinn’s short article is not proportional. There is no way any writer could address all the nuances of diabetes in a few hundred words. But I believe there is always space to make several imperative points, among them: 1) there are multiple types of diabetes, and people need to understand the different signs and risks; 2) healthy eating is important, but if you or someone you care for has symptoms like weight loss, frequent urination, blurry vision, or extreme thirst, see a doctor immediately; and 3) Type 1 Diabetes is an autoimmune disease, our understanding of its causes are evolving, and there is a distinct lack of evidence connecting onset to diet and lifestyle.

Finally, it’s worth taking to heart the last line of Quinn’s article: Not everything you hear about diabetes is true.

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Thatcher Heldring is a freelance writer and author focused on Type 1 Diabetes, environmental education, and other issues related to children and health. He has also partnered with clients working on literacy, sustainable communities, youth leadership development, and health policy. Most recently he was the Director of Communications and Creative Services at IslandWood, the Seattle-based outdoor learning organization. He is also the author of four sports novels for young readers and the father of a six-year old T1D.

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