The Risks of Renaming Type 1 Diabetes and Why It Could Do More Harm Than Good

However, changing the name could have serious ramifications for people with all types of diabetes, and it’s not the answer to a larger systemic issue that has persisted in our culture for some time. Here’s why.

Why Some People Want to Change the Name of T1D

To understand why some T1D community members want to change the name, it’s important to understand what causes both diseases, particularly type 2 diabetes. 

A T2D diagnosis is about more than food choices alone. A T2D diagnosis, or prediabetes, can stem from genetics, lifestyle factors, socioeconomic conditions, food deserts, a lack of access to health resources, education, and support—you name it. Yet society has taught many people over the years that people with T2D alone are to blame. 

T2D is usually associated with larger bodies and obesity, but that’s not always the case. Even when it is, all bodies deserve love and support. Bigger bodies used to be a sign of wealth in the past—they showed you could afford sustenance. 

People with T2D are often the butt of the joke, but they aren’t always explicitly labeled that way, which has inadvertently upset people with type 1 diabetes who don’t want to be grouped under a lifestyle umbrella. But lifestyle choices aren’t the sole factor that leads to T2D either, and even when they are a part of the diagnosis, people with T2D deserve support, not judgment.

There is a significant misunderstanding among the general population that if you live with any form of diabetes, you are overweight and at fault.

But that’s simply not true, and it’s fueled by fat phobia that has returned with the uptick in GLP-1 use among celebrities and everyday people as of late.

Shame Motivates and Serves No One

Even when lifestyle factors are at play, the data is clear—shame motivates no one and serves no one. Even when shame inspires change, it often stems from a negative space that undermines self-esteem and confidence. Grace and accountability can coexist, but in online spaces, it often looks like judgment devoid of compassion. It’s not always there, in the comment section.

Ego is a parasite of online culture—a lot of folks just want to be right and not hear each other out. But we were meant to converse, not shut each other down, even when opinions are divided. The social media divide continues to widen across cultural spheres. Unfortunately, this often happens between people with T1D and T2D.

It’s why people who were originally misdiagnosed with T2D but are actually living with T1D or Latent Autoimmune Disease in Adults (LADA) feel ostracized by communities that are supposed to be inclusive. 

Ultimately, we are all part of one community. Yes, we have key differences, but recognizing our similarities can help foster community. It’s important to acknowledge the differences between the conditions while removing emotion from the discussion. 

We can be different without being divided. 

Perception creates reality, but science taps us on the shoulder, asking us to look deeper.

Key Differences and Similarities Between T1D and T2D

To be clear, this explainer doesn’t seek to lump T1D and T2D together, but rather to keep them under the same disease-state category for several important reasons outlined later in this article. 

The Cleveland Clinic best describes the key likenesses and variations between type 1 and type 2 diabetes. 

T1D & T2D Differences and Similarities Explained

• If you live in a body with T1D, you do not produce insulin.
• If you live in a body with T2D, you do not use insulin properly.
• Some people with T2D require insulin, whereas all people with T1D do. This is why you sometimes hear the term “insulin-dependent” diabetes.
• T1D is an autoimmune condition, while T2D is classified as a hormonal condition.
• T1D occurs when your immune system mistakenly treats insulin-producing cells as invaders and destroys them. 
• T2D happens when the cells in your liver, muscles, and fat tissue stop responding to insulin properly—they become insulin-resistant.
• In both conditions, it’s important to make healthy lifestyle changes around movement and nutrition to support stable blood sugar levels.
• Hormones impact both conditions.
• Stress management is important with both conditions as well.
• There is currently no cure for T1D, though progress is being made all the time, and the outlook is hopeful for a near-future cure.
• T2D also cannot be cured, but it can be managed without blood-sugar-lowering medications or insulin when lifestyle changes are properly implemented—this is called remission. In this case, the body still has T2D, but it no longer needs support from these other factors. Follow-ups are still required because remission is an ongoing state.

Beyond Type 2 explains that for people with T2D, “even while experiencing remission, diabetes complications such as retinopathy, nephropathy (chronic kidney disease), neuropathy, and cardiovascular disease can occur.”

Surely, if you live with T1D, the idea of being able to get off insulin through lifestyle changes can feel like a dream. Understandably so. Still, people with T2D aren’t to blame for it, and they didn’t cause it themselves. No one asks for any type of diabetes.

Type 2 Diabetes: The Symptom of a Larger Issue

T2D is influenced by a complex mix of social, economic, and environmental factors that have evolved over decades, including the widespread availability and affordability of highly processed foods. Researchers have found that many ultra-processed foods are engineered to be highly palatable, which may contribute to overeating and increased metabolic disease risk. 

Public health experts have also raised concerns about gaps in nutrition education within many U.S. school systems, arguing that limited access to foundational health and nutrition literacy may affect long-term well-being across the general population, including people at risk for or living with T2D.

There may be a direct correlation between health literacy and T2D in American culture.

Recent Studies Show the Following Impacts and Correlations

• Prevalence Disparities: Adults with less than a high school education had a T2D prevalence rate of 12.7%, compared to 7.0% among those with education beyond high school.‍
• Risk Mitigation: More years of schooling are a protective factor against T2D (odds ratio = 0.39), likely by mitigating risk factors such as obesity, high blood pressure, and lack of exercise.‍
• Impact of Limited Education: Low education level is associated with a 23% higher prevalence of diabetes and higher rates of diabetes-related complications.‍
• School Environment: The prevalence of T2D in American youth has nearly doubled over the past two decades.

How Changing the Name of T1D Could Hurt All People with Diabetes

So, how does this all relate to how changing the name of T1D completely could hurt people with all types of diabetes? 

It Could Do So in a Few Key Ways

1. Changing the name of T1D could worsen misdiagnoses.
   Misdiagnoses are common in adults, especially those with larger bodies. Adults with T1D are often misdiagnosed with T2D, leading to years of severe complications and challenges. Categorizing T1D and T2D separately could slow diagnosis and treatment, potentially resulting in worse health outcomes or premature death. 
   Misdiagnosis of T1D, T2D, LADA, MODY, and other forms is frequent. Introducing a separate disease name might complicate education, insurance coding, emergency care, awareness, research, and screening efforts.
2. It could reinforce the idea that some forms of diabetes deserve more empathy than others.
   Renaming T1D could unintentionally solidify the notion that T2D is the “bad type of diabetes” that “you cause yourself.” This assumption is medically inaccurate and socially harmful. It could reinforce dangerous stigmas that all T2D cases are tied to weight and lifestyle, which could worsen access to medical care and peer support.
3. “Diabetes” is an umbrella term used across medical, insurance, legislative, and educational systems.
   T1D and T2D fall under this category because they both impair endocrine function. Removing these types of diabetes from this umbrella category could have unintended consequences, introducing confusion in emergencies, medical coding, insurance coverage, school accommodations, advocacy campaigns, and public health education.
   

Dividing identities could weaken collective advocacy. 

We are stronger when we stand together on issues, not apart. We are not each other’s enemies. Both disease categories deserve research funding, insulin affordability, access to medical devices, healthcare protection, and public awareness.

What’s the Why Behind the Why?

While it’s understandable that many people with T1D are exhausted from having to explain, we must dig deeper. We must ask, “What’s the why behind the why?” And it’s about understanding. That’s commonly observed when conversations like this brew up on social media.

The understanding we seek as a T1D community won’t come from separation. We must be the example we want the general public to grasp. We must stand united with people with T2D, not by merging our diseases, but by acknowledging both differences and similarities and by supporting and showing compassion for one another.

Yes, we require different things. Yes, T1D is more emergent and urgent at diagnosis and during treatment. But people with T2D don’t need distance. They need encouragement from all. Not because we owe it to them, but because it’s the decent, human thing to do.

People with all types of diabetes deserve accurate care, respect, compassion, and human decency in all the spaces they exist.

Public Understanding Needs to Change, Not the Name of T1D

On the surface, the argument to change the name of T1D makes emotional sense. But changing the name wouldn’t magically fix public ignorance. Instead, it would likely create more public confusion. Trying to escape stigma by distancing yourself from another stigmatized group often strengthens the stigma itself. The problem is decades of poor public health education.

To fix the problems we seek to correct, we must improve public understanding of the following. 

• Type 1 is autoimmune
• Type 2 is complex and multifactorial
• All forms of diabetes deserve compassion and competent care

Diseases don’t become less stigmatized because we rename them whenever a misunderstanding arises. Stigma shrinks when education expands.