Not all diabetes is created equal. Only about 5 percent of people with diabetes have type 1 diabetes, according to the American Diabetes Association. This means that 95 percent of people living with diabetes have type 2.

While the two conditions are often lumped together, they are very different. Type 1 diabetes is usually diagnosed in children and young adults and was previously known as juvenile diabetes. It is an autoimmune disease where the body’s immune system attacks the cells in the pancreas that produce insulin.

Type 2 diabetes is when your body is insulin resistant, and it generally occurs later in life and is more closely tied with metabolic syndrome and lifestyle factors, according to the National Institute of Diabetes and Digestive and Kidney Diseases.

Nikki Sheriff, Julia Flaherty, Jewels Doskicz, and Chris Clement all have type 1 diabetes, and they shared their thoughts on what it is like living with type 1 in a type 2 world.

Are people with type 1 forgotten?

Nikki: I do feel like type 1 diabetics get forgotten in the sense that we are grouped together with type 2 diabetics. People who don't understand diabetes assume we are all the same, including type 2 diabetics. I feel like in my experience, it's only us with type 1 and the people closest to us that truly understand the difference.

Julia: Type 1 can often appear to be secretive to the public, which is not exactly fair to those managing the condition, because this implies it should be hidden. However, for those managing it, we know how identifiable the symptoms are, how brutal the randomness of the disease is, and how obnoxious the attention it requires is. People with type 1 often get put into a corner because of the lack of awareness in our communities.

Jewels: Well, first, you have to consider this: Is there a “better” kind of diabetes? Um, no. Would I rather have used my odds to win the lottery instead of having myself and my daughter diagnosed with type 1? Yes.

Chris: The problem that the type 1 community runs into is that our diabetes is not the same as type 2. I believe type 2 gets a very unfair narrative. They didn’t ask for their diabetes any more than we did. But, it is a different diabetes. Type 1 is an autoimmune disease. I don’t think I feel overlooked or forgotten, because the type 1 diabetes community seems to be much louder than the type 2 community. While there are some very powerful and heroic advocates with type 2, I see far more diabetes advocates with type 1. 

Is it more difficult to manage type 1?

Nikki: I think it can be harder for type 1 diabetics [because they have] to deal with insulin and more extreme fluctuations with blood glucose levels. But it may be harder for type 2s, having more to deal with in their diets. 

Julia: I don't think the conditions should be compared as often as they are. They are very different in terms of treatment and management. While I cannot speak for those managing type 2 diabetes, I can say that managing type 1 is a burden, but you have to realize its blessings. Type 1 taught me independence, responsibility, and determination at a very young age.

Jewels: Over the past 30 years, I’ve found defining my diagnosis to be a fairly straightforward process. With a modified explanation, I move along, educating when necessary and ignoring when needed. As a nurse, and as a human being, I’ve learned that everyone is always shouldering something. Others’ burdens may not be as visible as type 1, but they have burdens nonetheless.

Chris: Diabetes is difficult to manage for anybody, and many people with type 2 have just as hard of a time because they might require insulin or have complications that make it difficult to manage with diet and exercise, by no fault of their own. But if you take a look at day-to-day diabetes management, type 1 does come with additional tasks and risks of mortality. We often have to watch [our blood sugar] more closely and take greater caution. We can be affected so quickly by the slightest miscalculation of an insulin dose. Additionally, we do require more expensive treatments by default that most people with type 2 diabetes don’t have to worry about. 

Is there a lack of information available about type 1?

Nikki: There seems to be more information displayed everywhere for type 2, but I haven't felt like there is a lack of information for type 1. It just requires a little more digging and research and a bit more effort. But I do feel like it's available with the right sources.

Julia: That is a major question among people with type 1 diabetes—whose job is it to bring awareness? The "stupid simple" answer is everyone and no one. We are responsible for the lives we live. It's as easy as that. People with type 1 are not responsible for having it, though it is a common misconception. They are responsible for their management, but they have to make the conscious choices to do so. A hundred years ago, I would not have lived as long. I wouldn't have any options. Today, I have options. I choose to live positively, manage the condition daily, and continue to advocate for a cure. The type 1 community is lucky to have formed such great bonds on the web to deliver these important messages.

Jewels: The finger pointing, blaming, and shaming that I see with type 2 is disagreeable, and it’s a ridiculous tactic to take with any disease. All diabetes types have their nuances, frustrations, and ramifications. I vote for disease camaraderie instead. Trying to figure out the cause of your type 1, and whether or not it was in your control, doesn’t help. Also, labeling ourselves as an unlucky minority gets us nowhere in our disease community.

Chris: It’s possible that I just don’t pay as close attention to type-2-specific research because it doesn’t affect me as directly. I do know there are studies and developments specific to type 2, which is very important, but there is no shortage of research for type 1. Informationally, I do think there is more on type 2, being the majority diabetes type. At times it is difficult to realize because type 2 is often just described as “diabetes,” while type 1 is usually specified, at least when information is well-written.

Thoughts from CDEs

While she doesn’t have type 1 diabetes, Rachel Head, RD, CDE, has unique insights into the struggles many people with type 1 endure, especially as the diabetes program manager for the Phoenix Children’s hospital.

“A lot of it boils down to simply being frustrated with a widespread lack of awareness,” she said. “Having to correct misinformation and make critical distinctions about your condition on a near daily basis is marginalizing enough.”

Head agreed that, up until recently, research and information for type 1 had been lacking.

“The sheer number of people affected by type 2 diabetes has historically driven much of diabetes-focused research,” she noted. “There has recently been an upsurge in promising data collection and research specifically for the type 1 community, thanks to several initiatives, such as the T1D Exchange Network.”

Beverly Adler, PhD, CDE, has type 1 diabetes, and she says, “Comparing type 1 and type 2 is like comparing apples and oranges.” She explains that type 1 diabetes is when the body is insulin deficient, whereas type 2 diabetes means that the body is insulin resistant.

She also has two suggestions for how to cope with the frustration of living with type 1 in a type 2 world. “I choose to educate the uneducated masses who speak out of ignorance, not out of malice,” she says. “And laughing at the dumb things people say is a healthy coping strategy.”

What are your thoughts on the differences between living with type 1 or type 2 diabetes? Share your thoughts by commenting below.