Although diabetes affects 9.4 percent of the U.S. population, only a tenth of people with diabetes have type 1, according to the American Diabetes Association. Given that number, it’s not surprising that type 1 diabetes is often so misunderstood by the general population.
Nobody can debunk these type 1 diabetes misconceptions better than the people who live with the condition every day. Here are four truths that patients with type 1 diabetes want you to know.
Truth: Treating type 1 diabetes goes beyond limiting sweets.
“Most people, I think, in the general public think that diabetes is just a matter of not eating sugar,” says Riva Greenberg, who was diagnosed with type 1 diabetes at age 18. Eating simple carbohydrates (think white rice or pasta) can obviously impact blood glucose levels, but so can stress, menstrual periods, or being slightly less physically active than usual. In other words, managing blood sugar means putting careful consideration into your everyday actions—not just giving up soda.
“Really, the whole problem is [that] diabetes is managing blood sugar every day with everything that we do. High blood sugars can lead to all kinds of problems if we don’t manage them,” says Greenberg. Hyperglycemia, if unchecked, can lead to complications such as ketoacidosis, or “diabetic coma.” Learn how to deal with high and low blood sugar for diabetes here.
Truth: Every day is different.
The complexities of blood sugar management can catch you off guard from time to time. So many factors can impact blood glucose levels and you’ll need to stay on your toes.
“Every day is a new different set of circumstances that require a completely different approach,” says Liz Van Voorhis, who was diagnosed at age 15. “You think you’ve mastered it, and then something else is thrown your way.”
The American Diabetes Association recommends finding a community (online or in person) to connect yourself with other people who “get it” and can provide emotional support for the highs and lows of diabetes management.
Truth: Diabetes comes in different forms.
The three main forms of diabetes are type 1 diabetes, type 2 diabetes, and gestational diabetes, but even among the three diagnoses, patients may have unique and varying symptoms and treatments. “Diabetes comes in many different flavors,” says Craig Kasper, who was diagnosed at age 27. “There are actually many different potential causes of diabetes.”
“Type 1, like I have, [means] my body doesn’t make any insulin,” says Greenberg. “I have to take insulin; it’s the only thing I can take. Type 2 diabetes is what we see with most people [with diabetes]. They usually start on pills and a lot of them will end up taking insulin as well.”
Learn more about the difference between type 1 and type 2 diabetes here.
Truth: Diabetes doesn’t have to hold you back.
“It’s not something that should necessarily hold us back from doing things,” says Kasper. “I try every year to take on challenges just to prove to myself and to prove to everybody around me that type 1 is not something that should hold us back.”