Diabetes is one of the most widely misunderstood conditions around, which is surprising considering its widespread.

There are four main types of diabetes: type 1, type 2, prediabetes, and gestational diabetes. But there are many types of diabetes, including Maturity Onset Diabetes of the Young (MODY), Latent autoimmune diabetes in adults (LADA). There’s even a proposed term for Alzheimer’s disease because of the strong link between Alzheimer’s and blood glucose levels in the brain. Some experts suggest that there should be a Type 4 diabetes to describe cases of type 2 diabetes caused by aging rather than diet or genetics.

Unfortunately, these new discoveries haven’t hit the streets yet. In fact, the general public seems to be completely unaware that there is more than one type of diabetes. Add to that, some leading public health organizations aren’t helping to clear up the matter. 

NPR reports a 2016 National Health Interview Survey (NHIS) failed to ask respondents to clarify which type of diabetes they live with. 

“Comingling of the data, particularly from the leading national public health institute of the United States, perpetuates the myth that diabetes is one disease sharing a name, while the reality is that Type 1 and Type 2 diabetes are actually two different diseases in the diabetes family,” TD1 Exchange’s executive director Dana Ball and chief medical officer Dr. Henry Anhalt wrote in an open letter. 

More than 34 million people in the United States have diabetes, and 1 in 5 don’t know they have it. More than 88 million US adults—over a third—have prediabetes, and more than 84% of them don’t realize they have it. “

Lack of awareness from both patients and healthcare providers can play havoc with someone’s health. Many people are misdiagnosed with the wrong type of diabetes and struggle to manage their health and related issues of fear, confusion, and shame.

Healthline reports that research published in the journal Diabetologica in 2019 found evidence that more than one-third of adults over age 30 who receive an initial diagnosis of T2D may actually have T1D.

n a commentary about those research findings, Dr. Naveed Saleh wrote that “misdiagnosis… may persist even years later and lead to adverse health outcomes without proper treatment.”

Alicia Keys’ hit song, You Don’t Know My Name inspired this blog post.

I feel strongly that you can’t really be treated appropriately for your diabetes health unless your doctor knows who you are, starting with your name!

To me, it takes two to tango. It’s up to you to share personal information about yourself at your doctor’s appointments. How you feel physically, emotionally, and mentally is the starting point.  But opening up about your daily routines, habits, personal idenitity, feelings of loneliness, and social isolation can help your healthcare provider personalize your care.

It makes sense, right?

To provide the best care, your doctor must understand you and know what your life is like.

Sometimes this can feel uncomfortable.

Today, I know that sharing my sexual identity with my doctors is critical to my care. But that doesn’t negate that I  struggled with coming out to my doctors back in the late ’80s. Hopefully, my journey and Alicia Keys can inspire you to be open and honest with your doctor. It will help them to understand your medical conditions fully and recommend the best treatment choices for you.

Let’s not forget that knowing how to describe your symptoms accurately is helpful too.