Community Views: (Mis)Understanding Type 2 Diabetes

Living with type 2 diabetes (T2D) brings many challenges. You must navigate changes to your physical health. You also encounter the T2D stereotypes of others. It is frustrating how many misconceptions exist.

To learn more about the experience of community members, we turned to the Type2Diabetes.com Facebook page. We asked members to fill in the blank: "One thing I wish others understood about type 2 diabetes is ____."

In short, you said there are many learning opportunities for those who do not live with type 2 diabetes!

It affects each person differently

No 2 people experience T2D exactly the same. All bodies are unique. You respond in different ways to various foods or stimuli. Your numbers may spike for reasons that do not impact another person. You wish others did not equate your experience to other acquaintances.

"Not EVERY type 2 diabetic is the same."

"It affects everyone differently. My diabetes is stress-induced/genetic, not from bad eating and lack of exercise."

"Everyone's disease is individualized, so what works for you may not be effective for me. It will be a road of self-discovery."

Genetics play a role

One of the most common misconceptions is that type 2 diabetes is your fault. People assume you did not take proper care with diet and exercise. They imply your choices led to your diagnosis. Others lack awareness of the strong genetic component to T2D. You inherited the genes that predisposed you to the disease. Often, your family members also have T2D.^1,2

"That I didn't do this to myself. I have multiple factors that led to it, such as heredity and PCOS [polycystic ovary syndrome]."

"I didn't do this to myself – it's hereditary and progressive."

Weight is just 1 factor

One stereotype is only overweight people develop type 2 diabetes. People assume diet and poor nutrition are the only things responsible. You wish they understood this is not true. Many factors contribute to T2D. Factors that increase your risk include:³

• Age (over 45)
• Family members with T2D
• High blood pressure
• Being of Hispanic/Latino, Black, American Indian, Asian American, or Pacific Islander descent
• Having had gestational diabetes
• Low HDL cholesterol or high triglycerides

"Not everyone who has type 2 is or ever was overweight."

"So many people ask me, 'How do you have T2D? You're so skinny.'"

Meals require more planning

Eating now involves careful thought and planning. You can eat most things. However, balanced food choices are essential. Blood sugar levels must stay within a healthy range. Maintaining a strict eating schedule is vital for many of you. Skipping or delaying meals can impact your blood sugar. These requirements baffle those without T2D.⁴

"That you do not have to give everything up to keep your numbers in control. It is all about balance, exercise, medication/insulin, and hydration."

"I need to eat as scheduled, or I will not be okay."

"That it doesn't mean no carbs, no sugar, and boring foods!"

"That they don't understand it, so for crying out loud, stop making suggestions about what I should eat!"

Fatigue is common

Feeling tired is a common symptom of type 2 diabetes. Most often, feeling fatigued results from high or low blood sugar. This can happen around mealtimes. Checking blood sugar levels might show a correlation to exhaustion. Lifestyle and mental factors can also contribute. Diabetes and fatigue may feed off each other, making the other worse. You wish others understood how weary you feel. It is not being lazy or lacking willpower. Fatigue is part of diabetes.⁵

"Sometimes we don't feel very well and never know when it will happen."

"How tired I get."

"It makes you tired."

Thank you

We appreciate the way you engaged with this prompt. Feeling misunderstood with type 2 diabetes is frustrating. We hope you feel affirmed and know you are not alone.