What We Gain When We Lose Stigma Around Diabetes Complications
Many people experience fear and frustration when talking about diabetes complications with providers. Hear from people with diabetes about their experiences – plus how to have more productive conversations with your healthcare team.
“You need to be compliant or you’re going to lose your limbs,” Jennifer Stanton’s endocrinologist warned her during a routine follow-up. “You’ve got kids, right? You need to get it together.”
Stanton, who lives in Jacksonville, Florida, was diagnosed with type 2 diabetes after a surprise week-long hospitalization with blood sugar over 800 mg/dL. Previously diagnosed with gestational diabetes in both of her two pregnancies, she knew a thing or two about “being compliant” and was working hard to manage her type 2 diabetes at the time.
There was just one problem: Stanton, who has now been living with diabetes for over 10 years, actually has type 1 diabetes, but was misdiagnosed due to assumptions based on her age and history.
“I was scared to death, and I was bawling,” said Stanton, reflecting on how the fear tactics her endocrinologist used made her feel. “I thought I was doing all the right things…it was like, ‘Oh my gosh, I’m going to die.’”
Christa Reed knows that feeling, too. She was diagnosed with type 2 diabetes and hypertensive heart disease in 2023.
As an avid hiker who photographs weddings in the wilderness of Minnesota, Reed stays active in both her professional and personal life. After Reed’s diagnosis, however, she was told by her healthcare team that she should quit hiking due to her risk of diabetes-related complications and was probed about how much cake and junk food she eats at the weddings she photographs.
Reed knows her family history and diagnoses mean she carries a greater risk of certain diabetes-related complications. However, the stigma she experienced made her fearful that she wouldn’t get the support she needed to manage her unique risks.
“I was just so afraid that nobody was going to believe that I love to hike and that I was active because I was overweight when I was diagnosed,” Reed said.
How we talk about diabetes-related complications matters
A recent study by diaTribe and diabetes market research firm dQ&A explored the conversations that people with diabetes have with their care teams around diabetes-related complications. It was clear that people with diabetes were experiencing a lot of fear, anxiety, and frustration in these interactions.
And when these complications signal a loss of normalcy or freedom for people, or when they are depicted as “end-stage,” it can make these feelings even worse. Some of the most distressing topics to discuss, such as eye, kidney, or limb-related conditions, are often portrayed this way.
Fear is a powerful motivator in some situations (like running away from a bear). However, fearful experiences when discussing complications associated with diabetes are often unhelpful. Research shows that fear tactics don't actually motivate behavior change, but instead lead to feelings of hopelessness and anxiety, lower self-esteem, and decreases in positive self-management behaviors.
Moving beyond the fear of complications
Removing the fear – as well as stigma – from conversations about diabetes and its related complications is essential to improving the lives of those living with these conditions, said Dr. Susan Guzman, director of clinical education and co-founder of the Behavioral Diabetes Institute in San Diego.
Leaving fear behind and focusing on specific steps to support the future, two themes discussed in dStigmatize’s latest language guide, are ways to help people feel respected and uplifted.
Better conversations can begin with making space for the fear and anxiety that naturally accompany a topic like complications. However, there are ways we can acknowledge fear and move through it, without making it worse.
“This is scary and it's okay to be scared,” Reed said of how she found the courage to navigate these difficult conversations. “But it's worth it to go through that fear and be able to discuss these things openly in order to keep on being able to live your life.”
From a professional perspective, Guzman recognized that historically fear has been used as a tool, but that as providers, there’s a need to move beyond it.
“Failure and fear is sort of the currency in diabetes,” Guzman said. “We need to move away from both those things.”
Instead of relying on scare tactics, she recommends focusing on the future while providing specific guidance that reduces risk factors and supports living well with or without diabetes-specific complications.
Planning for the future – and remembering to live in the present
Managing diabetes – and in this case, managing the risk of complications associated with diabetes – is a balancing act. Instead of just giving in to fear and uncertainty, Stanton makes space for it.
“It's important to acknowledge the things that could happen [with complications] so you know why it's important to stay on track,” Stanton said. She described that this train of thought has been helpful for her to be realistic about diabetes-related complications without dwelling on it.
In her case, it isn’t the fear that serves as a powerful motivator. What motivates Stanton is the why: why managing risk factors is important to her now and in the future. She described her friends, family, and children, as well as finding joy, as being the key motivators driving her diabetes management.
Reed felt similarly. “We need to be encouraged to also live our lives, not be told they're over because of the diagnosis. Our diagnosis can't occupy every second of our lives.”
Reed said pushing for advice on specific behaviors to help reduce her unique risk for complications has helped her manage her diabetes, improve her quality of life, and prevent fear from steering conversations about the future.
Getting real about complications without forcing undue fear upon people living with diabetes is entirely possible, Guzman added.
“We have to make room for both sides,” Guzman said. “It is hard, and there's a lot of loss involved. There can be a lot of challenges [associated with complications related to diabetes], but you can still have a fulfilling life.”
The bottom line: every conversation is an opportunity
Managing diabetes and taking precautions to reduce your chance of complications is innately stressful and challenging.
Some healthcare providers would even argue that reducing the risk of diabetes-related complications is ultimately the primary long-term goal of effective diabetes management.
Leaving fearful and stigmatizing language out of conversations about complications associated with diabetes transforms the care experience and facilitates better outcomes for people like Reed and Stanton.
Especially for frightening and loaded topics like the complications associated with diabetes, people deserve to feel seen, supported, and respected. After all, it's their future at stake and they deserve to live it.
“You're not dying with diabetes,” Stanton said, "You're living with it. So go live.”
Learn more about addressing diabetes stigma here: