Words make a difference when managing diabetes, especially when people with diabetes start to believe the negative words they hear about themselves and their disease. Alan M. Delamater, PhD, recognized the connection in a 1988 paper on the social demand experienced by adolescents with type 1 diabetes when writing self-monitored blood glucose reports.
“We all saw the handwritten blood glucose logbooks kids brought into the clinic that nobody believed had any truth in them,” said Dr. Delamater, Professor of Psychology and Director of Clinical Psychology at the Mailman Center for Child Development, University of Miami Miller School of Medicine. “It was a setup for learned helplessness. And we found relationships between learned helplessness and poor glycemic control.”
Dr. Delamater recounted his journey of discovery over 40 years of behavioral diabetes research during the annual Richard R. Rubin Award Lecture on Saturday, June 4. His award lecture opened the symposium Stigma in Diabetes Care—Evidence and Solutions and set the stage for an in-depth discussion on the psychology of diabetes. The session was livestreamed and can be viewed on-demand by registered meeting participants at ADA2022.org. If you haven’t registered for the 82nd Scientific Sessions, register today to access the valuable meeting content.
Two decades of research have sharpened the focus from broad psychosocial interventions to the very specific impact of stigma in diabetes outcomes.
“Diabetes, as a condition, has a pervasive image problem,” said Jane Speight, MSc, PhD, CPsychol, FBPsS, Professor and Chair of Behavioural and Social Research in Diabetes at Deakin University, Melbourne, Australia. “Many of the words we use every day in diabetes—failure, normal, noncompliant, adherence, diabetic, control, responsibility, unacceptable—are negative, judgmental, unrealistic, and harmful. We need to end the culture of shame, blame, and disrespect surrounding diabetes.”
Stigma has been studied extensively in HIV, obesity, mental health, epilepsy, and other conditions, Dr. Speight noted, but rarely in diabetes—until recently. Qualitative research found that 93% of people with type 1 diabetes and 84% of people with type 2 diabetes spontaneously reported stigmatization across multiple countries.
In 2020, the ADA joined diabetes organizations around the world calling for action to combat stigma in diabetes. Calls to action are a good start, Dr. Speight said, but more research is needed to better understand the mechanisms and impact of stigmatizing language and more campaigns are needed to combat stigma. She cited the Nobody Chooses Diabetes campaign from Diabetes Australia as another positive step in the battle against diabetes stigma.
“Words don’t just reflect reality, they create reality,” she said. “It’s impossible to make progress without dealing with the stigma attached to diabetes.”
Stigma about weight can also affect people with diabetes. Like diabetes stigma, weight stigma is based in large part on misplaced assumptions of personal responsibility, moral judgment, and blame.
“There’s the misperception that weight is entirely within one’s control,” explained Rebecca L. Pearl, PhD, Assistant Professor of Clinical and Health Psychology at the University of Florida. “To reduce weight to personal will power is a vast oversimplification.”
There are multiple levels of stigma, Dr. Pearl explained. Structural stigma is based on law, regulation, and policy, and is often conveyed and reinforced by media images. Interpersonal stigma is typified by teasing or bullying, and often by discrimination. Intrapersonal stigma is internalized stigma, often leading to lowered self-esteem.
“Stigma does not motivate people to be healthy. It has the opposite impact,” Dr. Pearl said. “Stigma is a form of chronic stress and increases the risk of chronic disease, including diabetes. With stigma, we see cortisol dysregulation, high allostatic load, and increased mortality. Individuals who score high on internalized stress are at a three-fold increased risk for metabolic syndrome.”
Some of the stigma affecting people with diabetes comes from clinicians themselves.
“There’s often a disconnect between what patients are willing to do when properly resourced and clinicians’ perceptions of what’s needed,” said Kevin Joiner, PhD, APRN, ANP-BC, CDCES, Assistant Professor of Health Behavior and Biological Sciences at the University of Michigan School of Nursing. “Clinicians need to focus on their language to communicate more effectively with patients and families.”
One key is to use language that is free of stigma, person-centered, strength-based, and that imparts hope, Dr. Joiner explained. Language that is neutral, nonjudgmental, and based on facts, actions, and patient physiology and biology can foster collaboration between patients and providers, he said. To that end, the University of Michigan nursing school is developing short training videos to help providers recognize stigmatizing language they probably don’t even realize they’re using. Early testing suggests the videos are well-accepted by clinicians and highly actionable.
“One of the most common words that can be changed is ‘diabetic,’” Dr. Joiner said. “‘Control,’ used as a noun, is another word to change.”
It’s also important to change the way many people with diabetes see themselves.
“Most people with diabetes don’t tell us they’re struggling with diabetes stigma. They talk about feeling judged, blamed, and shamed about their diabetes,” said Susan Jung Guzman, PhD, Director of Clinical Education at the Behavioral Diabetes Institute, San Diego. “They feel like they are being punished.”
People who feel the sting of stigma show more problematic self-management behavior, tend to have elevated A1C, higher diabetes distress and depressive symptoms, and more feelings of social isolation, Dr. Guzman said. Language is the primary culprit.
“It’s time to take the judgment out of diabetes,” she said. “The feelings of shame that come with our everyday language around diabetes can do great harm. We can’t destigmatize diabetes without addressing problematic words like ‘control.’ You can’t control diabetes. You manage it, you influence it.”