Diabetes Stigma

Diabetes stigma refers to the negative social judgments, stereotypes, and prejudices that unfairly affect people with diabetes all over the world. It’s a huge issue that contributes to feelings of blame, shame, loneliness, anger, depression, and distress. However, a question that always comes up is, what can we do about it?

As a member of the expert panel that worked on an international consensus and Pledge to End Diabetes Stigma, as well as the Director of diaTribe’s dStigmatize Program, my co-authors and I have delivered a number of presentations at major diabetes conferences all over the world on this topic.

What is the International Consensus and the Pledge to End Diabetes Stigma?

In early 2024, our international group of 51 researchers, healthcare professionals, and diabetes advocates published “Bringing an end to diabetes stigma and discrimination: an international consensus statement on evidence and recommendations” in the Lancet Diabetes & Endocrinology to focus our efforts on this issue.

At the 2024 American Diabetes Association conference this year, some of the co-authors including professor Jane Speight, Dr. Susan Guzman, Dr. Mary de Groot, and Dr. Kevin Joine and I presented our findings from the consensus statement.

The consensus established 49 statements of evidence and recommendations highlighting what we currently know from the research. This included the prevalence of diabetes stigma, its effects on people with diabetes, and who is most likely to experience stigma.

It also included recommendations for researchers, healthcare professionals, organizations, governments, and individuals on how they can help us expand our knowledge of diabetes stigma and address it.

“My vision for the consensus is that it brings attention to the complex and pervasive issues of diabetes stigma and discrimination and galvanizes people and organizations from all parts of the community to take do their bit to bring an end to diabetes stigma,” said Speight.

How can we address diabetes stigma?

Unfortunately, we don’t have much research on interventions to reduce stigmatizing beliefs, yet. However, as part of a larger symposium at the European Association for the Study of Diabetes (EASD) conference in 2023, we presented recommendations for individuals and organizations to slowly start reducing stigma and its impacts building on our consensus work.

Change the narrative

Currently, there is a harmful and inaccurate social narrative surrounding diabetes. This narrative blames and shames people with diabetes for causing their disease and places the sole responsibility for “controlling” diabetes on the individual.

One of the most impactful things that individuals and organizations can do is replace this misinformed narrative with one that focuses on all of the genetic, biological, sociocultural, environmental, and behavioral factors that affect someone’s risk for diabetes and their ability to manage it.

“The way we talk about and with people with diabetes creates the context for how people experience diabetes,” said Guzman, director of clinical education at the Behavioral Diabetes Institute and a co-author of the international consensus. 

“Moving toward a more respectful, inclusive and supportive environment means replacing the commonly used messages that are often experienced as blaming and judgmental,” she said

The Language Matters movement is a global movement that is doing exactly that. There are currently 18 position statements and guidelines in a variety of languages including English, Spanish, German, Portuguese, Arabic, French, and more. At diaTribe, we also have our own dStigmatize Language Guidelines. 

Many of these statements include recommendations to choose languagethat:

• Is neutral, nonjudgmental, and based on facts, actions, and biology
• Is free from stigma and avoids words or phrases that indicate a value judgment or blame (like good, bad, poor, normal, fail, control, and adherence).
• Is strength-based, respectful, inclusive, and imparts hope
• Fosters collaboration between patients and providers
• Is person-centered

Whenever possible, always defer to the people with diabetes in your life when it comes to language choices.

In addition to changing the language we use, we also need to advocate for the media as well as creators of social media content and public health campaigns to create better portrayals of diabetes and what life with diabetes actually looks like. We need accurate positive representationsof diabetes that counter the stereotypes and misinformation that are prevalent in our current media landscape.

The role of diabetes organizations, researchers, and governments

“Stigma, as well as our ability to influence it, is ubiquitous, we all have a role to play in addressing it,” said de Groot, an associate professor at the Indiana University School of Medicine and co-author of the international consensus. 

“Whether we work in industry, healthcare, research, the media, or we simply care about someone with diabetes, awareness and modest shifts in the way we think, speak and act can have a positive and powerful impact,” she said.

Diabetes and health organizations play a key role in communicating and protecting the rights of people with diabetes. It’s important that these groups embed addressing stigma into their strategic plans. They should also advocate for, and support, people experiencing diabetes stigma and discrimination, advocate for policies and funding at the government level, and work to create better health and awareness campaigns that don’t stigmatize or use fear-based language and imagery.

Research on diabetes stigma has the potential to inform policy, support advocacy movements, and increase funding for diabetes solutions. However, more research is needed to accurately understand stigma, its impacts, and the interventions that might help reduce it. In addition, it’s up to researchers to follow Language Matters guidelines in their work and publications and make sure that their study tools don’t add to stigma.

Finally, governments need to support and fund diabetes-focused initiatives, research, and interventions. Unfortunately, diabetes stigma often acts as a barrier to this support. For example, Mick Mulvaney, former U.S. director of the Office of Management and Budget said in a forum in 2017, “that doesn’t mean we should take care of the person who sits at home, eats poorly, and gets diabetes.”

Because of this, it’s critical that advocates pressure politicians to pass and enforce legislation that protects people with diabetes from discrimination.

Addressing diabetes stigma in healthcare

People with diabetes have consistently reported in research that healthcare professionals and the healthcare system are key perpetrators of stigma. Even though many healthcare professionals are doing so much to help people with diabetes, there’s more work to be done.

Training on stigma-free communication, consults, and environments, as well as education on empathic, person-centered care, are needed. 

“Diabetes stigma in health care settings can disrupt effective communication between people with diabetes and healthcare professionals, which is a gateway to overcoming barriers to self-management,” said Joiner, assistant professor at the University of Michigan School of Nursing and co-author of the international consensus.

To start taking some first steps towards reducing stigma in these settings, healthcare professionals should:

• Integrate recommendations from the Language Matters movement into their practice.
• Be mindful of intent versus impact. While no one expects perfection, some things that are said or done with good intentions can still negatively impact people with diabetes and the goal should be to avoid this as often as possible.
• Avoid stigmatizing conversation “traps” such as trying to use fear-based messaging to inspire action, asking yes or no questions that don’t allow people with diabetes to share details about their lives and how they’re doing, or talking down to people with diabetes because healthcare professionals are the “experts.” Lived experience is equally as important as scientific or medical knowledge.
• Set up a stigma-free practice. Make sure seating and medical equipment are appropriate for people of all shapes and sizes. Avoid taking vitals – such as weight – in public areas where people may feel judged by others. Only measure a person’s weight if it’s required, and only share their weight if the person wishes to know it. Audit the office space for posters, pamphlets, and other materials that may include stigmatizing language and imagery.

Our dStigmatize Resource Library includes dozens of resources and videos aimed at educating and training healthcare professionals on ways they can reduce diabetes stigma in their practice.

Be a vocal advocate and ally

As individuals, one of the most powerful things each person can do is to make voices heard. For people with diabetes, speak up and correct misinformation and myths about diabetes wherever possible. Additionally, living your life out and proud as someone with diabetes can help make other people with diabetes feel less alone, and it can show those people in your life who don’t have diabetes understand what life with this condition actually looks like.

However, the burden of advocacy cannot only fall on the shoulders of the diabetes community. Managing life with this condition can be exhausting, and having to constantly explain oneself and fight for respect only exacerbates this. Therefore allies – friends, family members, colleagues, and peers – must speak up when they see instances of diabetes stigma and discrimination, while also helping contribute to lifting the voices of people with diabetes.

Take the Pledge to End Diabetes Stigma

Finally, we can all visit EndDiabetesStigma.org to learn more about the consensus and Pledge to End Diabetes Stigma and sign it. You can join the global movement of over 2,500 individuals and 300 organizations committed to addressing this issue and holding each other accountable.

Each person has the impact, influence, and power to make the world a more respectful and understanding place for people with diabetes. 

“​​I am hopeful that more people will become aware of the harm caused by the stigma of diabetes and do what they can to make a change,” said Guzman. “I know we can all do better.”

From www.diatribe.org

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