Diabetes Stigma: Let's Flip the Script
By Matthew Garza
Diabetes stigma negatively impacts the emotional, social, and physical lives of people with diabetes. Here's how we can create a more supportive environment.
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?
At the European Association for the Study of Diabetes (EASD) conference in Hamburg, Germany, I was able to deliver a presentation as diaTribe’s senior program manager of dStigmatize on this very subject.
Unfortunately, we don’t have much research on interventions to reduce stigmatizing beliefs. However, as part of a larger symposium at EASD on a soon-to-be-published consensus statement on diabetes stigma, I spoke about recommendations for individuals and organizations on what we might be able to do today to slowly start reducing stigma and its impacts.
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 a person’s risk for diabetes and their ability to manage it.
There are a few ways that we can do this. The first is to change the language we use to talk about diabetes.
The Language Matters movement is a global movement that is doing exactly that. There are currently 15 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. While most of these guidelines include specific words and phrases that we want to use in place of current more stigmatizing options, there are also several more general recommendations as well. This includes choosing language that:
-
Is neutral, nonjudgmental, and based on facts, actions, or physiology/biology.
-
Is free from stigma and avoids words or phrases that indicate a value judgment or blame (good, bad, poor, normal, fail, control, 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 an accurate and positive representation of diabetes that counters the stereotypes and misinformation that are prevalent in our current media landscape.
The role of diabetes organizations, research, and governments
All of these different groups have a responsibility to take steps towards reducing stigma and supporting people with diabetes.
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. They also need to pass and enforce legislation that protects people with diabetes from discrimination. Advocates and allies need to make sure that they are calling on legislators to prioritize these protections.
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. Given the impact that healthcare professionals have on people with diabetes and the fact that most healthcare professionals also want to eliminate stigma and help the people in their practice, this is a crucial area where interventions are needed.
Training on stigma-free communication, consults, and environments, as well as education on empathic, person-centered care, are needed. To start making 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/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.
Be a vocal advocate and ally
As individuals, one of the most powerful things each person can do is to make our 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, there is one last thing that anyone can do to help end diabetes stigma. In early 2023, a team of 51 researchers, healthcare professionals, and diabetes advocates came together to review the scientific literature on stigma. This group established an international consensus with 49 statements of evidence and recommendations as well as a Pledge to End Diabetes Stigma that is under review for publication.
You can visit EndDiabetesStigma.org to learn more about the pledge and sign it. In doing so, anyone can join the global movement of over 2000 individuals and 200 organizations that are 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. Join us at diaTribe to be a part of this positive change and visit dStigmatize.org to learn more about this topic.
