It’s Time to Address Diabetes Stigma
By Matthew Garza
Diabetes stigma is a huge public health problem that has been shown to lead to worse health outcomes. At the ADA 82nd Scientific Sessions, four leading experts in this field discuss the prevalence of stigma, interventions to address this issue, and what work still needs to be done.
What is diabetes stigma?
Diabetes stigma refers to the experiences of exclusion, rejection, prejudice, and blame that people with diabetes unfairly experience as a result of their condition.
Stigma can be internalized by people with diabetes in the form of self-stigma and shame, or it can come from outside sources such as the media, healthcare providers, or friends, family, and colleagues.
It magnifies social and economic health inequities and creates a barrier to seeking help from others and engaging with the healthcare system.
The research shows that diabetes stigma leads to worse self-esteem, depression, anxiety, diabetes distress, worse diabetes self-efficacy, worse diabetes self-management, and reduced engagement with healthcare providers.
Though the experiences of diabetes stigma can vary, Rebecca Pearl, assistant professor in Department of Clinical and Health Psychology at University of Florida, highlighted that there is a close relationship between diabetes and weight stigma. This is due to false assumptions that obesity – and diabetes – are a result of personal choices and that stigmatizing these conditions can promote better health.
“There is a concern that de-stigmatizing obesity means promoting obesity,” said Pearl, but she said this is incorrect. “Stigma does NOT motivate people to be healthy, it has the opposite effect and impacts health.”
How many people experience diabetes stigma?
Though the research is still limited, the experiences of stigma are well documented in people with diabetes. Nevertheless, Susan Guzman, clinical psychologist and director of Clinical Education and co-founder of the Behavioral Diabetes Institute, highlighted that in many cases (in research and in clinical care) people won't say that they feel stigma. More often, they express their feelings of shame, blame, and judgment from themselves and others.
“The words we hear [people] describe themselves as, over and over again… ‘bad diabetic,’ ‘a burden,’ and ‘broken.’ [Do those] sound familiar?” asked Guzman.
As many as four in five people with diabetes have had some experience of diabetes stigma.
One specific study showed that out of 1,227 people with type 2 diabetes in the US for example:
55% said that some people assume they could have prevented their diabetes
49% have experienced judgment for their food choices
49% hide their diabetes from others
19% have experienced discrimination in the workplace.
Guzman shared data that 65% of youth and teens with type 1, 76% of adults with type 1, and 83% of parents of children with type 1 have experienced stigma. And Pearl shared data linking weight and diabetes stigma. In a study of 1,212 adults with type 2 diabetes in the US, 53% reported experiencing stigma for their weight, and 44% reported feeling judged recently by a healthcare professional due to their weight.
These statistics highlight the dire need for ways to reduce or even eliminate stigma altogether.
Are there any ways that we can address stigma?
Pearl highlighted that there are opportunities for interventions at the structural, interpersonal, and intrapersonal levels of stigma.
Structural: enacting laws and policies aimed at reducing stigma and discrimination, setting clear media guidance for the portrayal of diabetes, and training those in positions of power on ways to reduce diabetes stigma.
Interpersonal: creating and promoting campaigns to reduce public diabetes stigma.
Intrapersonal: creating programs and resources that promote peer support and counseling to reduce self-stigma, isolation, and shame.
“Evidence shows that stigma is key in generating and perpetuating health inequities,” said Dr. Kevin Joiner, assistant professor of health behavior and biological sciences at the University of Michigan School of Nursing.
Joiner elaborated on a specific intervention that his team at the nursing school is employing. His study aimed to develop a 12 minute video intervention for healthcare providers to raise awareness of diabetes stigma, and promote changes in the use of language that is person-centered and strengths-based.
They also hoped to seek the opinions of the healthcare providers in the study about their perceptions of the videos. Preliminary data from the study that included 19 participants showed that almost 80% of them felt like the video helped them understand that there is stigmatizing language, almost 70% felt that the video gave them a new way of thinking about stigmatizing language, and over 80% planned to use the information they learned.
Common themes that arose in interviews conducted with the participants highlighted that they felt like they understand the personal experience of diabetes and its associated stigma better, that they more clearly understood the important aspects of the patient-provider relationship, and that the video helped cultivate awareness around stigma.
What work still needs to be done?
There’s a lot that we don’t understand about diabetes stigma and how it affects people with diabetes. There’s even less that we know about interventions that may be able to address stigma – whether that means targeting the self-stigma that people internalize or the perceptions and attitudes of other people (such as healthcare providers) towards people with diabetes.
Professor Jane Speight, foundation director of the Australian Centre for Behavioural Research in Diabetes, outlined several key things that still need to be done.
We need to make stigma a global priority and call for action. For example, the IDF and the ADA have both issued statements calling for the need to give stigma and discrimination greater attention.
We need more research on the impacts of social stigma, imagery and language, on interventions to reduce stigma, and on what translates across cultures and languages.
We need better campaigns focused on raising awareness around diabetes and diabetes stigma specifically. Some campaigns are doing a great job at being positive, accurately portraying the experiences of diabetes, and empowering people with diabetes such as the Heads Up on Diabetes & Stigma campaign from Diabetes Australia. However, many other campaigns contribute to stigma by employing the false assumption that fear promotes healthy behaviors which the research shows does more harm than good.
We need strategic plans to address stigma that are focused and clear.
We need to “change the conversation” around diabetes by promoting the #LanguageMatters movement. You can see a collection of Language Matters position statements on dStigmatize.org.
We need to improve clinical care. The way people are treated in a clinical setting matters. “Understanding and addressing stigma is a key element in improving health and the way people feel about diabetes, and the relationship they have with their clinicians,” said Speight.
We need advocacy efforts aimed at shining a light on diabetes stigma and promoting ways to address it. Speight highlighted one of diaTribe’s efforts in this space, dStigmatize.org, as an example of this sort of advocacy work.
Finally, it’s vital that we create a tapestry of stories that highlight the real-life experiences of living with diabetes. If you have diabetes and want to share your story of stigma, you can fill out this form to have your story shared on dStigmatize.org.