“You must have eaten too much sugar growing up.”
“People get diabetes when they don’t take proper care of themselves.”
“How can you stick yourself with a needle every day? I could never do that.”
These are just a few of the kinds of stigmatizing comments people with diabetes hear throughout their lives. The sentiment hidden behind such comments label the person targeted as being “responsible for” their condition or “different” (and not in a good way).
However well-intentioned people may be, stigmatizing comments lead to feelings of blame, shame, and isolation that ultimately can undermine both the physical and mental health of the person these comments are aimed at.
The person being stigmatized can come to believe that they are less: Less disciplined. Less worthy. Less likely to succeed at managing their diabetes. Such beliefs lead to a downward spiral of depression and learned helplessness which undermines the person’s ability to keep up with the daily demands of managing diabetes. And it can, in turn, lead to more complications and worse health outcomes.
These serious consequences have led advocacy groups and individual advocates across the diabetes landscape actively take a stand against diabetes stigma. Their efforts go beyond raising awareness and changing the language used to include pursuing research and actually integrating these efforts into the Standards of Care for diabetes.
“I can remember people talking about feeling judged and blamed about different aspects of diabetes for as long as I’ve had the condition,” shared advocate Renza Scibilia in Australia. Also known by her blog name Diabetogenic in the Diabetes Online Community (DOC), Scibilia was diagnosed in 1998. She currently serves as Type 1 Diabetes and Communities Manager for Diabetes Australia.
She points out that in recent years, research has been published that “put some data and evidence to the anecdotal conversations people with diabetes have been having.”
One such study is based on a 2017 survey sent to 12,000 people living with diabetes aimed at quantitatively measuring their experiences of diabetes stigma. Results showed that “a majority of respondents with type 1 (76 percent) or type 2 (52 percent) diabetes reported that diabetes comes with stigma.” While the level of stigma perceived varied among subgroups (distinguished by diabetes type, whether using insulin, BMI, etc.) diabetes stigma was experienced by a significant number of people across the greater diabetes community.
A few years earlier another study, Social Stigma in Diabetes (2013), drew a direct line between the negative impact diabetes stigma has on psychological well being and the resulting “suboptimal clinical outcomes” for people with diabetes.
However, in their literature review the authors weren’t able to find any documented strategies aimed at reducing or coping specifically with diabetes stigma. Instead they pointed to the strategies they found for addressing general health-related stigma.
Diabetes advocates have leaned heavily into using education, protest and social marketing to counter diabetes stigma.
A number of educational campaigns have been launched around the world. Among the most impactful are Heads Up from Diabetes Australia and This is Diabetes from Diabetes UK. These campaigns portray how diabetes stigma plays out in social situations, at work, and in healthcare. More importantly, they put the viewer in the shoes of the person being stigmatized, to evoke empathy.
Raising awareness starts the process of undoing stigmatizing behavior. But oftentimes once awareness is raised the person is left wondering what to do instead.
Recently the San Francisco-based nonprofit diaTribe launched dStigmatize.org, a comprehensive collection of online materials about diabetes stigma, why it’s a problem, and what can be done to eliminate it.
The site features definitions, shared patient stories, and a host of resources including a list of relevant research and a downloadable language guide.
diaTribe has stated that addressing diabetes stigma is essential, but a missing element of diabetes care.
We asked Matthew Garza, managing editor and lead stigma associate at diaTribe, to expand on this idea.
“Over the past few years, diaTribe has sought to understand the complex diabetes ecosystem. Through conducting landscape research and convening key stakeholders to understand the root causes and most pressing challenges of the diabetes epidemic, we found that stigma cast a shadow over much of the landscape. It shows up virtually everywhere — in your healthcare professional’s office, in how diabetes is presented in the media, in how we interact with food systems, in public policy,” he says.
“We came to the collective realization that even with growing advancements and innovation in diabetes therapeutics and technology, diabetes stigma will continue to be a limiting factor if not addressed.”
Over the years diaTribe has routinely reported on diabetes stigma and hosted a number of panel discussions bringing together various perspectives from patient advocates, researchers, medical professionals, and industry representatives.
“Despite how pervasive stigma is and the increasing body of evidence on how it worsens health outcomes, we found that there was very little being done to address it. If diabetes stigma continues to go unnoticed, the negative effects associated with it will continue to compound,” Garza said. “Stigmatizing behavior is pervasive in diabetes across the globe and, so far, we’ve yet to find a way to eliminate it.”
The question is, what makes dStigmatize.org different than other campaigns launched to offset stigma in the past?
Garza says dStigma.org is unique in that it is the result of a long term effort and not a single, discrete educational campaign.
“We believe the best way to address stigma is by creating a culture of compassion that allows people with diabetes to be active partners in their care,” Garza explained.
“The first step is shifting away from a blame and shame mindset. We want to frame the conversation to be about why everyone should work towards and value good health. We all deserve access to things like high quality preventive healthcare, places to exercise, health affordable food choices, and personalized treatment plans. Shifting our mindset from individual blame and shame, to collective action towards better health creates the space to have more productive and compassionate conversations focused on treating diabetes by fixing systems, not just individual habits.”
Garza pointed to changing the language around diabetes as something everyone can do right now and that this will have lasting effects.
“We want to strive to use language that is people-centric, neutral, nonjudgmental, and based on facts, actions, or physiology/biology,” he said.
The belief is that this shift to a people-first approach empowers and motivates the individual to be(come) an active participant in their own healthcare.
Next we asked Garza what he sees as the next steps needed to eliminate diabetes stigma and how he sees dStigmatize.org evolving over time.
“One of [the first] steps includes funding and conducting research on the prevalence and impacts of stigma as well as interventions designed to address stigma in different populations, such as healthcare professionals and the general population,” he said.
“Another step includes developing specific initiatives to eliminate stigma that is perpetuated from healthcare professionals whether consciously or unconsciously. Finally, we believe that media advocacy will also be key — which means improving the many ways that people with diabetes are portrayed in media to be more accurate and less stigmatizing.”
As for dStigmatize.org itself, Garza says his team will continue to develop the site in response to new research and guidance and work to expand its audience beyond people who write or speak about diabetes professionally.
Immediately, diaTribe is working to collect and share real life stories of how people with diabetes experience and overcome stigma. You can submit your own stories via this Google form.
Of course, Garza acknowledges that there is still so much work to be done to fully address diabetes stigma.
Scibilia points out that it’s a win that diabetes stigma is now a topic regularly discussed at professional scientific conferences, and people with diabetes now freely call out stigma in the media. “Really moving the needle will take time,” she says, reminding us that “small steps are still steps.”
Our experts continually monitor the health and wellness space, and we update our articles when new information becomes available.
Apr 4, 2022
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“You must have eaten too much sugar growing up.”