Stigma and the Stories We Share
By Matthew Garza
One of the most powerful ways to change a person’s mind is to have a one-on-one conversation. By focusing on the power of storytelling, diaTribe encourages people to share their experiences as an effective tool to fight against stigma, stereotypes, and the harmful trap of the single story of diabetes.
Diabetes stigma is extremely pervasive and harmful. It exists everywhere, including within the family, school, workplace, and healthcare setting, and it prevents people from seeking care and managing their physical and mental health. In short, this type of stigma – the shame and self-blame that a person might feel for having diabetes – can be a major stumbling block for people trying to manage this condition.
The characteristics and degree of stigma don’t look the same for every person with diabetes. For instance, a person who takes insulin might feel isolated or judged for injecting insulin, taking a blood sugar reading, or wearing an insulin pump or continuous glucose monitor (CGM). For others, stigma may be associated with certain body types or weights. For parents, a sense of stigma might come in the form of assuming blame or perceiving the judgment of others for somehow “causing” their child’s diabetes. And women with gestational diabetes may experience stigma tied to their diagnosis: that they did something wrong or won’t be able to have a healthy pregnancy.
diaTribe believes that addressing these various forms of stigma is an essential missing element of effective and compassionate diabetes care. As a part of this work, we have created the Lightning Talks series, in which experts and community members come together to learn about diabetes stigma and the ways we can address it, and to share stories and personal experiences.
At last year’s Lightning Talks event, we learned about stigma – what causes it, what other movements have done to address it (such as those working on LGBTQ rights, mental health, or HIV/AIDS), and how it manifests itself in the diabetes community and in diabetes care – from five experts and advocates. This year we moved beyond simply learning, to attempting to do something to change it.
Over the past year, we identified a specific method of change, the transformative power of storytelling, as a starting place. Research shows that one-on-one conversations and education are among the most effective strategies to help shift people’s thinking and keep them from making assumptions that lead to stigma. Simply sharing personal stories from people with diabetes about what it’s really like to live with this condition can change the narrative on diabetes in America.
We didn’t come up with this idea on our own. We were inspired to use this strategy after listening to a famous Ted Talk by the author Chimamanda Ngozi Adichie, which we used as the foundation of this year’s program. By listening to Adichie describe the danger of a single story, we were inspired to create a tapestry of many stories by people with diabetes.
“The single story creates stereotypes,” Adichie said in her talk, “and the problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story.”
If you look at the portrayal of diabetes in our culture, it’s easy to see this concept manifested. Diabetes is often painted to be an individual’s problem that is caused by a lack of willpower, unhealthy eating, and inactivity. This single story of diabetes is one of blaming people for being lazy and unhealthy, without any regard for the huge number of uncontrollable factors that can cause diabetes. We encourage you to watch Adichie’s Ted Talk to understand the importance of eliminating the single story.
“Stories matter. Many stories matter,” she said. “Stories have been used to dispossess and to malign, but stories can also be used to empower and to humanize.”
Two of our Lightning Talk speakers, Eileen Opatut and Phyllisa Deroze, shared their stories of living with diabetes in this spirit. Opatut, a former senior vice president of programming for The Food Network, has been living with type 2 diabetes for several decades. Deroze, a blogger, researcher, and advocate in the diabetes community, is the founder of DiagnosedNotDefeated.com and Black Diabetic Info. She was first diagnosed with type 2 diabetes but has since discovered she actually has latent autoimmune diabetes in adults (or LADA).
These women shared their experiences, including their diagnoses, their journey with diabetes, and how they have navigated a world that tells them they are the cause of their condition. They also shared moments that allowed them to break free of the stigma that often felt oppressive.
Opatut, describing how her diabetes has progressed, said, “My body doesn’t produce insulin anymore. I have been on insulin for eight years. Is it because I didn’t take it with enough seriousness [when I was diagnosed]? Maybe, maybe not.”
But then she shared something that changed the way she thinks about her own diabetes. “During a casual lunch with my brother, my thin, athletic older brother, he took out some metformin,” she said. “He was diabetic too. And he had been too embarrassed to tell me. It was a big day because on that day, I could finally say to myself, ‘This isn’t my fault’… I could finally get to the business of educating myself and taking ownership of my diabetes.”
Deroze talked about the intense sadness, isolation, and shame that she felt upon being diagnosed. She said the “weight of diabetes stigma impacted [me] almost every single day.”
When she was diagnosed in 2011, she began blogging at diagnosednotdefeated.com from her hospital bed. For the next six years she blogged under an alias, embarrassed to identify herself. “The most devastating part about the weight of diabetes stigma is assuming that somehow I did this to myself,” Deroze said. “And that caused me to be silent.”
It took years for her to feel comfortable enough to change her story and write about herself under her own name. “I didn’t get over diabetes stigma. I pushed through it,” she said. “And because I pushed through it, and started sharing my stories, the most amazing things started happening.”
Opatut and Deroze’s stories resonated with many of the audience members, many of whom saw themselves in the experiences the speakers shared.
“I completely felt every word that they were saying,” said Julie Heverly, diaTribe’s director of institutional giving, who joined diaTribe’s Community Manager Cherise Shockley in the Community Sessions after the event. “I also went almost six years without really talking about my diabetes… So much of what was shared tonight, even though it wasn’t my exact story, hit very close to home. The stigma that we put on one person with diabetes affects every single person who is living with disease, whether they are a patient, a family member, or even a future person with diabetes.”
Heverly wasn’t alone. Renza Scibilia, a writer and the manager of Type 1 Diabetes and Communities at Diabetes Australia, and T’ara Smith, an advocate and the project manager of Beyond Type 2, also joined Shockley on the Community Sessions panel to share their thoughts.
“I don’t think we can ever hear enough stories about people living with diabetes,” said Scibilia. “Other people’s stories help make my diabetes make sense…When we hear other people’s stories, those feelings of isolation can disappear. Knowing that we are not alone is so powerful.”
Smith agreed. “[Phyllisa’s] story always blows me away, especially when she talks about having to blog under an alias for so long,” she said. “And I think that really goes into the shame and stigma that people with diabetes face. Her story in particular is one that I can relate to myself.”
Sharing your own personal story can have a huge impact. It means that other people with diabetes will see a person that understands their experience, who can help them realize they aren’t alone. And it means that people without diabetes will have a human face for this condition – one that talks back against the single story of diabetes they have been told repeatedly.
Sharing a personal story isn’t the only way to accomplish this, sharing real stories about others can be a similarly powerful tool, and one that friends, family members, and healthcare professionals can partake in.
“What we choose to reflect back to others, the stories we choose to share, can change the model of the world that people around us are constantly forming,” said David Lee Strasberg, CEO and creative director of the Lee Strasberg institute, who was the final Lightning Talk speaker of the event.
He shared tips on how to take stories that we hear and read, and share their core messages with others. He advised that before anyone shares someone else’s story, you need to truly listen to them and understand what they are saying. Getting permission to share someone’s story is also key, as is acknowledging the source of the story (when appropriate). Finally, “When we retell a story,” he said, “use love and understanding, not fear or anger. Having a whole community of strong, empathic, impassioned storytellers is maybe our greatest asset.”
We know from history that retelling stories can be just as powerful as sharing our own. At the height of the HIV/AIDS epidemic in 1987, the AIDS Memorial Quilt was displayed for the first time on the National Mall. Each panel of the quilt represented the story of a person lost to AIDS – a person unable to share their own story. And yet, their friends and family members were able to remember the lives of their loved ones, raise awareness about their fight against the deadly disease, and encourage the world to care about a group of people that so many had written off.
And so, diaTribe wants to encourage you to share your stories, and to share the stories of those with diabetes whom you love and care about. Only then can we dismantle the incomplete single story and create a tapestry of experiences that paint a more accurate picture of what living with diabetes is and can be.
And we want to hear those stories. Send us your story or the story of a loved one to [email protected] and make your voice heard.