Stigma and the Stories We Share

This content originally appeared on diaTribe. Republished with permission.

By Matthew Garza

Matthew Garza joined the diaTribe Foundation in 2020 after graduating from Johns Hopkins University with a degree in Biomedical Engineering. Garza is the Managing Editor of diaTribe Learn.

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.

Lightning

Image source: wittmannstudios

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.”

Lightning

Image source: wittmannstudios

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.

Lightning

Image source: wittmannstudios

“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.

Image source: wittmannstudios

“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 stigma@diaTribe.org and make your voice heard.

Source: diabetesdaily.com

Food, Culture and Diabetes

This content originally appeared on Beyond Type 1. Republished with permission.

By Beyond Type 1 Editorial Team

During September Summits, Beyond Type 1 sat down with a panel of experts and community members to discuss food, culture, and diabetes. This panel provided insight into both the type 1 and type 2 communities, including navigating stereotypes related to food, and allowed for some truly passionate foodies to share their best tips and tricks. Watch the discussion in full!



Speakers included:

  • T’ara Smith, who moderated this discussion, is the project manager of Beyond Type 2 and lives with LADA diabetes, a form of type 1
  • Lorena Drago, MS, RDN, CDN, CDE, a registered dietician, nutritionist, and certified Diabetes Care and Education Specialist, who focuses on diabetes education and cultural competency
  • Mila Clarke Buckley, also known as The Hangry Woman, a food blogger and author, who also lives with LADA diabetes
  • Eritrea Mussa Khan, who was diagnosed with type 1 diabetes in 2001 and creates content for Diabetics Doing Things
  • Robert Lewis, also known as The Happy Diabetic, a chef, who lives with type 2 diabetes

Partial transcript below, edited for content and clarity.

What do you love about food? How has diabetes impacted what you eat, if at all?

Mila: Food is a fun way to be experimental. It’s the way to nourish your body and to show love to people. That’s what I always love about food and cooking. I get to use my creativity in the kitchen to get people to explore new things. Overall, food is very central to my life, it always has been. My family is Jamaican, all of our holidays and all of our gatherings really center around food. Getting diagnosed with diabetes really changed a lot of the ways that I looked at food and thought about food and what I decided to eat. Having a new perspective about what food means to me and how I measure my blood sugar with it and figuring out how I can take care of my overall health, that’s been a really interesting journey.

Eritrea: In all of my cultures, food is so central. It’s when you get together to express love with your family, not just once a year, but all of the time. It’s when your family stops whatever everybody is doing to get together and have a meal. It’s always been a really central part of my life. Food is amazing. I definitely enjoy being so multicultural because I get to eat all kinds of amazing food, from all kinds of amazing places.

Robert: I feel so good when I eat healthy. What I try to do is take ordinary ingredients and turn them into something extraordinary. So less sugar, less fat, less salt, more herbs and spices, fresh vegetables, lean proteins, and I just have fun experimenting with flavor combinations that make food pop… For me, food is just special, it’s personal and it’s comforting. For me, it’s all about delicious food from ordinary ingredients turned into something extraordinary.

Lorena: First of all, I love everything about food, from the most basic and primal aspects of foods, which is nourishment/survival to, I would say, most hedonistic aspect of good food, which is the aroma, the taste, and just the pleasure of good eating. Food also connects me to where I’m from – I am from the Caribbean coast of Colombia. Food is about history, it’s about geography and people. It connects us as a culture. In that part of Colombia, the history comes from Spain and Portugal, we have Middle Eastern influence, we also have African influence and indigenous influence. All that is part of who I am, as a person and as a nutritionist.

T’ara: I agree with everything that all of you said. I also have Jamaican in my family and I also have a southern heritage from South Carolina, so I feel pretty blessed to be enriched by these rich cultures that have such just amazing food, but also have a deep appreciation from where food comes. I’ve learned how to garden from both my mother and my grandfather… I love healthy food because I love the way it makes you feel inside. That’s how it’s impacted my life with diabetes as well.

Let’s talk about the things that make our cultural foods so great + how we work them into our diabetes management.

Eritrea: I have type 2 diabetes, but I also have celiac disease, so I’m allergic to gluten. Luckily for me in Mexican culture, we eat a lot of corn tortillas and I get to enjoy all the same foods that I typically would want to eat. If I was to eat Ethiopian food, which is Eritrean food, I wouldn’t necessarily be able to eat injera because it is so starchy and full of flour and I would be sick. But if I didn’t have celiac disease, I would just adjust and take insulin for that as usual. For me, it’s a little different because I have celiac so it’s hard sometimes, but most of the time I find myself still being able to participate in all of my cultural events, and all my cultural food and really enjoying it. There are certain things I have to cut out once in a while. I just replace it with other stuff. If I can’t have pita bread, I’ll have a slice of bell pepper with hummus, you know what I mean? You just replace it to make it work.

Robert: I grew up in a Jewish Home. There was a very diverse culture there of all kinds of interesting foods, it’s just always been so fun. I also live in the Midwest. Here in the Midwest, we have lots of farms, homegrown food, farmer markets, and lots of small crop farmers doing some amazing things with heirloom tomatoes. I’m fortunate because in my neck of the woods, we have some of the most amazing vegetables ever, and I just infuse those into my cooking.

Mila: Piggybacking on both of what you were saying Jamaican food is really interesting because it uses a lot of healthy methods of cooking. It uses a lot of bracing, and a lot of spices and grilling. I never really feel like I’m missing out. The portions are big because people love you, and they want to give you as much food as possible but instead of eating an entire three cups of rice with my jerk chicken or with my oxtail I know that I have to scale it back and understand how those portions can affect my blood sugar. Instead of restricting foods, or saying I can’t have this or I can’t eat this, it was how can I make my plate look a little different so that my blood sugar can adapt to what I still love, and I can still enjoy those things.

I also live in Houston, which is one of the most culturally diverse cities in America. I can walk outside of my house and literally have any kind of cuisine that I would ever want anywhere, which is awesome. But it’s also hard because it’s, there are so many different cultures that I want to explore and so many different foods that I want to explore. I have to look at, how is this going to impact my blood sugar? How can I still enjoy these meals but also figure out a way to game the system for myself so I can enjoy it, but also make sure that my blood sugar stays where I want them.

Lorena: I work with a lot of Latinos, and many times I hear, “Oh, but Latino culture has so many starchy foods, and it’s going to be so hard for them because they have diabetes.” I always say, “Wait a minute, 45 to about 65% of all the nutrients that we eat come from carbohydrates, it doesn’t matter whether we are Hispanic or not, that’s just what we eat.” It’s always about a shift, about trying to say, “Okay, these are the foods that I eat, these are the foods that are traditional, but then let me just try and play with it to see how much works,” and just trying to shift a little bit instead of just shunning a group of foods because they are or if they’re traditional foods, or you have to stop eating that.

How do you respond to people trying to tell you what you should eat now?

Robert: I try to just say, “Listen, my journey is my journey, and I’m managing things. Let me help you understand why I’m about to eat this and why I can eat this, and how it works in my body.” Some people are receptive to that, some people are not.

Eritrea: I definitely hit them with: “Don’t worry about it, it’s not your business.” I feel 2020 is a little different and the way that society is people aren’t bold to just ask, “What are you eating? What are you doing?” People don’t really do that to me anymore.

Mila: “Don’t worry about it.” I also try to educate people who are willing to listen. There are going to be people who will not care. You’ll try and explain it and tell them and they’ll just say, “Whatever, you have diabetes, you probably shouldn’t do that anyway.” I face a lot of that on Instagram, because I post recipes for things that I cook and things that I enjoy out. If I am invited to a restaurant, I’ll sometimes post a picture of something that I really liked, and someone will be, “Well, that was a croissant, and a croissant has 900 grams of carbs, why would you eat that?” And I have to explain, “Well, I accounted for this in my day.” But also, this is a small snippet of my life that you’re seeing, you’re not seeing every single moment of every single meal that I have. This is one thing and I am allowed to enjoy that one thing, and we’re all allowed to enjoy our food.

Lorena: I seldom say to people that I’m a nutritionist because then people think that I’m the food police. It’s a double-edged sword. One time I posted a meme on social media and I think it was, “Eat whatever you want, and if someone tries to lecture you about your weight, eat them too.”

What are some healthy cooking tips that people can implement today?

Robert: I shop on the outside aisles of the supermarket – the lean meats and proteins, the vegetables, and try to avoid too much of the inside food products. At our house, what we like to do quite often is we pick a day of the week where we have some time and we’ll do some bulk cooking. We’ll grill 10 chicken breasts, slice them up, put them in small freezer bags, and put them in the freezer. If we’re coming home at 5:30 and we’re both racing in the house, we take out the chicken breasts that are already cooked, throw vegetables in the frying pan, sauté a little olive oil, some fresh tomatoes, throw the chicken in, season it up, and you’ve got a quick, healthy meal. Those things help me prepare very quickly.

Mila: Season your food! If you use herbs and spices and different types of healthy fats, you can create really delicious meals really simply without adding a lot of calories or carbohydrates or sugar. You can really vary things just with the different spices that you use. A friend called me the other day and she was laughing and said, “I opened your pantry and the whole wall of your pantry is spices.” I was like, “Yeah, because I cook a lot, why have boring food?” You can change it up just by changing up the herbs and spices that you use in your food.

Eritrea: I’m not a chef but I find that with Mexican food, we use the same ingredients for every meal. We’re just preparing them and spicing them differently. Every meal is tomato, onions, serrano pepper, tortillas… Mila’s right. You can transform dishes with the right spice.

Source: diabetesdaily.com

LADA – Debunking a Common Type 2 Diabetes Misdiagnosis

This content originally appeared on diaTribe. Republished with permission.By Kara Miecznikowski and Divya Gopisetty What is LADA? How is it diagnosed and treated? Read on to learn more and hear from people living with LADA Just like type 1 diabetes, LADA is a form of autoimmune diabetes. This means that the body’s own immune system […]
Source: diabetesdaily.com

Diabetes Cheatsheet for Family and Friends

This content originally appeared on Blood Sugar Trampoline. Republished with permission. Do you struggle to explain your type 1 diabetes to your friends and family? Or maybe you are just tired of explaining it again and again, and again? Here is a quick rundown of some of the basics that you can share with your […]
Source: diabetesdaily.com

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