Healthy Body

These Type 1 Diabetes Advocates Are Illuminating Black Diabetic Experiences

When I was 13, I was like most kids my age. It was 2008, and my biggest concerns were figuring out how to make a MySpace page and convincing my parents to let me go to the Jonas Brothers concert sans supervision. I was full of energy—I loved playing volleyball and running around with friends. But things shifted halfway through the inaugural year of my teens. In what felt like a flash, my life changed forever.

I started losing weight. A lot of weight. My chubby, big-boned frame disintegrated in months. I was always tired and struggled to keep up with my friends. I was extremely thirsty, and because of my enormous liquid consumption, I had trouble controlling my bladder. After I peed on myself outside of our home, my mom dragged me to a doctor. He took one look at my clammy, exhausted frame and tested my blood sugar. A very-high reading of 395 confirmed it: I had type 1 diabetes (T1D), a condition that occurs when the pancreas makes very little or no insulin, which is the hormone that helps regulate your blood sugar levels.

It's been over a decade since my diagnosis—a decade filled with countless medications, limbo periods, and breakdowns (emotional and physical). Even though I've been T1D for years, there's so much I still don't understand. I feel like a new diabetic in many ways: completely scared and unsure of how to care for myself. My initial diabetes education was rudimentary at best, and years of denial and trauma have made this part of who I am a mystery. I never learned how to grow with my T1D. And I'm just starting to unpack the complicated realities of being Black and diabetic.

Recently, and to my surprise, I've discovered support in navigating Blackness and diabetes on social media. The online diabetes community is rapidly growing. More and more people with all types of diabetes are taking to platforms to share their experiences. There are mighty Black advocates within the community who are committed to sharing their stories on social media, and amplifying the nuanced challenges Black diabetics face.

I first found Tiana Cooks, community manager at Beyond Type 1, on Instagram. Since her T1D diagnosis in 2014, Cooks has made a name for herself in the diabetes community. In her role at Beyond Type 1, she helps make sure panel discussions are impactful and include speakers of different backgrounds and races. But her greatest passion is improving a massive issue in the diabetes community: diversity within diabetes camps.

Diabetes camps are significant for young diabetics, allowing them to learn diabetes management and connect with other diabetics. Unfortunately, these camps aren't accessible to all, and newly diagnosed BIPOC kids are often isolated from them. A 2018 study found that in diabetes camps around the country, 83 percent of campers were white. Because most Black and brown diabetics lack the foundation and stability diabetes camps offer, many of us find ourselves without the knowledge or community support to thrive with diabetes.

"I don't think people realize how crucial it is to be surrounded by people who are like you," Cooks says. "Diabetes camps need to improve their accessibility and inclusivity. I'd love to see more representation and diversity in these spaces." With the help of the American Diabetes Association, Cooks set up a diabetes camp in her native Colorado Springs in 2014. "We started off as a one-day camp with 20 campers," she tells me. "And last year, our now three-day camp had over 100 campers, many of whom were Black and brown."

Cooks' passion for supporting young BIPOC T1Ds has made an enormous impact. The youngins she works with— who she affectionately calls "diabuddies"—look up to Cooks, as do I. I'm surprised to learn of the pressure Cook feels impacts her health. "It's mentally starting to take a toll on me more than it did when I was diagnosed," she shares, adding that stress causes her to get sick.

Cooks' latter statement is relatable. I have long struggled with stress management as a means of controlling my diabetes, and studies have shown that cortisol (aka the stress hormone) can make blood sugar levels skyrocket. This means stress management is especially important for people with diabetes. Between the nuanced stressors that come with my condition and being a Black woman in America, managing stress is a complicated effort.

Cooks isn't the only content creator who feels the weight of their platform. Eritrea Mussa Khan, content creator at Diabetics Doing Things, knows firsthand how stress, Blackness, and trauma can trigger diabetes. "My experience is kind of weird because I relate my type one diabetes diagnosis to September 11," she says. Khan went to an Islamic school that was also a masjid (Islamic place of worship), and there was a shooting just after the attacks. The Mussa family then decided to leave the country for their safety. "My dad took me and my brother overseas to stay with family in Germany for a while. And we didn't come back until January [2002]. I was diagnosed a week after I came home."

Like Cooks, Khan started working within the diabetic community soon after her diagnosis. She and her brothers attended Camp New Horizons—a diabetic day camp in Dallas for Black T1Ds and their families. At 13, Khan became a counselor in training. "I just never realized so many people just need to help.  So early in my journey with diabetes, I had the seed of advocacy."

Fast forward to 2020, and Khan decided to share her experiences on social media. "I started off with a random post about what I carry in my backpack. It didn't get a whole bunch of likes or comments, but I got a ton of messages from people who knew me saying they had no idea that I have to prepare this much on a daily basis just to be alive." After a seizure at work, Khan realized she needed to be even more open on social media platforms. "If my coworkers didn't know I'm type one diabetic, I would have died. That pushed me to do more on social media and beyond and snowballed into an avalanche of what my work is now."

At Diabetics Doing Things, Khan makes sure the platform discusses issues that affect Black and brown diabetics. Khan says her podcast series, More Than A Diabetic, is her proudest accomplishment to date. The four-part series featured 15 BIPOC members of the diabetic community, talking about their experiences, struggles, and thoughts on Blackness and diabetes. "It's essentially a series about Blackness and otherness and what we can do as a community to be better," Khan explains.

Khan's right. The diabetes community needs to do more in the realm of inclusivity and highlighting Black diabetic experiences, which became abundantly clear last year. "On Juneteenth [2020], seven Black diabetic women were severely harassed by diabetic online community," Khan says. "No one stood up for them, and there was a lack of representation in content pushed out by diabetic nonprofits in response to the BLM movement."

Khan observed online diabetic spaces failed to make room for Black voices, which inspired her to create More Than A Diabetic. "I wanted to talk about Atatiana Jefferson, a type one diabetic who was murdered here in Fort Worth by the police department," she explains. "I want to talk about how police brutality can impact us. We carry things on our bodies that look like tactical weapons. If you look at a pump the wrong way, it looks like a gun." We rarely hear conversations about these stressors that Black diabetics experience daily. The reality of it is overwhelming, and I'm just scratching the surface of how the stress affects my life and wellness.

"It's difficult for sure," T1D advocate Dan Newman shares. "I'm starting to think about how all these identities interact with each other." Like Cooks and Khan, Newman is incredibly candid about his experiences with diabetes on social media. He started a blog, t1d_dan, in 2018 and an award-winning podcast, Talking Type One, in 2020. Both projects were inspired by the isolation he's felt with his diabetes. "I just thought of helping others because there've been times when I felt so alone, particularly when you get diagnosed with complications and feel like you failed," Newman says.

Finding a community of diabetics, especially Black men, has played a crucial role in Newman finding solace. "On the one hand, I'm a Black man, and I have to be 'strong,' and on the other hand, I have this illness that sometimes leaves me defeated," he explains. "Being able to connect with other Black men with type one has really helped me. We need to start seeing more Black men at the forefront of the diabetes online community, and I just hope I can help elevate our voices."

Phylissa Deroze has similar motivations. When she was diagnosed in 2011, Deroze looked for "a space where you saw a Black person smiling with diabetes, and I couldn't find it. I looked for about a year." Deroze created her blog Diagnosed Not Defeated from her hospital bed to share her journey with loved ones.

"I was just overwhelmed and overcome by so many questions, and I didn't have any friends who had diabetes," she shares. "I wrote my first blog post because I didn't have the emotional bandwidth to tell the story over and over again to family and friends." It grew into something much bigger, and now Derzoe is a titan in the T1D  community. Her popular Instagram account, Black Diabetic Info, is filled with something unique in our community: content tailored to Black diabetics.

"It's so much bigger than me," Derzoe says of her account. "People can come to my page and find Black people living with diabetes who are smiling and thriving. They can find Black doctors, diabetic-friendly southern recipes, Black prayers—whatever they need."

Having diabetes is tiring, scary, and, most of the time, overwhelming. Being Black can feel similar at times. But the most challenging thing about having both identities is the strandedness. I've always felt secluded in my pain, physical and emotional. But finding Tiana, Phylissa, Eritrea, and Dan has shown me I have a community to turn to and to learn from. And just knowing that I belong to something, with people who go through what I go through, has helped me turn the corner towards healing.

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