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Living with type 1 diabetes means spending a lot of time navigating healthcare. You likely see doctors, work with a diabetes educator or dietitian, deal with insurance, and rely on pharmacies and other parts of the healthcare system just to get the care and supplies you need.
For providers, there’s a big difference between understanding diabetes and understanding what it looks like in someone’s actual life. Does your healthcare team understand your culture, the foods that are important to you, your family, and your daily routine? These are the questions at the heart of much of Kacey Sochacki’s work.
Kacey was diagnosed with type 1 diabetes when she was seven. Early in her diagnosis, she connected with the diabetes community through summer camp. That experience stayed with her and eventually helped shape her career as a dietitian and co-founder of Diversity in Diabetes.We recently talked with Kacey on Around the Circle: Living Well with T1D about cultural humility, finding healthcare that feels like a good fit, and why representation matters in diabetes.
Why Diversity in Diabetes started
Diversity in Diabetes began with a conversation at a diabetes conference, where Kacey and Quisha Umemba were tabling for The Diabetes Link, an organization that supports young adults living with diabetes. As they looked around the conference, Quisha noticed how there were so few people who looked like her.
Quisha’s observation started an important conversation. Kacey had been part of the diabetes community since childhood, and knew how meaningful it could be to connect with people who understood what life with diabetes was like. Quisha and Kacey then began thinking about how everyone living with this disease deserved that same experience.
Their first major project was the People of Color Living With Diabetes Summit. Originally planned as an in-person event, the summit moved online during the COVID pandemic. The response showed them just how much people wanted a space to connect and talk about experiences that don’t always come up in a traditional doctor’s appointment.
One of those conversations was about cultural food. People wanted to know how they could continue enjoying foods that were important to their families and cultures, while managing diabetes. For Kacey, that was an important example of what inclusive diabetes care can and should look like.
Cultural humility starts with listening
Kacey describes cultural humility as recognizing that, as a healthcare provider, it is so important to learn from the lived experiences of each individual patient. In other words, understanding the cultural practices, foods, routines, and family dynamics that shape someone’s life is critical.
Kacey gave an example from her current work where she sees many people from Hispanic communities. Some patients may eat dinner around 8 p.m. If a provider assumes everyone eats at 6 p.m., their advice may not fit this particular person’s actual life.
Food can create similar challenges, particularly when a patient mentions a dish that a provider has never heard of. In this situation, the provider may not know what’s in it, how it’s typically prepared, and consequently, how to take insulin for it. Kacey explains that the answer isn’t for providers to know every cultural food, but rather to ask questions and be willing to learn.
The challenge in our traditional healthcare system today, is that there isn’t always enough time for those important conversations.
Fifteen minutes isn’t enough time
Kacey described having around 18 appointments scheduled in a day in her job at WIC, with some appointments lasting only 15 minutes. For someone managing type 1 diabetes, that’s not much time for a disease of this nature.
A person may have questions about food, insulin, technology, insurance, or something that happened months ago. They may also need to revisit information from a previous appointment. When appointments are short and spaced months apart, to no fault of their own, it can be difficult for a provider to understand what someone’s everyday life with T1D actually looks like.
Kacey also talked about the importance of connection. People can learn a lot from their healthcare teams, but there is something different about talking to someone who lives with diabetes, too. Sometimes you need information from a healthcare professional. Sometimes you need someone who simply gets it.
Finding a provider who is willing to learn
Finding the right healthcare provider can take work, especially when insurance, location, and availability limit your choices.
Kacey encourages people to think of the first appointment as a chance to interview the provider, too. Ask about their experience working with your culture or community. Talk about the parts of your life that affect your diabetes management and see how they respond. Kacey also stresses the importance of paying attention to what happens when they don’t know something.
A provider doesn’t have to know everything about your culture. What matters is whether they’re willing to listen and learn. If the relationship isn’t a good fit, Kacey also wants people to know that it’s okay to look for another option when that’s possible.
The Diversity in Diabetes Care Directory
For people looking for culturally responsive care, Diversity in Diabetes has created a Care Directory.
The directory includes healthcare professionals such as dietitians, nurse practitioners, physical therapists, and even dentists. Providers are reviewed and vetted thoroughly before being added, and people can filter the directory based on things like:
- Remote or in-person care
- State or location
- Languages spoken
- Practice and specialty
Once you find a potential provider, you can visit their website or contact them directly. The directory has more than 100 providers, and is continuing to grow.
Representation matters in research, too
The conversation about representation doesn’t stop at the doctor’s office. Kacey also talked about the importance of having diverse communities represented in diabetes research so researchers can better understand whether medications and treatments work for everyone.
With that being said, representation requires trust. Past experiences with medical research have affected trust in some communities, and there are practical barriers that can make participating in research difficult as well.
Kacey believes diverse communities need to be involved from the beginning. As she put it, some people “are not waiting to be invited to these tables. They’re bringing their chair, and they’re sitting down.” Voices like these need to be part of the conversation from the start.
What can the diabetes community do?
If you have a healthcare team you trust, Kacey encourages you to use your voice to help other people find good care, too. Recommend a provider, share a resource, encourage a healthcare professional to join the Diversity in Diabetes Care Directory, or simply listen when someone tells you their experience with diabetes is different from yours. Kacey explains that you don’t have to be struggling personally to care about whether other people are getting the support they need.
You don’t have to navigate T1D alone
Finding care that works for you can take time and energy, especially when managing type 1 diabetes already takes so much of both; that’s a key part of why Blue Circle Health exists.
Blue Circle Health provides free clinical care, education, and support for adults living with type 1 diabetes. The program works alongside a person’s existing care team, and creates an individualized plan based on the support they need. If you’re eligible, you can sign up for free care. You can also share your story to help us better understand what life with T1D looks like for people in our community.
