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Young adulthood comes with plenty of change. Starting college, moving away from home, beginning a first job, traveling, building relationships, and figuring out what comes next can all bring new challenges. For young adults living with type 1 diabetes, those transitions can come with another layer of questions about managing T1D. Finding a diabetes community can help a great deal, and community does not have to mean joining a large support group or making a major commitment.
Valeria “Val” Luong, Manager of Community Engagement at The Diabetes Link, has a lot of experience firsthand. Diagnosed with type 1 diabetes at 23 while serving in the Peace Corps in Costa Rica, Val eventually found the connection she had been missing. Today, she helps create opportunities for other young adults with T1D to find community in ways that fit their lives.
Feeling Isolated After a T1D Diagnosis
Val was living in Costa Rica when she began experiencing symptoms of diabetes. She was constantly thirsty and tired, but she attributed those symptoms to the heat and her active lifestyle. When her family came to visit after she had been away for a year, her mother immediately noticed that something was wrong. Her symptoms eventually became more severe, including blurry vision and numbness in her legs. She went to a doctor and was diagnosed with type 1 diabetes.
As it often is, the diagnosis was overwhelming. Val was not only far from her family, but dealing with medical information in another language. The Peace Corps ultimately decided that she needed to return to the United States.
After spending a year learning about diabetes, Val returned to Costa Rica and later traveled alone for six months. She wanted to figure out how to manage T1D while continuing to do something she loved. But after several years, she realized something was missing; she wanted to know another person her age who understood what it was like to live with diabetes.
Community Can Start With One Connection
About three years after her diagnosis, Val searched Instagram for other people with diabetes. She found someone who appeared to be around her age and decided to send a message. That small step led Val to an online, community-based program where she connected with other people with diabetes. For the first time, she was talking with people her age who understood what she was experiencing.
Seeing other people travel, work, and pursue the things they enjoyed while living with diabetes helped Val realize she was not alone, and that diabetes didn’t need to be something that held her back from doing the things she loved.
The person she originally contacted also became a close friend. They still talk regularly and eventually worked together at The Diabetes Link. For Val, one message became a lasting friendship and helped shape her career in the diabetes community.
What Can T1D Community Look Like?
When people hear “diabetes community,” they may picture a formal support group. But Val says young adults are often looking for something more low key, honest, and relevant to their lives. Sometimes, people want to talk about experiences that are difficult to understand unless you live with T1D. Someone considering an insulin pump, for example, may have questions about what it is like to use one at college, at a party, or while playing sports. Those conversations can create a sense of belonging because they come from shared experience.
Community can also change over time. Someone may want to attend an in-person meetup during one stage of life and prefer an online group later. They may participate regularly, drop in when they have a question, or simply listen. An important belief of Val’s is: there is no single way to be part of a T1D community.
T1D Community During Young Adulthood
Young adulthood can bring many transitions that create new diabetes-related questions. Val shared the example of getting a driver’s license. Someone without diabetes may not think twice about getting in the car and driving somewhere. For someone with T1D, driving can involve additional considerations, such as keeping snacks in the car or thinking about longer trips.
Other transitions can bring similar concerns, including starting a first job, traveling, moving away from home, starting a family, or getting married. Val described talking with a young adult who was anxious about managing her diabetes on her wedding day. She was thinking about how she would manage her blood sugar and what she would have to plan for the day. Having someone who understands those experiences can make it easier to talk through the questions that come with them.
Community Does Not Have to Be a Big Commitment
Val encourages people who feel overwhelmed to ask themselves: What is missing right now?
For her, the answer was simply that she wanted to know one other person with diabetes. Your first step can be just as small. You might send a message to someone you have met, ask someone to grab coffee, go for a walk, or attend an event.
You also do not have to commit to a community permanently. If one group does not feel right, you can try something else. You might connect with one person instead of the larger group, find another community, or create something of your own.
Finding a Community That Feels Right
Val recommends paying attention to how you feel before, during, and after participating in a community.
Ask yourself questions like: Do you feel comfortable and respected? Do you feel like you can be yourself? Are you comfortable with the conversations and the experiences being shared? Afterward, think about how the experience affected you. Did you leave feeling supported and connected, or did you feel drained? These questions can help you decide which communities are a good fit.
Boundaries are especially important online, where personal experiences and medical information can become mixed together. Someone may have valuable experience living with T1D without being a medical professional, but it’s important to not confuse peer support with medical guidance. Remember to always consult with your healthcare team before making a change.
You Do Not Have to Figure It Out Alone
Val’s advice to her younger self after diagnosis is simple: You do not have to figure everything out by yourself. It is okay to ask for support. It is okay not to have all the answers. And it is okay to take things one day at a time.
At Blue Circle Health, we know that living with type 1 diabetes can feel overwhelming, and that having the right support can make a difference. Our free program offers more than clinical care; you can connect one-on-one with a T1D Support Guide, join peer support groups, attend webinars and community events, and access education and resources designed to help you navigate life with T1D. If you’re eligible, you can sign up for free support. You can also share your story to help us better understand what life with T1D looks like for people in our community.
