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Living with type 1 diabetes can feel like a full-time job. You count carbs, monitor your glucose, juggle insulin, all while trying to keep up with the rest of your life. Even with the best and most up-to-date tools and technologies, diabetes can still feel overwhelming. But one thing that can make a meaningful difference is learning how to advocate for yourself.
In the latest episode of Around the Circle, longtime diabetes advocate and entrepreneur Rob Howe joins host Scott Johnson to talk about something every person with T1D needs in their toolbox: self-advocacy. Their conversation is honest, encouraging, and full of practical takeaways that anyone can use, no matter their circumstances.
Why Self-Advocacy Matters More Than Ever
Rob has lived with T1D for 20 years. He was diagnosed at 16 during a pivotal stage of life, yet one thing has carried through every chapter of his story: learning to speak up for what he needs.
Even for someone who is well resourced, highly informed, and surrounded by support, T1D is still hard. There are appointments to manage, insurance hurdles to navigate, devices to maintain, and countless decisions every single day. As Rob shares, even being a former college and professional athlete didn’t make diabetes management any easier. In fact, it added pressure, visibility, and mental strain.
As Rob said in the episode,
“Not one day has passed where I haven’t thought about my diabetes in some capacity.”
That constant decision-making takes energy. And when financial barriers, inaccessible care, or insurance denials enter the picture, diabetes can push people into a constant state of fight-or-flight. In those moments, self-advocacy is often the only thing that keeps you moving forward.
The Four Areas That Shape Life With T1D
Rob shared a helpful way to think about the many factors involved in living well with diabetes. Over time he realized that the work of T1D falls into four areas:
1. Physical
Everything from glucose checks to site changes to how your body responds to activity and food.
2. Mental
Processing fear, stress, information overload, and the emotional weight of a 24/7 condition, including the pressure of trying to “perform” well.
3. Financial
The cost of insulin, supplies, devices, appointments, and the unpredictable changes that come with insurance. Rob emphasizes that these financial pressures can be just as draining as the medical ones.
4. Social
The people who support you, listen to you, and help you feel less alone, a category Rob says is often underemphasized, but completely essential to living well with T1D.
These four areas shape your overall T1D experience. And depending on what is happening in your life, your capacity in each area changes. As Scott points out, resilience isn’t a fixed capacity, it shifts based on everyday life stressors we all face.
Self-Advocacy Is a Skill You Can Build
Self-advocacy can sound intimidating, but Rob explains that it works like any muscle. You build it slowly, one small action at a time.
You do not need a keynote speech or a perfect script. Sometimes it is as simple as saying, “I need orange juice,” when your blood sugar dips in a restaurant; a small act that Rob highlights in the episode.
Those moments matter. They strengthen your confidence and remind you that your needs deserve attention.
Scott shared that his own capacity changes day to day based on work, family, and stress. Most people with T1D can relate to that. When life feels heavy, the diabetes dominoes fall faster. That is why small steps matter. They help you protect your energy while still moving forward.
What Living Well Really Looks Like
During the conversation, both Rob and Scott highlighted an important truth. Effort does not always equal outcomes, and diabetes outcomes are not a report card on your worth as a person. You can work incredibly hard and still struggle depending on the resources, education, and tools you have had access to.
For many people managing T1D in the United States, basic needs like insulin, technology, access to care, and diabetes education for living well with the condition are out of reach. High out-of-pocket costs, lack of insurance, limited access to endocrinologists, and unstable housing or food insecurity all influence daily diabetes care. As Rob put it,
“More people with diabetes are dealing with overwhelming situations than we want to admit.”
This is why meeting yourself where you are is so important. Some days the biggest win might be checking your glucose. Other days it might be making a call about a prescription or setting a boundary with a provider. Each step counts. This episode reinforces that these small acts of self-advocacy are not signs of weakness, but rather signs of strength.
Three Practical Self-Advocacy Actions You Can Start Today
Rob offered three simple, realistic actions that anyone with T1D can build into their routine.
1. Make a friend with diabetes
Connection is powerful. Having even one person who understands your day can change your entire experience. In fact, Rob calls community and peer support his biggest “life hack” for living well with T1D.
2. Start where you are and use what you have
Pick one realistic action today. Check your glucose. Take a walk. Pre-bolus if you can. Focus on what feels doable.
3. Release the judgment
Going high after a meal or struggling through a rough day does not define your worth. You can be accountable without being harsh with yourself, because diabetes is complicated, unpredictable, and influenced by far more factors than effort alone.
