Being diagnosed with Type 1 diabetes (T1D) is a life-altering moment, and an experience that doesn’t come with a manual. We’re suddenly thrust into a world of blood sugar monitoring, carb counting, and insulin dosing—all while trying to navigate the rest of our lives. From our conversations with people living with T1D, here are some of the realities we wish we had known sooner.
1. Diabetes Is NOT Always About the Numbers
Managing T1D is often portrayed as a science of perfect control, but the truth can be far messier. Blood sugar levels can swing for reasons beyond our control—stress, hormones, even the weather. It can feel like a constant guessing game, where even our best efforts sometimes don’t go as planned. The reality is that perfection is unrealistic, and what truly matters is persistence.
There will be good days and bad days, and that’s okay. Every effort we make is a step towards better health, and every challenge is an opportunity to learn more about our body. Our resilience is what truly counts, and it's important to give ourselves credit for showing up every day, despite the ups and downs.
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2. T1D's Must Become Our Own Experts
Doctors and devices provide guidance, but no one knows our bodies better than we do. Many of us develop a sixth sense for our blood sugar levels—intuition built over years of living with the condition. This sense often becomes more reliable than the alarms on a continuous glucose monitor (CGM) or a textbook insulin dosing rule.
For example, when dealing with a pump site failure, we might notice unexplained high readings despite recent insulin doses. We may need to act quickly, switching to manual injections and estimating the insulin required to bring things back in range. Or when a CGM reading seems suspiciously low, we may rely on our own judgment to determine whether it's a false alarm.
Trusting ourselves and learning from our experiences empowers us to make the best decisions for our health. We know our bodies better than anyone else, and that knowledge helps us stay balanced, even when technology isn’t perfect.
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3. The Mental Load of T1D is Real - Be Sure to Celebrate the Small Wins
Diabetes isn’t just a physical condition—it’s a mental marathon. We make an estimated 180 decisions about our health every day, from insulin doses to snack choices. Sometimes, this 24/7 responsibility can lead to burnout, especially when it feels like there’s no room for error. Taking breaks and finding moments of peace is as vital as managing numbers.
It’s important to acknowledge these feelings and remember that burnout doesn’t mean we’re failing—it means we’re human. Whether it’s taking a day off from meticulously counting every carb or allowing ourselves a mental break from the relentless alarms, giving ourselves grace is key to maintaining our well-being.
We need to celebrate the small victories and remember that it’s okay to rest—we’re doing an amazing job. Did you remember to pack your diabetes supplies before heading out? That’s a win. Did you time your dose correctly before eating a particularly carby meal? Another win. Celebrating these moments helps shift our focus from what went wrong to what went right, reinforcing positive habits and building resilience.
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4. Feeling Misunderstood as a T1D is Normal. Remember You’re Not Alone.
Explaining T1D to others can be exhausting. Whether it’s a well-meaning friend comparing our condition to their grandparent’s Type 2 diabetes or a co-worker misunderstanding our sudden need for a juice box, social interactions often come with added layers of complexity. It’s okay to be honest about your T1D and let people know if their comments are inaccurate or if they misunderstand your condition. By educating others, you can help dispel misconceptions and create more understanding.
It’s also important to remember that needing extra support doesn’t make you a burden. If you need help, whether it's asking someone to keep an eye out for signs of a low or simply needing a moment to sit down and rest, it’s okay to speak up. We should never feel ashamed or embarrassed about our condition—living with T1D requires strength, and advocating for yourself is part of that strength.
Finding people who are willing to listen and support you can make a huge difference. Having honest conversations about your needs can be incredibly helpful. Remember, everyone has something they’re dealing with—whether it’s T1D or something else—and supporting each other is just part of building positive relationships and living a fulfilling life.
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5. T1D Deserve More Accessible and Personalized Care
Imagine needing urgent help, only to be told you'll have to wait weeks—maybe even months—to get an appointment. This is the reality many of us face. The care gap in the U.S. is significant, with more than 5,000 diabetics for every endocrinologist. For those of us living with Type 1 diabetes, finding specialized attention can feel like searching for a needle in a haystack — sometimes waiting between 5 and 12 weeks to meet with any provider at all.
In many of our interviews, we’ve found that many people feel let down by the current medical system, which can seem focused on surface-level metrics like A1c rather than the day-to-day challenges of life with diabetes. Appointments often feel rushed, and care can be impersonal. But it doesn’t have to be this way—advocating for ourselves and seeking out providers who truly listen can make a difference.
The good news is that there are dedicated and compassionate healthcare providers out there. By advocating for ourselves and seeking out those who truly listen, we can find the care that meets our needs.
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6. Finding Your T1D Community Can Make All the Difference In the World
Living with Type 1 Diabetes can sometimes feel isolating, but there’s an amazing community out there ready to support us. Whether you're a parent navigating life with a newly diagnosed child, a college student balancing glucose levels with campus life, or an athlete pushing for your next personal best, there’s a space for you.
You can find community through local diabetes support groups, dedicated Facebook groups for parents, or niche online forums for young adults. Diabetes camps provide children and teens the opportunity to meet peers facing similar challenges, while athletes can find like-minded individuals through programs like the Diabetes Sports Project.
Even following influencers on Instagram or YouTube who “get it” can make a huge difference—hearing from those who share your experience can be both empowering and comforting. No matter where you find your tribe, the strength of the T1D community is incredible.
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At GlucoSense, our goal is to make diabetes less about the numbers and more about living our best lives. Stay tuned for more reflections, tips, and real-life experiences from the T1D community. Together, we can make the highs and lows of diabetes just a little bit easier to manage
