What do you think about when you hear “type 1 diabetes?”

Type 1 diabetes (T1D) is a devious disease in that you may not notice symptoms until the autoimmune attack on your pancreas’ insulin-producing cells is already in full-fledged mode. And from that point on, you must take on the onerous task of mimicking the natural function of one of the body’s vital organs. Managing type 1 diabetes is both a 24/7 job and an inexact science. Many type 1 diabetics suffer in silence, constantly struggling to maintain a balance of blood sugar and insulin while dealing with the disruptive and draining symptoms of highs and lows.

My exposure to T1D began in 2015 when my mom was diagnosed with this once “juvenile” disease at age 61. But it really didn’t hit home until my then 13-month-old daughter was fighting for her life with diabetic ketoacidosis, a serious condition in which the body breaks down fat for energy, producing ketones and poisoning the body. My own diagnosis followed 8 months later in 2018. Needless to say, I have experienced T1D through the lens of both a patient and a caregiver. Perspectives can vary greatly depending on experience, age, education, peer influence, social media, etc. It’s interesting to see how even my own perspective of T1D has changed once I became an “insider.” Throughout the last 5 years, I’ve become more aware of myths and misinformation in the public space and on how others may view what you think is obvious.

What type 1 diabetes means to…

 
The misinformed A type 1 diabetic A caregiver of a type 1 diabetic
You just need to avoid sweets. I have to consider everything I eat. There are even carbs in asparagus! How do I calculate his insulin dose for that birthday cake?!
It’s ok to “cheat” every now and then. If I “cheat” I can end up in the ER. If I don’t dose her insulin correctly, she could end up in the ER. Her life depends on me.
You just need to take a shot or press a button before you eat. Eating is a mathematical process—it involves counting carbs and figuring out how much insulin I need based on the meal and my current blood sugar.   Every meal involves math—weighing, calculating, and dosing. And if he doesn’t finish his food, then I’m scrambling to make up the carbs I already dosed for.
You’ll grow out of it. It can be reversed. I’ll have type 1 diabetes the rest of my life. My pancreas can no longer work the way it should.  I am her pancreas. She depends on me to replicate the functions of an organ!
Just watch what you eat and exercise. Everything affects my blood sugar: food, stress, hormones, sickness, waking up in the morning, the phases of the moon. Blood sugars can be so unpredictable. I can do everything right, and still get it wrong.

At Jumo health, we aim to educate in easy-to-understand ways to reverse misconceptions and support people living with a medical condition or caring for someone with a medical condition by empowering them with knowledge.

What type 1 diabetes means to…

 
A first-grade classmate A first-grader with T1D
No fair, you get to eat candy and snacks during class. I can’t always eat when I’m hungry, especially if my blood sugar is too high.
Cool, you have an iPhone! It is pretty cool that I have snapchat. But I have to carry my phone around wherever I go.
You wear a funny thing on your arm. None of my friends have to wear this on their arm. It reminds me that I’m different.
You sure do beep a lot. I get embarrassed when my continuous glucose monitor won’t stop beeping.
You don’t have to take part in gym class if you don’t want to. I want to play with my friends, but I have to sit out gym class and recess when my blood sugar is low.
Why do you visit the nurse at lunch time? How come none of my friends have to do these things?

We use simple explanations and relatable stories so that children living with a chronic condition don’t feel alone, and we provide them with the tools and confidence to help them explain their condition to their peers.

Conclusion

Not all perspectives are one size fits all and neither are all educational needs. At Jumo Health we customize materials based on your needs, depending on your audience, age group, and culture.

As a type 1 mom of a type 1 child and senior medical writer at Jumo Health, what we do every day is personal, and I am grateful to be part of such an important mission.

So what does “type 1 diabetes” mean to me? In our household, it means sleepless nights, constant decision-making, endless worry, and no breaks from this relentless disease. But type 1 diabetes also means strength, courage, patience, resilience, compassion, and finding joy in life’s small moments.