My name is Steven, and on March 16, 2021, I will be celebrating my 10th year of living with Type-1 Diabetes (T1D). Over the last decade, I’ve become the first for many things in my family. From living with T1D, to graduating from The University of Texas at Austin, or from living in Washington D.C. to teaching middle schoolers amid a global pandemic, my diagnosis with T1D has helped me handle the highs and lows of being “the first” of many things. As I reflect on the 13-year-old I was when I first heard the news, I remember thinking to myself, “why me?” As the years went on, and I eventually “found my tribe,” discovered the continuous glucose monitor, the T:Slim x2 insulin pump, and cultivated a social media platform to help others feel more comfortable in their own skin, I began to put all of the seemingly unsolvable problems into greater perspective. 10 years later and I have seen that initial question of, “why me?” blossom into, “why not me?”
I want to thank my fellow friends with T1D, Rob Howe and Eritrea Mussa Khan, for allowing me the opportunity to share my story with an even larger T1D community than I am used to operating within. They believe, just like I do, that we are all stronger together. 10 years of living with T1D is a very long time in retrospect. I hope you enjoy these 10 tips for surviving and thriving with T1D that I have learned over the years. Take from them what you will. What’s said here will stay here, but I hope what is learned here will leave here.
#1 You know you best.
Operate your world accepting that there is no one who really understands your body, your emotions, your history with T1D, or your hopes and fears surrounding it, quite like you do. The caregivers around you will try to take on your pain and worry as their own, your endocrinologist will hopefully try to empathize, and your friends who don’t live with T1D will offer sympathy – but don’t forget you are your own expert. Sit in the driver’s seat with pride.
#2 Be your own advocate, first and foremost.
I am a schoolteacher and if my school district had it their way, I would have taught in person in the middle of a pandemic. I had to figure out on my own how to navigate the nuts and bolts of my district’s human resources department to determine in which way I could apply for our legally protected ADA accommodations in an effort to work from home during an inflection point of COVID-19. I got a letter drafted and signed by my endocrinologist simply stating that I was her patient living with T1D and also lived with another auto-immune condition (ITP). If I wasn’t my own advocate stepping up for myself, I might’ve battled COVID-19 or worse.
#3 Don’t lie to yourself about the numbers.
I was 13 when I first diagnosed, and there were no digital apps at the time to track blood sugar numbers. I was tasked with writing down breakfast, lunch, dinner, and nighttime blood sugar numbers onto a sheet of paper for my endo. If you know anything about teenagers, you know how much that is to ask them (on top of their other schoolwork, video games, sports, or whatever else piques their interest more). I remember being a kid and fudging the numbers because I believed it would make my doctors and parents most proud to see stable readings. I wanted to operate on a “nothing to see here” kind of mindset. My A1C was off the charts those years, however. It messed with my mind and really did nothing good for me. I wish I knew earlier there was nothing shameful in reporting “bad” blood sugars. That’s life. Honesty is always the best policy, so kids out there if you’re reading, don’t be ashamed of the highs and lows of your life – they’re a part of the process. Don’t try and run away from them – please look at them head on.
#4 Cry when it’s time to cry – but don’t forget to move forward.
It was the December of my first year of teaching and I remember calling my sister in an angry fit of rage. “I hate having diabetes,” I exclaimed fighting back tears. “I would be so much better at everything in life if I didn’t have diabetes. I would teach better, I would run faster, and I would have more sleep at night.” I’m thankful for my sister for listening as someone with experience teaching but without experience as a person with T1D. I cried out of frustration. I cried at realizing all of us with T1D have to make more decisions every day to simply stay alive than those around us. That, on top of teaching middle school students was beginning to catch up to me all at once. I cried a good cry. But luckily my sister did what all the best big sisters do over the phone – she picked up me off the ground, dusted me off, and helped me make a plan to move forward, worrying first only about what I could control in that exact moment. Thank goodness for her and thank goodness for the catharsis of crying.
#5 Find your tribe.
Who are your people outside of your care team? If you want to live a happier life with T1D, consider finding an adult group, a chapter at your college within the College Diabetes Network, or follow interesting T1D accounts on Instagram or Facebook. Your family members and healthcare team are important to have, but no one gets it like a fellow person with T1D gets it. You’ll realize that bonding with new people over the stresses of carb counting, working out, navigating supply ordering, and all the other sides of this multi-faceted life can really improve your outlook on your own condition.
#6 When you feel yourself burning out, choose to burn in.
I will be graduating in May with a Master of Education. In a class I am enrolled in called, “Positive Psychology” we focus on the ways in which our minds trick us into believing we are worse off than we actually are. In some of the studies I’ve read, researchers claim that some of us navigate the world in a fixed mindset, where we are overly critical, extremely anxious, and see most of our shortcomings as tremendous failures. Changing your mindset is a choice, and I’m learning in class to live with a “growth mindset” where I invite challenge into myself, seek feedback, and choose to reframe common statements to more positive ones. The idea of “burning in” instead of “burning out” revolves around finding what within you is really awesome when it comes to T1D. There is something we do well at. Putting in your CGM? Treating a low? Checking your blood sugar? Predicting a high? Find whatever it is, and don’t forget it when the world around seems to be burning out hotter than ever before.
#7 Don’t forget your “why.”
It’s easy to get caught up in all the highs and lows of life with T1D but remember to enjoy the moment and remember why you keep trying your best to stay alive. For me, my “why” are my two friends I have lost to T1D. Nothing is more saddening to continue living a life without two members of your tribe. But when we forget them for all they were – their beauty, their laugh, their smiles -- we’re forgetting why we are advocates, leaders, and fighters. I think about them every day, and for the rest of my life, I am committed to helping improve the lives of others with T1D. At least that’s what I know my two pals who passed from T1D would want me to do.
#8 Remember that the human body WANTS to stay alive.
I’ve sat in on special sessions about diabetes in the halls of the United States Congress, I’ve listened into experts speak on panels at a plethora of JDRF events, and I’ve had three phenomenal endocrinologists in my last decade of diabetes. All of those voices have in one way or another told me about the resilience of the human body. Our biggest fear is death, right? Not being able to catch a low. Not having enough insulin to combat a high. Who will help us if we live alone? The human body, however, fights for us. It’s what alerts us sometimes before our CGM does. It’s the sweat running down our forehead when our blood sugar drops while driving. It’s the accelerated heart rate every time we enter a fight or flight bodily response. To any parent or caregiver reading this, please know that your child or family member with T1D will always have some degree of bodily awareness – stronger and more accurate than a piece of technology can predict. Our body, after all, wants to stay alive – just like everyone around us does.
#9 If you are doing your best, you are doing a great job.
T1Ds judge themselves too much. That’s what I’ve gathered from meeting hundreds of them in the past decade. We are all the same, but we all have our unique insecurities. Most of the people with T1D do something really great for their communities. I’ve met doctors, nurses, firefighters, marathon runners, spin cyclers, politicians, teachers, judges, moms, dads, college kids, and young adults all with T1D. They each want to help others before themselves sometimes. I’m guilty too. But what we must remember is that we’re doing our best. And if we’re not, the resources exist out there for us to do better. But that’s a choice we have to commit to advocating for. Sometimes, in this pandemic, people point the finger unfairly at others, causing us to be more self-critical of ourselves. If no one has told you yet that you’re doing great, let me be the first! You’re doing your best, and that’s a really great job.
#10 Thank your T1D team – no one on this Earth loves you more than them.
I lost track of how many arguments I have gotten into with my parents and sister about T1D in the last 10 years. They all stem from what I believe was an encroachment on my expertise. “I know what I’m doing!” “Trust me!” “I want to stay alive too!” Despite all of those heated arguments about CGMs, diabetes management, and where my family fits into all of it in between, I have learned over time to see the forest from the trees. Arguments come from a place of care and love, believe it or not. My parents express stress and worry differently than I do. But the day I realized I don’t understand what it’s like to have a son with T1D, I only understand what it’s like to be the son with T1D, I finally got why they are the way they are. No one was there for me at my diagnosis like they were, and I’m blessed to have them still to love and care for me just as much as they did the day after I left the hospital 10 years ago. Don’t forget to give thanks, kids. In this time we are living, there is surely more than enough of it to go around.
