Emily

 
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Age: 27 Year Diagnosed: 2017 Location: Philadelphia, PA

“I have 2 close family members who have Type 1 Diabetes. After I was diagnosed I was in complete shock about how much I didn’t know about Type 1. They both choose to keep their diabetes private. They find bathrooms to do injections and finger pokes, so naturally I thought that was “normal”. I remember my first public diabetes encounter was on an airplane two days after I was diagnosed. I was sitting in the middle seat with one of my nanny kids sleeping to the right of me and a lady sitting to the left of me. I was hungry and had to make a decision between waking a sleeping toddler to go to the bathroom to check my blood sugar and give an insulin injection or suck it up and do everything in front of a complete stranger. I chose to wake the sleeping toddler and go into the bathroom. However, I quickly realized that method was not going to work for me and slowly became more and more comfortable with doing all things diabetes in public. I now love having natural opportunities to educate people. It usually only takes one injection, finger prick, or wearing my medical device in plane site to get a conversation started.”


Charlotte

 
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Age: 3 Year Diagnosed: 2017 Location: Austin, TX

“Having a toddler diagnosed with Type 1 Diabetes is HARD, and then adding in special needs makes it even harder. My parents tell me all the time how much credit they give to parents of Type 1 Diabetics before CGMs were around. Take it day-by-day and night-by-night, as no two will ever be alike. There will be a lot of sleepless nights dealing with highs and lows. Just when you think you’ve got the dosing figured out, it will all change. Don’t hesitate to try new things or listen to advice from other parents; we are all in this together. The majority of what my parents have learned about Type 1 Diabetes wasn’t from a doctor, rather trial and error and other parents who have been in a similar situation. Do what works for you and your child and at the end of the day, as my Daddy says, ‘If you have a tough day, Diabetes may have won the battle but it will never win the war’.”


Wendy

 
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Age: 27 Year Diagnosed: 1994 Location: Los Angeles, Ca

“From cooking and carb-counting to bolusing and balancing, my mom had always done everything for me. On my first day of middle school, she even took the day off work to drive me to school so that she could give me my lunchtime injection. The school nurse was livid. She insisted that I must do this on my own, and asked my mom if she planned to take every day off work to do this for me. Embarrassed, we both stared at her, knowing that she was right, but neither of us was ready to take the next step. Nonetheless, Nurse Sue grabbed the syringe from my mom's hand and forced it into mine. My heart raced, and I started to sweat--I had never felt so anxious, helpless, and nervous altogether. But I also knew that Nurse Sue would not relent, and I was getting hungry. So I took a deep breath--or five--and gave myself my first injection ever. As I withdrew the syringe from my arm, I heard my mom's deep sigh of relief and Nurse Sue exclaim, "See?! That was easy." Even though I was so intimidated by--and mad at--Nurse Sue in that moment, I came to realize that that was a major turning point in my life. It was the start of me managing my health on my own. More importantly, it was my first taste of empowerment when it came to diabetes.

There is so much I want to share for advice, but I'll narrow it down to a couple of things: 1. When I was much younger, I used to think that nobody would want to date me because they wouldn't want to deal with the blood, the insulin, the needles... But the fact that I have T1D has not scared anybody away! People will care and help more than you think, and if they don't, then they probably aren't worth dating anyway. 2. Community is crucial. It can be easy to feel alone in our T1D management because we aren't necessarily surrounded by other diabetics daily. But there is such a large community out there (especially here on Instagram), and it's so wonderful to reach out to and meet others who not only support you through your struggle, but also really understand it.”

Keegan

 
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Age: 20 Year Diagnosed: 2004 Location: Huntington Beach, Ca

“This isn't necessarily funny but it is a pretty wild story. My senior year of high school I was sitting in the cafeteria about to give myself an insulin shot for lunch when one of my deans approached me and informed me that I wasn't actually allowed to do that inside the cafeteria because someone might see a needle and it might make them uncomfortable. I responded that I'd been doing this for three and a half years and no one seems to have a problem with it, nor do I really care if it makes them uncomfortable, as I literally had to do it to survive. He told me I needed to go to a restroom or the nurse's office, which I told him was a ridiculous thing to ask of me, not to mention I had doctors' notes and paperwork that legally allowed me to give myself insulin on campus. He then got mad and told me to immediately follow him to the deans office which I agreed to, only after I gave myself a shot, which I did as I kept talking to him. He didn't like that, and angrily escorted me out of the cafeteria with all my friends yelling at him for discriminating against me for having a disease. I ended up calmly explaining my disease to my deans who were extremely ignorant of the treatment that is required for Type 1 Diabetes and ended up not being disciplined at all, though the one dean never apologized. Not the funniest story but pretty interesting nonetheless, it was really eye-opening to see how ignorant people really are of our disease.

Just in case any kids or parents of newly diagnosed Type 1's are reading this, having Type 1 Diabetes shouldn't stop you from doing anything. If anything, it should make it easier to do everything. Knowing that you have an invisible, chronic illness and are beating it everyday you wake up gives me motivation to do virtually anything I set my mind to. If you have Type 1, you can do anything a "normal" person can do, and probably even better, because you already have the experience of dealing with adversity on such a constant basis. Keep a positive outlook, embrace the fact that having Type 1 has made you who you are, and don't ever try to hide having Type 1.

Don't try to be perfect. Everybody has their good days and bad days, all you can do is try to stay positive and be glad you wake up every morning having survived another day with Type 1. People will always have better A1C's with you, but as long as you're trying to manage your numbers the best you can and keeping your head up, don't stress it too much and try to enjoy life. As long as you're not doing it everyday, don't be afraid to have that donut or eat a whole pizza if you're really feeling it, just make sure you correct for it and watch your numbers carefully. Also, be active and work out. Staying active everyday makes insulin way more effective on my blood sugar levels and makes managing Type 1 so much easier.”

Kylie

 
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Age: 25 Year Diagnosed: 2005 Location: Torrance, Ca

“I was out with my friends one night, and this guy came up to me and touched my Dexcom. I told him not to touch me, but he kept poking it and asking what it was. Luckily, my friends were there and told him to back off. Some people are curious about my devices and others are just rude. Another guy came up to me at the gym, pointed to my Dex and asked, ‘Is that where the aliens plug you in at night?’ I didn’t even know him!

Aside from the physical and emotional stress diabetes brings, I’ve struggled a lot with health insurance and getting the right supplies. Find an endo that you trust and that will push to get the things you need!”


Camelia

 
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Age: 26 Year Diagnosed: 2018 Location: San Diego, CA

“I wanted to write something great, amazing, incredible. I thought about what to write and what exactly I wanted to say. Sure, I thought about telling my story. Long story short I was in DKA, 85lbs. and grateful I was alive. I had all the common symptoms like that unquenchable thirst (which is real AF), frequent urination, weight loss, constant hunger. It hasn't even been a year since diagnosis and it already has been quite the journey. It's been a fast learning experience and a huge adjustment to my life. To be honest, I just want to share some of my feelings and thoughts I went through. I thought of diabetes as most people thought, which was caused by unhealthy lifestyle. I was embarrassed to tell my friends I have type 1 diabetes for that exact reason. It's not caused by that (google it). I was depressed about diagnosis for a months. It was very hard to accept that my body didn't work like "normal". I was different. Along with being different, I've struggled with self confidence. I'm thankfully at a healthy weight now, but I think of my weight before all this. I've never been at this weight. Also having a CGM on me is different, but it literally saves my life. So why should I be self conscious about that? I was so concerned about what other people thought that I lost sight of what I thought of myself. My body is my home, and I'm healthy now. Although this illness has put me through tons of emotions, it doesn't control me. Sure, it might have me pause when my blood sugar is low, but I will drink some juice or something and continue on. From the finger pokes, to counting carbs, shots, site changes, literal highs and lows. It's constantly on my mind. But it doesn't define me. It has truly made me a stronger person. It's a part of me. And it's a part of me that I could hate or that I could love. I choose to love it.”

Yaniv

 
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Age: 26 Year Diagnosed: 2002 Location: Los Angeles, Ca

“I remember when diabetes used to severely impact my dating life. I was embarrassed by the tubes, patches and needles that seemed to be everywhere all the time. The tube would get tangled up on things, or even caught on door handles going into classrooms in high school. I would have to stop and explain, saying "this isn't a pager" or cut it off even more briefly with "it's nothing". Things have changed drastically now as I know this is something I couldn't control getting diagnosed with or anything and I own it. I make jokes about my Omnipod being an old school Palm Pilot because to me, humor allows us to deal with anything and shows strength in handling any situation.”


Rachel

 
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Age: 34 Year Diagnosed: 1988 Location: Los Angeles, Ca

‘Having had T1D for so long, it’s easy to think I know everything. NOT SO! Making the effort (for the first time in 30+ years) to learn from other diabetics in this network has been super useful.”


Courtney

 
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Age: 28 Year Diagnosed: 2004 Location: Chicago, IL

“The amount of times I get asked if my pump is a pager still astounds me--what year is this? Too much. At least sometimes I get mistaken for a doctor on call when my pump is yelling at me in a class at the gym. Alas, I am a middle school reading teacher. ;) I used to be pretty uncomfortable with questions about my devices or telling people about my diabetes in general, but now I really see it as an important opportunity to educate people and clear up misconceptions about Type 1. I mean, I didn’t know much about diabetes either until I had to! While you still get some rude people that feel like they can ask you anything or assume things about you (like my high school security guard that tried to rip my pump off my body thinking it was a cell phone), in general people have good intentions. It’s cool to see all the compassionate questions my students, friends, and coworkers will have and how much they are genuinely interested in learning about diabetes. Now, I wearing my dex and pump with pride, y’all!

Something I’ve struggled with that I’m sure pretty much everyone with Type 1 has, is accepting this hand we’ve been dealt. I was diagnosed right before going to high school, and diabetes definitely had an effect on how I navigated the world as a young adult. Just as everyone was looking for independence from their parents, I was suddenly completely reliant on them again and apprehensive about going out into the world and trying new things. I had to re-learn how to do basically everything someone does in their daily life through the lens of diabetes. It was a great source of anxiety and self-consciousness for me for many years. Fifteen years later, I still get frustrated about the mental and physical toll that diabetes demands of us every day, and how different my life might be without this challenge. While it is easy to feel resentment about the extra (several) balls we are constantly juggling, I am recognizing with time that in many ways, having diabetes has shaped me irrevocably as a person in ultimately positive ways. I am more in tune with my own body and feel so much gratitude for the functions it does perform on its own. I am tougher and more resilient than I would have been. I have valuable perspective when smaller problems in life arise. I have greater empathy for those also struggling with illness. One of my goals for this year is to not let diabetes frustrate me as much as it has in the past or hold me back from anything I want to do.

If I have any advice for new diabetics, it is to get and stay connected with other Type 1’s! Personally, I am still working on this--I tend to internalize all my frustrations, fears, questions. This is probably because I knew very few other Type 1’s growing up and felt that this was just something it was my responsibility to deal with. Just recently, I’ve found this community on Instagram and made efforts to reach out to other diabetics, like volunteering at a diabetes camp last summer. Let me tell you, these have been the coolest experiences! Why haven’t I done this before?! I’ve had diabetes for 15 years, and it’s still amazing to me to get to have a conversation with someone that just totally gets it. The instant connection that comes from conversations that use all the terms that it feels like nobody else has to know and express all the feelings you normally only have in your own head. Type 1 touches almost every part of our lives, so I really regret keeping it to myself for so long! Vulnerability is truly a strength when it comes to diabetes. We’re all here for each other in this thing, unlike anything else I’ve experienced, and that’s pretty awesome.”


Tanner

 
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Age: 28 Year Diagnosed: 2008 Location: Dallas, TX

“Keep low fixes nearby at all times. Keep them on the nightstand, in the car, in your gym or work bags; preparation goes a long way! Even when you don’t feel like it, be prepared and take care of yourself. Be good to your body and it will thank you!”


Rachel

 
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Age: 25 Year Diagnosed: 2004 Location: Chicago, IL

“When I was doing my undergraduate degree, I had a low I didn't feel during my Physics lab class. I had my Dexcom receiver (the ugly chunky oval for the SevenPlus) in my backpack and on vibrate and did not know it was alerting. Because I had missed the alerts, a loud siren noise started from the receiver. Another girl in the class stood up and started to walk out of the room. As she stood up she says, "Why aren't y'all leaving? Isn't the fire alarm going off?!"

ALWAYS carry extra insulin and pump supplies with you! It took me years to get into the habit. It’s an inconvenience, but it is so much better than missing out because of a pump failure.”


Alex

 
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Age: 36 Year Diagnosed: 2008 Location: Chicago, IL

“Dating in your mid 30s is rough, but having to explain that you aren't taking drugs at the table to someone you just met is even rougher!

A misconception I wish I could change is that we are only diagnosed when we are really young. I was 26 so I knew what it was like to live without diabetes for a good portion of my life. While I am thankful that I didn't have it when I was in college, it's tough being diagnosed later as you don't have as much support like diabetes camps or family living with you to help you navigate the first few years.

I was diagnosed because of a random blood test, before I even had symptoms. I still had a very small amount of insulin production and because of that, my doctor encouraged me to participate in a research trial for people in my specific situation. While I ended up getting a placebo and the test therapy did me no good, I loved working with the research team and appreciated the process of participating so much. It's something that I feel like every diabetic should do at some point because of the amount of time they spend with you talking about your diabetes. I had a nutritionist at my disposal that I could meet with for free at any time and I got to meet a lot of other diabetics in my specific situation. I got to know the doctors and researchers very well throughout the 2 years I was part of the trial and it made me feel like I was part of a larger effort to find a cure.”



Jenny

 
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Age: 27 Year Diagnosed: 2015 Location: Chicago, IL

“I once got my insulin pump tubing stuck in a necklace it was a whole ordeal to untangle myself.

Don’t let your pancreas stop you! T1Ds can do anything. It just sometimes requires some extra planning

A piece of advice I would give is prefill a reservoir when you need to do a pump site change while out. That way your aren’t carrying a vial around.”



Jeanmarie

 
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Age: 13 Year Diagnosed: 2016 Location: Nashville, TN

“At school I have to bring a friend to the bathroom and I also have to use the bathroom a lot because diabetes. So I was walking to the bathroom and one kid from school (everyone knows he’s a jerk) says, “ Why do you have to go to the bathroom so much? And why are you going with her?(in a snooty voice)” And so I proceed to explain every detail about my pancreas and kidneys and my blood turning to syrup when my blood sugar is super high. You could say I freaked him out.

A misconception I wish I could change is that they did something to cause if or even worse, that it’s not that big of a deal.”



Dan

 
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Age: 26 Year Diagnosed: 2016 Location: Westmond, IL

“A funny story…other than losing my beetus bag 4 months into being diagnosed, probably the constant comparisons I do against soccer moms because I buy more apple juice and snacks than they do.

Allow yourself to relax prejudices and open your mind to ease yourself from the anxiety of managing diabetes. At first it can seem overwhelming and this uphill battle seems like it will never end. But If you focus on your happiness and balance, and allow yourself to try new things or read something you normally wouldn't you'll gain another perspective. And another perspective means another outlook on diabetes. And now I can't help but see only the silver linings in this disease and nothing else. It's just another facet, like my glasses.”



Cherise

 
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Age: 38 Year Diagnosed: 2004 Location: Noblesville, IN

“Diabetes is a pain in the butt and is consistently inconsistent. Some days it will knock you down, but you have to make sure you pick yourself back-up. Don't allow diabetes to steal your joy. And remember YOU are more than the number that you see on the meter or CGM graph.”


Liang

 
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Age: 31 Year Diagnosed: 1991 Location: Seattle, WA

“Someone (much older than me) once asked me if I could live without technology (my iPhone, email, etc) and I told him "well, no, because I have a medical device linked to my Bluetooth." But it really surprised him and he didn't know what to say... don't think he was expecting that answer!

Diabetes can feel so isolating. I used to feel that way all the time. A lot of people thought I was "embarrassed," but that's not what I was feeling. I just wanted to feel like I was a part of something, not alone and that I could talk about it to other people and they could relate to me. With the internet and social media, it makes it so much easier to search for and find other T1Ds. It has helped me immensely!

Don't feel at the mercy of your meter/CGM. Of course, that number matters but think of it as a tool to help you better manage your health. No matter what that number is, do not let it make you feel controlled or badly about yourself or your health.”


Kerri

 
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Age: 39 Year Diagnosed: 1986 Location: Rhode Island,

“Just because we don’t look sick doesn’t mean we don’t deserve a cure. We might make this diabetes thing look easy, but it isn’t even close to easy. There’s no rhyme or reason to this disease, and even with the best care and the best intentions, complications can sometimes still come calling. And their effects are devastating. Diabetes, of all kinds, deserves a cure. No one asked for any of this. We deserve better than society thinking that diabetes isn’t worth their attention. We deserve, we fight for, and we advocate for a better life, better health outcomes … we deserve a fighting chance for a cure.

I wish I had known, in that moment of diagnosis, that it was going to be okay. There are ups and downs with everything, and diabetes is part of that ebb and flow, but there is life to be lived — a good life — even with diabetes. I have some extra issues to deal with as a result of this disease, but I will be okay. I need to remember that, especially when I feel overwhelmed now, as an adult. I can’t lose hope, even in that cure that’s been promised to me five times over now. And I can’t, for crying out loud, let any kind of pity party overtake who I am. I wish I had known that I CAN eat that, and I CAN do that, and I CAN work there, and I CAN love him, and I CAN be loved back, and I CAN be happy. I need to remember to go DO and BE without fear of this condition.”

Sophie

 
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Age: 26 Year Diagnosed: 2014 Location: Chicago, IL

“I honestly wish people knew how difficult it is. I think because diabetes is so common in this day & age (T1 & 2) people assume that it's easily managed. Although we have many tools to use to our advantage, even on our best day things sometimes don't go the way we want. I also wish people knew about diabetes burnout. Along with everyday stresses, work, relationships, life we have to constantly think about our blood sugar & what we're doing that could potentially effect it. It can get exhausting and it's really important to recognize when we need to take a break to focus on our health.


Looking back on when I was diagnosed to now I'm really proud of how far I've come. I was shocked, angry, & depressed when I was first diagnosed. It took me time to realize what my new normal was but with the support of my family I was able to take care of myself. I know my diabetes isn't always under the best control but I work really hard to keep my A1C at a good number & make my life as stable as possible! It also helps to be involved in the T1D community with great people!


Although I've gained a ton of knowledge over my last 5Y I would say my biggest piece of advice is to take one step at a time. There is so much thrown at us when first diagnosed that it feels like drinking from a fire hose. Making a few small changes is a great way to start. Diabetes care becomes integrated in your life overtime but, starting with a few things can make it easier. I know I cut back on empty carbs like muffins, chips. I also made it a point to go on walks more when my sugars were high. Starting with anything can make a big difference!”


Ben

 
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Age: 27 Year Diagnosed: 1999 Location: Tampa, FL

“There's so many misconceptions I wish I could change...I still love that people think we can't eat anything delicious, and lord forbid you ever have dessert or something sweet. I also love when people say, ‘wait...but you're not fat!’ You can't fix stupid.

You are WAY more than your numbers. It ebbs and flows. One day of tough blood sugars doesn’t define you, but at the same time, one day of in-range blood sugars doesn’t define you either. Focus on winning EACH DAY - add those days up and suddenly you're absolutely crushing it.”