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.”



Alison

 
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Age: 33 Year Diagnosed: 2003 Location: Milwaukee, WI

“I think I’m usually expecting more of a rise out of folks when I shovel handfuls of gummy candies into my mouth at a concert. I listen to a lot of music where fan’s gummies are usually, ahem... ‘medical’ in another sense. Getting a “high” alert on my Dexcom is a whole different thing for me!

I find myself trying to correct people online all the time when they make super weak ‘this’ll give me diabetes’ jokes. Even DM’ing well known comedians telling them ‘c’mon, you’re funnier than that.’ It feels like we should be past those at this point — a little education can go a long way. I can eat whatever I want to eat, do whatever I want to do (well, within reason, I’m a rule follower generally.) I wasn’t always open to talking about diabetes with colleagues but quickly realized that answering questions and making sure people I was spending a lot of time with knew the most they could would only be helpful in the long run.

It’s been interesting trying to connect to the T1 online community in the last few years — figuring out the balance of who’s advice feels right and when it feels too much like a Dexcom competition. I was diagnosed at 18 and went to college a few months later, and was basically on my own to learn what I needed and was sort of rogue for many years. Now at 33, I’m learning how to reach out for help and advice, realizing I don’t have to do this alone. But, as with everything with this disease - it’s a balance! It’s not a competition and everyone’s experiences are different and valuable.

To quote Phish, my favorite band: ‘Just relax you’re doing fine.’ Diabetes is a marathon, not a sprint. If you eat the same thing every day, you may get totally different results. So, just take it one step at a time, you probably won’t nail it every time, and it’s ok. You’ll get it!”





Ryan

 
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Age: 32 Year Diagnosed: 1989 Location: Philadelphia, PA

“I want to change peoples view that if a person with Type 1 Diabetes can handle this disease they can handle anything that life throws at you. We are more detailed in life and have to see ten steps ahead. We are not alone in this fight.”


Jill

 
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Age: 26 Year Diagnosed: 2007 Location: Kenosha, WI

“When I was newly diagnosed at 14 a friend and I went to Six Flags alone. Her mom packed me a lunch but when we got there the security guards wouldn't let me take it inside. I was so new to it and very non-confrontational that I didn't want people staring at me so I didn't argue or even explain that I was a diabetic and I needed it, I just threw it away and we went in. A couple hours later my sugar was low, but because I threw away my lunch and we hardly had any money we had to go around asking people for quarters so we could scrounge up enough money for one of those big chocolate chip cookies. I got the cookie and everything was fine, but looking back now I wish someone had told me to stand up for myself when others weren't giving me the space to do so. I still struggle to stand up for myself sometimes, but when it comes to diabetes I no longer have a problem telling people when I need their help or just educating them when the subject of my gadgets comes up.”


Paulius

 
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Age: 25 Year Diagnosed: 2001 Location: Chicago, IL

“My brother was planning to have people over at his house and I completely forgot about it. I'm lounging around the house in my underwear, cook a nice meal, clean up, and lay my supplies out on the table. As I'm injecting the garage door opens up and everyone starts walking in. I completely froze for a moment because I knew it was a disturbing image to see, a dude in his underwear with a syringe in his hand.

Don't separate yourself from diabetes. It's part of you, the best way to approach it is knowing that it's second nature like going to the bathroom or walking. Separation = running away/denial”


Paloma

 
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Age: 29 Year Diagnosed: 2013 Location: Scottsdale AZ

“The misconception that I wish I could change about Type 1 is that it is not that serious. People think that if you just make better food choices, life is easy. most people have no idea that even with the best food choices, I still have to prick myself on my fingers, on my arms, on my stomach. It is NOT easy to live with Type 1 but it is still achievable to thrive just like anyone else.


When I was first diagnosed, I felt so alone. I thought I was the only person in the world with Type 1. After 2 years of feeling sad, lost, and alone, I created the persona @GlitterGlucose to connect with others who also live with diabetes. My whole world was opened up. For the 1st time I felt like I belonged somewhere. It was the first time I ever heard of a CGM or a pump! I have to give so much credit to the diabetes online community for helping me through my toughest time!”


Dana

 
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Age: 25 Year Diagnosed: 2002 Location: San Francisco, Ca

“One thing I've learned from working in the Type 1 diabetes community is that there's no one way to live with T1D. I love meeting other people with Type 1 and knowing that we have this really specific life experience in common - but through meeting people with T1D I've also learned a lot about the ways we differ. There's no one right treatment method, diet plan, dosage, or tool to use if you live with Type 1 diabetes. I've become much more open minded about what it means to live with diabetes, and know that MY experience with Type 1 isn't THE experience of having Type 1. Like many before me in the diabetes community have said: "your diabetes may vary" - and I love that about the diabetes community. I've lived with Type 1 for almost 17 years, I've worked at Beyond Type 1 for more than 2, and I still learn something new about diabetes every day. I think that's awesome! “


Nick

 
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Age: 25 Year Diagnosed: 2016 Location: Chicago, IL

“A misconception about living with diabetes I wish I could change is the common perception that the disease only affects the type of foods we get to eat. Not only can Type 1 Diabetics make their own decisions on the food they consume as long as they understand what its doing to their bodies and how to treat it with insulin, but living with Type 1 governs every aspect of our lives that others cannot see. It doesn't stop and it never slows down. Every other thought throughout my day is thinking 3 steps ahead to make sure I get cooperative blood sugars. I'm a very active person so I'm constantly checking my CGM, thinking about what I need to do to not crash or spike depending on what's lined up for the day and countless other factors.

I think Type 1 Diabetics need to stand up in their everyday lives for the invisible disease that nobody else can see. I've plead for a cup of lemonade at a closed down concession stand after a concert, learned how to talk with TSA and walk up during pre-board to tell an airline that I'm getting my medical supplies on, and most certainly do not accept a cup of coffee that isn't black. Be the advocate that you need in order to live easier with Diabetes.


At 22 I had just graduated college, I was starting a new job and I was ready to try and find my place in the world. After a solid month of my past-self slowly melting away I was diagnosed with Type 1 and a new life ensued. I gained my health back, started listening to various diabetes podcasts, read some books and slowly got the low down on eating, understanding how insulin works to get ahead of the lows and highs and gaining confidence to live the way I wanted again. This is NOT to say it didn't take a fair amount of time. I can't speak on behalf of those diagnosed as children or teens, but I can speak to those diagnosed as young adults. I curled myself into a depressed ball of low self worth for an entire year, but through that time I built the mindset of acceptance and personal growth. It takes a while to set in, and it most certainly took a while for me, but a time came where the darkness lifted and I was living with Diabetes, not a tragedy. “


Kenny

 
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Age: 28 Year Diagnosed: 2003 Location: Philadelphia, PA

“A situation that happens often is countless people confusing my pump with a pager. It's 2018.

I don't like people thinking that I ‘can't’ do something because of diabetes. I don't, and won't, let diabetes ever get in the way of me living my life to the fullest. THAT is how I beat diabetes.

Simple, but the most important piece of advice in my life: CGM. Not delaying putting a new sensor on has been the biggest difference maker in my life.”



Molly

 
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Age: 23 Year Diagnosed: 1999 Location: Barrington, IL

“For the first time in my life a professor questioned my ability to succeed due to diabetes. The first week of my Masters program he asked me, “Do you really think this is the best idea for you with your condition? It will be physically and emotionally taxing for your entire career and you can drop out and get all of your money back in the first few weeks of the program.” Mind you I was prepared for the program and just as equip as anyone else and gave him no reason to question me. I was just letting him know I had diabetes. Ive never gotten that response before and I looked him and told him I have never had a problem before and I will be the best nurse you have ever seen. Now I am at the top of my class and I was the only one to get a 100% on the last exam!

Never let someone tell you that you are less because you have diabetes!! You are strong and just as capable as anyone else!”