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!”


Alan

 
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Age: 31 Year Diagnosed: 2016 Location: Chicago, IL

“When my doctor first broke the news of Diabetes I was in shock and didn’t really know what to do, aside from continuing on my way to work like planned. Then it happened as I called my Mom from the train platform, the ugly crying, the snorts, the unplanned stop at Whole Foods to blow my nose and attempt composure. Diabetes gave me my ‘crying on the redline’ moment every Chicagoan needs!

As millennial as it sounds, Instagram has connected me with so many other T1Ds and honestly, along with research taught me more about managing diabetes than my endo! (sorry, Doc!)

Read as much about diabetes as you can stand, even if it doesn’t make sense yet! Reach out and connect with other T1Ds, seeing other people staying active and just coping with everyday life made a world of a difference for me!”



Marc

 
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Age: 41 Year Diagnosed: 1990 Location: Chicago, IL

“I am grateful for my diabetes. It no doubt is scary, challenging and has changed my life and long term heath but to be honest, it makes me work harder and I like the challenge of not having things easy. I'm scared of the potential long term complications and any hereditary effects on my children but diabetes is a thinking persons disease; it's analytical, it's organizational, it's planning and prep and problem solving and makes you stronger and smarter. One event i'd like to share is the launch of my startup Dropp Kitt. Dropp Kitt makes premium diabetic goods based on the belief that diabetics deserve better. Better quality, better solutions and better style. For almost 30 years as a type one diabetic I’ve dragged my diabetic supplies with me in everything from a Ziploc bag to an old leather Dopp kit. When I met my business partner everything changed. Together we designed a beautifully handcrafted premium leather case that fits in my back pocket and fits all of my daily essential diabetic supplies. The support and outreach from the diabetic community has literally brought me to tears when we sold our first unit this weekend! As a problem solver (and creator) by nature it is humbling and gratifying to see other diabetics find comfort in a little thing I created.

I would tell new diabetics to be upfront about their diabetes, if not only from a safety perspective. Let co-workers, people at the gym etc know that you are diabetic, where your supplies are and what to do in case of an emergency. I do a lot of public speaking and consulting and one of the first things I tell a crowd is "I am a well controlled type 1 diabetic but my family is not here with me today, so if you notice me sweating profusely or looking a little off tell my to check my blood" and then I show them where my Dropp Kitt and supplies are in case of emergency.”



Mike

 
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Age: 39 Year Diagnosed: 1984 Location: Metro Detroit, Michigan

“Low blood sugars are not funny per se, but the specific symptoms can be... For example, the low that I had years back where I thought my wife was an alien trying to force poison down my throat (it was simply apple cider) in order to turn me into an alien. And then the frosting gel that she tried to coat the inside of my mouth with, was an alien gel meant to paralyze me. In the moment, these are never funny. But afterward, of course, I felt like a fool even though it felt so real at the time.

Over the years, I've come to see there are so many misconceptions in the general public and within our own Diabetes Community. That is why I find it so important to share my own personal story and use my journalism skills to get correct, important information out to those who need it in their diabetes lives and decision-making. Your Diabetes May Vary and opinions on many issues often do as well, and what may be important to you may not be a top priority for another. That's why I work so hard to share stories and information in the DOC (diabetes online community).

I've never really known a world outside of diabetes, being diagnosed at age 5. I mostly consider my T1D a blessing, in that I am able to manage my own health and feel that I've learned to ‘McGyver’ healthcare in ways that wouldn't be top of mind otherwise. The fact that I can work professionally in this space and help others in the community is something that fills my heart with so much happiness.”


Neil

 
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Age: 45 Year Diagnosed: 1991 Location: Little Rock, AR

“Remember that one time when the doctor told me I could eat "sugar free" candy and I nearly erupted into an explosion that could be seen from space?! I do... (sheesh) The first time my doctor told me that sugar free candy would be better for me, I went to the store and bought it all. Sugar free gummy bears, Whitman's chocolate sampler, Twizzlers...and about 30 minutes after, I checked my blood glucose levels and all was fine. Except for a rumble in my stomach that turned pure nuclear in about 3 minutes. Spent about 5 hours on the toilet that day. Thanks diabetes for teaching me that sugar free actually costs you something. It costs you about 10yrs off the life of your colon.

We aren't victims. Don’t wear this thing like a badge…no one is against you. The drama isn’t helping any of us. So what if someone makes a joke about it on late night talk shows. Spend your energy helping people understand, not complaining about it. As far as I know - complaining has never accomplished anything, ever. Diabetes hasn’t made me a victim.

I had a chance to direct the Bike Beyond documentary and it changed my perception about what someone living with Type 1 is capable of. It completely changed my mind and gave me a new cap on what I thought this disease would restrict me to. Watching these cyclists with Type 1 absolutely crush this ride across the country is one of the most empowering things I've ever seen. Privileged to be a part of it!

I finally figured out how to calculate protein...not just carbs. The way I calculate the food that I eat - there’s a ton of medical journals & diabetes research I read - trying to figure out how to calculate protein into ‘actual carbs’ that impact my body. Multiplying the protein x .6 and adding the carb content to that...has really helped me get the numbers right.”


Celia

 
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Age: 31 Year Diagnosed: 2009 Location: Paris, France

I’ve been diabetic for many years now. At the beginning, I could say that we have to learn how to live with that new lifestyle. Then as the warriors that we are, we need to challenge ourselves. At least that’s my opinion and my goal. One year ago, I travelled to a beautiful French island called Réunion. That island is a wonderful mix between ocean, mountains, and volcanos. That trip was one of my diabetic life challenges because it was a hiking trip. We went to a wonderful mountain called ‘Cirque de Mafate’, it was something like 7 hours walking. All the way down was okay but in the middle of the way up, I started to have really bad hypo. I had blurred vision and we had to stop. I ate and drank all what I had in my backpack. It was really, really hard. I had been low for maybe one hour. My friends started to be really stressed and say that we should call a helicopter. I was stressed, embarrassed, scared and exhausted...but didn’t want to give up ! I did everything to make my blood sugar ’okay’ and continue my way up. Finally after hours walking I was the first on the top of the mountain, you can't imagine my feeling in that very special moment ! It was so emotional, I felt so proud of myself. So in the end, if I can give any advice to our wonderful diabetic community it would be ‘Never give up’. Being diabetic makes us stronger every day and we should be proud of that!

Ive been diabetic for more than 9 years, for all these years I was wondering if I could find some other diabetics, besides the ones at the hospital. Last year, I had the idea to check Instagram to see if I could find some information... I discovered this really big and awesome community ! I am so glad to know you all over the world. You guys are so inspirational and helpful and want to thank you all who share your experiences and make our community what it is.”


Anna

 
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Age: 21 Year Diagnosed: 2001 Current Location: Vienna, Austria

“A couple of weeks after my diagnosis, I went to one of my favourite art museums in Vienna and got kicked out by the security because they thought that I was injecting drugs, whereas in reality, I was just trying to bolus. This was still when I was absolutely devastated and did not know what to do, as I did not really understand what had just happened. However going through this situation made me stronger and taught me to stand up for myself and raise awareness for t1d everywhere I go.

One misconception about t1d that I'd wish I could change is "So you cannot eat that!" and "Oh, so you got type 1 diabetes because you ate too much sugar". Unfortunately the stigma of diabetes and sugar is still anchored in our society. But living with t1d isn't just about "sugar". It's so much more than that. It's sleepless nights, being frustrated and tired because you cannot get your blood sugar levels down. It's getting up at 2am, shaking, because you're having a hypo. What bothers me about common misconceptions about t1d is, that people tend to believe that they suddenly are the experts and know everything about what it's like to live with a diabetes diva and that I could simply make it all go away with a spoon of cinnamon.

If you would have told my 10-year-old-self that I'd start sharing my life on social media, travel and connect with people from all over the world, I would have never believed you. As a kid and teenager, I was a very shy and self-conscious person. Most of the time I was to afraid to speak up for myself, because I was too afraid. I was struggling quite a lot with self-doubt as I always wanted to fit in. And as weird as it sounds, I sometimes feel like my diagnosis was a blessing in disguise, as it helped me learn how to accept myself and my body & to be proud of myself and the things that I do. All the blood sugar testing and changing my infusion sets lead to me getting more and more confident in myself and my abilities. Because not everybody can say, that he/she casually took over their beta cells' job! ;) It taught me, that you do not have to change myself to please other people, but that you are perfect just the way you are: strong, brave and unique. Living with t1d made me appreciate the little things even more and taught me to be a patient with myself and my body.

One piece of advice that I'd give a newly diagnosed type 1 diabetic would be: Take a deep breath, take it slow and believe in yourself. There will be a lot of things that you'll need to learn at your new job as the CEO of your own beta cells, but you'll do a fantastic job. Take it step by step. Listen to your body. Living with t1d may be hard at times, but you got this. There will be some tough days, but you will get through this and grow even more from your daily challenges. You are stronger than you think. “

Laura

 
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Age: 30 Year Diagnosed: 1994 Location: Paris, France

“I used to dance Ballet when I was younger, and I remember going out to dance one of the pieces of the Nutcracker. In the middle of the stage, I started to feel low but because of the situation, I kept dancing until the end... or so I thought! I finally saw the videos of me doing all the steps wrong and being totally discordant in the group!

In my 26 years of being diabetic, I've probably changed my lancet about twice!”


Sarah

 
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Age: 33 Year Diagnosed: 2000 Location: Montreuil, France

“I remember one time going through customs at the airport and I always have with me a prescription which allows me to keep all my diabetes stuff and it also says that I have the right to take with me sweet drinks in case of hypo. A customs officer told me that as a diabetic I was not allowed to drink my orange juice box but just tea or water like his grandma and he just confiscated my orange juice until his supervisor told him it was ok. I remembered feeling so bad as I had to fight for something I really needed and I knew better than him what is good for me but in the end, he never even apologized for being wrong.

When my diabetes was discovered, I was 15 years old and I did not realize what was involved with it. I really did not get along with my first endo : she always yelled at me during my appointment telling me that I was lucky to be young or my kidney would have already collapsed. She was not wrong but the way she told me that didn't push me to be more careful. I just continued to eat whatever I wanted without checking my blood sugar. I remember how stressed out l I was before going to see my endo, filling my blood sugar notebook the night before my appointment. I remember my husband, Pascal, sitting next to me while I would do this, and he knew that it was better for him to not talk to me as I was so panicked that I could start crying just because I got lost keeping track of all my numbers, trying to catch up 3 months in that notebook, pretending that I've done it everyday carefully... And then everything changed: first, when I learned about carbohydrate counting and then, when the Omnipod arrived in my life and a few month later follows by the Freestyle Libre which was reimbursed in France. Those two devices allowed me to show and accept my diabetes as I did not hide it anymore. It does not bother me to wear them on my arms or that strangers ask me about them. On the contrary, It has allowed me to accept it and it helps me to educate people, to talk about it and increase awareness. It allows me to connect with people even abroad, people are curious and ask about those weird devices. I also realized how lucky I am to leave in France and have a free access to all of this thanks to the French public health care system. For example, It made me sad to hear stories about people during our travel in Sri Lanka telling us that they have lost someone in their family because of diabetes or how difficult it is to get insulin.”


Coco

 
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Age: 23 Year Diagnosed: 2004 Current Location: Paris, France

“By the time I was in high school I did not tell anyone about my diabetes. Once, in class, the teacher ask for me to go write something on the blackboard. When I came back to my seat, I saw my friend playing with my insulin pen and shouting “What the hell is this pen?! it smells and looks really weird!”. I was so embarrassed, he could not figure out what he had found in my purse. Now, we laugh about that situation a lot.

People tend to think our community deserves what they have due to a "bad lifestyle", if only they would know how much we fight to preserve our health.. That is precisely the reason why I started my Instagram @cocoandpodie. I wanted to break all the clichés and show that diabetes means needles, insulin, pump and so on. I wish I can also help and inspire other diabetics through the account because I wish someone had told me I could do anything in spite of having type one.

I have always been attracted to fashion and I will never let diabetes take that away from me. In fact, I integrated my diabetes into fashion with my Instagram account. I kind of copy traditional blogger and I put my freestyle, needle, insulin pump in the middle of an aesthetic environment. I love this mix between two universes which are normally opposed: the medical area meets art in @cocoandpodie.

My piece of advice is that: I swear your life is not over, it is only the beginning. It will be hard sometimes, you will have bad days but you will grow up with this sense of empathy, with this courage and energy that will drives you anywhere. Moreover, you enter in an amazing community with incredible people and they might be the best people you will ever meet in your life.”