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Beyond Diagnosis

Community Guide

Getting diagnosed with diabetes sucks. 
We’re making it suck less.
A diabetes diagnosis is a lot to process, but this community has your back.

We asked people living with diabetes for advice they’d give to someone newly diagnosed. The result? Encouragement and tips from more than 1,800 years of collective lived experience.

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"Be patient with the learning process."

Coreen Mayerhofer

Living with type 1 diabetes since September 2, 2024

Learning & Basics

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"It's not the end of the world. [When I was diagnosed,] it felt so all consuming and restricting until I did some research and found some creators and information online that made [diabetes] feel less restrictive. I’m still really new to this and still learning and dealing with a lot of emotions, but I do wish I wasn’t so worried about asking a million questions at the start. It’s okay to not know everything about a condition I had never thought I’d have to worry about. Ask the questions. They aren’t stupid. Learn from other sources of people with diabetes. Sometimes you need to hear it from someone else [who lives with it too] to really understand and have it make sense."

Clodagh Buggie

Living with type 1 diabetes since July 30, 2024

Learning & Basics

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"Go to your doctor appointments and ask questions."

Tammy Wilson

Living with type 2 diabetes since May 2, 2024

Learning & Basics

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"Even though you might feel alone after being diagnosed with type 1 diabetes, it is important to remember that you aren't! When I was first diagnosed, I felt alone and that nobody understood what I was going through. Eventually, I saw that many celebrities, athletes, and many other people are still thriving after their diagnosis. This inspired me to not let my diagnosis stop me from reaching my goals, and I hope this inspires you too! Having diabetes is a full-time job, and I know that sometimes it can be overwhelming, which is completely normal! It is important to find a community to help you manage this stress and be able to relate to others going through the same thing. Participating in camps for diabetics, going on walks to raise awareness, participating in studies, and other events are great ways to find a community of other diabetics to help you manage it. I am so grateful to have such a strong support system of family, friends, healthcare providers, and the T1D community to help me! Remember that your health is the number one priority and that it is important to take care of yourself, mentally and physically, to manage your diabetes. Remember that your healthcare providers and T1D community are there to support you through your journey!"

Katarina Lewis

Living with type 1 diabetes since April 27, 2024

Learning & Basics

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"If you think diabetes will stop you from going out or eating your favorite food you are wrong! Just have some patience and self-control for some time. You will learn and you will be able to go out, do what you want and eat what you wish. I'm only a teen, but diabetes doesn't stop from eating ice-cream or chaat. Believe in yourself!"

Samriddhi Mishra

Living with type 1 diabetes since November 9, 2023

Learning & Basics

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"You need to be brave! Right after the diagnosis, everything feels like a first time again and it might be scary to face it. The first time you go out to eat with your friends, the first time you go for a run, the first time you try to bolus for a new food. It will be like that for a while and it is normal to feel a bit anxious about it. But be brave! Don't let the fear of what might happen prevent you from pursuing what you want to do. Of course, take things slowly and be careful—it is a whole adaptation process—but don't stop living your life."

Alejandra Peña Duarte

Living with type 1 diabetes since June 24, 2023

Learning & Basics

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"Join webinars where the experts are there to help you."

Joseph I Bonilla

Living with type 2 diabetes since March 9, 2023

Learning & Basics

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"Take each day at a time and don't be too hard on yourself! Join online forums, they've helped me so much."

Jessica Webber

Living with type 1 diabetes since March 18, 2022

Learning & Basics

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"It’s important to put yourself first from now on. Eat great things, treat your mind and your body with love and care. When you take care of yourself, life can be great! Remember rest and recovery is always key in life, so remove the word lazy from your vocabulary. Go for a walk, move your body and ease your mind. We are a community as one and we are here for each other."

Jenn Marino

Living with type 2 diabetes since March 15, 2022

Learning & Basics

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"No matter how people talk to you about your diabetes (any type), it is not your fault. There is a lot of discussion around diabetes, like with your care team or with family members, where the misconception or rhetoric is that you have caused this due to some lifestyle failing or bad choices or that you are continuing to make bad health choices. There is guilt and shame and fear, but diabetes is way more complex. While lifestyle improvements can help make your management easier and are good for you regardless, it is not the cause or the cure. You are not alone and living with diabetes is not just a "problem to solve." You are not a problem to fix."

Monica Vogel

Living with type 1.5 diabetes since January 24, 2022

Learning & Basics

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"Ask, ask, ask questions!"

Nancy Suarez

Living with type 1 diabetes since September 7, 2020

Learning & Basics

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"Don’t give up! It’s really hard but don’t let diabetes make you upset or burnt out, accepting it and making it a part of you helps you thrive with it. Also surround yourself with people who don’t treat you differently just because you have diabetes, real friends will accept you no matter what!"

Chloe Borneman

Living with type 1 diabetes since April 6, 2020

Learning & Basics

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"Try to get back to your usual routine and activities soon after diagnosis; it will feel less overwhelming if you have some sense of normalcy in life. It will be really hard at first, but it gets better. As type 1 diabetics, we can still do EVERYTHING, it just takes some extra planning."

Maia Bickert

Living with type 1 diabetes since December 26, 2015

Learning & Basics

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"I was afraid to go out and do regular things at first—walk, cycle, etc.—afraid I would crash. Don’t let it control you, make your diabetes work with you. Figure out what an emergency kit is for you and have it in you purse or backpack. Have multiple ones. This disease doesn’t have to stop you; use it as motivation to do the things you want to do!"

Leannah Fidler

Living with type 1 diabetes since September 18, 2015

Learning & Basics

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"Lean on people in your life! It’s easy to feel like you’re alone managing this disease but the reality is there are people who want to help! You have community in your friends, family and even in resources like Beyond Type 1. I ran the NYC marathon with Beyond Type 1 in 2019, just 4 years after my diagnosis. Running a marathon is something I didn’t know I was capable of, especially after diagnosis but seeing all these other people accomplish it with the same disease inspired me so much I had to put my best foot forward, literally. Diabetes is hard, it’s 24/7 and it can be all encompassing but when it gets too rough, remember to take a deep breath and know that everything will be okay."

Amanda Jaguden

Living with type 1 diabetes since September 11, 2015

Learning & Basics

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"You are not alone in this journey, and there are millions of people that went through the similar shocking diagnosis and struggled in the first few months of diagnosis. We have great technology and support that is available now more than ever that will make diabetes management easier and will reduce complications. Connect with local support groups. Know your diabetes rights at school and work. Diabetes will not stop you from doing anything that you are doing now or dreaming of doing in the future."

Pranav Raju

Living with type 1 diabetes since September 10, 2015

Learning & Basics

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"When you feel like you're struggling with keeping your blood sugar up or down, remember you are doing the best you can. We aren't meant to control this manually, but we can. It's normal for your body to fluctuate and that's not easy to control!!"

Rachel Lawson

Living with type 1 diabetes since July 24, 2014

Learning & Basics

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"I was told that diabetes is like being handed a newborn baby that you can never have anyone babysit, hold for you, or put down. That may be true but you're still not alone. 💙"

Paige Burns

Living with type 1 diabetes since January 7, 2014

Learning & Basics

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"Listen to your body! YOU are the one dealing with this everyday; no one knows your symptoms and sensitivities more than you do. Of course you have to listen to your doctor but make your own voice be heard."

Sol Labayen Orengo

Living with type 1 diabetes since April 7, 2012

Learning & Basics

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"The advice you are given about living with diabetes, is for the most part, things you needed to do anyway. Put yourself on that TO-DO list and make it happen!"

Dottie Bitterly

Living with type 1.5 diabetes since December 17, 2011

Learning & Basics

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"At first, you'll need to rely on doctors, physician assistants (PAs), nurse practitioners (NPs), certified diabetes care and education specialists (CDCESs), registered dietitians (RDs), and others who know more than you, but you'll see most of these people 10-20 minutes at a time a few times a year. So you need to educate yourself about diabetes: from what causes it, to how it's treated, to the technology available to help treat it, to what to do if you get admitted to a hospital for diabetes or something else, to how to travel with the treatments you select. So be your own advocate and the captain of your team! You will live with T1D or T2D 24/7/365 for the foreseeable future. Medical folks have a broad spectrum of knowledge, but they rely on their training and it isn't always current. Others may mean well, but they don't always fully know the current best practices. You will live with the actions you take or allow others to take on your behalf. For that reason, you need to be the captain of your team, learning what works and why as quickly as you can. Rely on others when you don't know, but then go do your own research, because you're going to live with the results. What are the best glucose meters, types of insulin, insulin pumps, continuous glucose monitors, etc. Right now, it seems and is daunting, an incredible climb up hill. At the same time—and somewhat counter-intuitive—you also need to realize diabetes is a marathon, not a sprint. So hurry up and take your time!"

Tom Holz

Living with type 1.5 diabetes since November 8, 2010

Learning & Basics

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"Try not to put so much pressure on yourself. It’s a lot and I know it can be tiring. If you can, get a continuous glucose monitor (CGM) and an insulin pump—it will make your life so much better. And don’t let people try to talk you into hiding them. Wear what you want!"

Shayla Lewis

Living with type 1 diabetes since February 4, 2010

Learning & Basics

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"Don’t be afraid to ask for help."

Yasmeen Omar

Living with type 1 diabetes since November 28, 2008

Learning & Basics

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"T1D is a journey, not a destination. It's important to focus on the mental health of the entire family and establish local community connections with families traveling the same journey as you. Take time to adapt T1D to your life, not vice versa."

Saige Merwin

Living with type 1 diabetes since July 11, 2008

Learning & Basics

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"No matter what anyone and I mean ANYONE says, this is not your fault. You did not give yourself "the sugars", this is a progressive disease causing your treatment plan to change sometimes, GLP-s (or other medications) do not mean you are cheating and going on insulin does not equate to you failing. It is possible to live and thrive with diabetes!"

Jacquean Kosh

Living with type 2 diabetes since April 18, 2008

Learning & Basics

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"Take your diagnosis seriously. Learn all you can and try diabetes classes. YOU CAN DO THIS!"

Julie Smith

Living with type 1 diabetes since May 10, 2004

Learning & Basics

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"When I was diagnosed I wish I knew how much freedom you gain when you utilize the advances (i.e. CGMs and insulin pumps) in treatments. I wish someone would have encouraged me to focus on the solutions not the problem because living with T1D just means getting to know yourself better and the opportunity to focus on your health. I also wish someone would have told me to find support groups of people living with T1D because the community is very supportive!"

Marla Bennett

Living with type 1 diabetes since December 12, 2001

Learning & Basics

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"Always be patient with yourself."

Kennedy Washington

Living with type 1 diabetes since November 7, 2001

Learning & Basics

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"Don’t compare your diabetes journey to anyone else. Figure out how your body works and what diabetes looks like for you. Everyone has bad days, you’ll be okay, I promise!"

Jill Purvis

Living with type 1 diabetes since April 10, 1998

Learning & Basics

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"When I was diagnosed, I didn't know how to answer the question "How do you feel?" Physically, I hadn't felt great in a long time, and I had no vocabulary for how I felt emotionally, so I didn't have any idea what "good" felt like. I wish I had known how to dial in my awareness of how I felt, but that took another decade or more for me. Then and over the years, I was glad my providers told me "We can teach you how to control your blood sugar for "almost anything you might want to eat." But we didn't talk much about how some foods make me FEEL better than others. 30 years later, I'm still working on making the best choice for my long-term health and life goals rather than choosing based on cravings or comfort from food. Tuning in to whether I feel hungry or bloated, foggy or clear-headed, stiff or limber, stuffy or breathing free, tired or energized, hopeful or resigned, angry or joyful gives me great data on my diabetes management, but only if I keep great notes and look at my records with my providers. Otherwise it's easy to explain my physical sensations and emotions away too quickly as work stress, hormonal changes, the weather, or things out of my control and forget that it's even possible to feel better."

Kate Sudarsan

Living with type 1 diabetes since April 14, 1994

Learning & Basics

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"Learn how to count your carbs, [proteins and fats] correctly. Diabetes is definitely a roller coaster ride but if you're patient and kind to yourself the numbers will reflect that."

Shannoni Joniak

Living with type 1 diabetes since April 5, 1993

Learning & Basics

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"There is no such thing as perfect. Do your best—ask questions, learn, be part of a community that can help you. This is a tough road, but it will get easier and more manageable. It's ok to be overwhelmed, mad, sad—feel all the feels and allow yourself to sort through the emotions. As soon as you figure something out, it will change! So, be flexible."

Karen Hogan

Living with type 1 diabetes since April 5, 1986

Learning & Basics

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"Stay strong."

Bob Maselek

Living with type 2 diabetes since June 4, 1980

Learning & Basics

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"Don’t think you have to know everything right now. Ask for help with what’s important and focus on that. The rest will come with time. Don’t get frustrated if someone tells you what works for them and it doesn’t work for you. We’re all different and respond a little differently to things."

Tom Shearer

Living with type 1 diabetes since December 9, 1974

Learning & Basics

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"You are the only one who knows your body and how you feel. Be your own best advocate."

Rosemary Jaffe

Living with type 1 diabetes since January 25, 1962

Learning & Basics

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"Your diabetes is as unique as you are—no two bodies respond the same way, so take time to study your patterns. At first, it might feel overwhelming, especially if you're given little guidance, but remember: the more you understand your biology, the more power you have over it. I took an honors biology class just to understand how my body works, and it changed everything for me. Even if you can’t access advanced tools like pumps or CGMs, you can thrive by mastering the basics and building a routine that works for you. Diabetes is tough, but it doesn’t define you—it simply challenges you to rise above and become an expert on yourself."

Raheen Fatima

Learning & Basics

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"If you have a strong family history of diabetes, advocate for genetic testing. Maturity-Onset Diabetes of the Young (MODY) is often misdiagnosed as type 1 or type 2 diabetes. Having the correct diagnosis can help you and your doctors manage your diabetes more effectively."

Christine Ohrenberger

Learning & Basics

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