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What’s Your Number One Piece of Advice for People with Diabetes?

By Jeemin Kwon and Kelly Close

We asked diabetes experts for their advice for people with diabetes. They emphasized being your own advocate, finding community, technology, and always asking questions

diaTribe’s network of doctors, diabetes educators, and researchers have over 1,000 years of collective experience helping people with diabetes live better. To commemorate diaTribe’s 200th issue, we asked this diverse range of experts, “If you could give people with diabetes just one piece of advice, what would it be?”

Below, you’ll find all of the responses, grouped by different topic areas. A majority of the inspiring and actionable responses focused on having a learning mindset, self-care, and finding supportive friends, family, and healthcare providers. Answers also spoke to the incredible growth in diabetes technology, specifically continuous glucose monitoring (CGM), and research on diabetes complications and how the disease progresses. The most important takeaway? Always ask questions. Whether it’s about what your healthcare team is doing for you, what you could be doing differently, or what the newest devices are, knowledge is a powerful foundation for change.

Ask Questions and Be Your Own Advocate

"As healthcare providers, we have to become experts in hundreds or more cases of diabetes in order to achieve the best outcomes, while people affected with diabetes have to become expert in one case – their own! The wonderful news is that it is now possible to do this and the available tools and resources make excellent outcomes generally possible." – Dr. James Gavin III (Emory University School of Medicine and Healing Our Village)

I would tell people with diabetes to learn as much as they can about diabetes and how to control it. Be informed and ask questions of your health care team. Having diabetes is challenging but it can be controlled.” – Dr. Nichola Davis (NYC Health and Hospitals)

“Sadly these days I would say that everyone living with diabetes [in the USA] who takes insulin must know how to survive on any kind of insulin, since costs and insurance companies are making life with insulin more problematic than ever. My second point is that everyone must know how to be their own advocate because nothing about diabetes is easy and those who work the hardest to get the tools and treatments they need do the best. Knowledge is key as well as not being afraid to stand up for what matters.” – Dr. Anne Peters (Keck School of Medicine of USC)

“Do not lose hope! Let yourself be helped by the best medical specialist teams around you, live healthy and strive for tight glycemic control. Do not let diabetes rule your life, but find a spot for it, so that you can live a good life with this disease. Push researchers to do their best to find a prevention and a cure for this bag of diseases! Push politicians to provide good diabetes therapy for all and to put more funds in research so we can beat diabetes together.” – Dr. Chantal Mathieu (Katholieke Universiteit Leuven)

“Visualizing on a regular basis what your blood sugars are doing on its own is probably not enough, however good a CGM system – having the knowledge to act on them is a key component. Put them together and life changes. It’s not enough to have the keys to a Ferrari. You need to know how to drive it too.” – Dr. Partha Kar (Portsmouth Hospital, NHS)

"I want every person with diabetes to advocate for their health. In addition to efforts to improve blood sugar control, I encourage people with diabetes to ask their health care providers what they can do to get their blood pressure below 130/80 and LDL-cholesterol below 100, recognizing that medication is usually needed to achieve these targets. Additionally, if they have type 2 diabetes with heart disease and/or kidney problems, they should ask about diabetes medications that have recently been shown to lower their risk of worsening of heart and kidney problems." – Dr. Carol Wysham (University of Washington)

“Learn about yourself, learn about your diabetes, and take control of your destiny because YOU CAN!" – Dr. Alan Moses (Member of The diaTribe Foundation Board of Directors, former Global CMO of Novo Nordisk)

“You have the main responsibility for your diabetes. You are your own best advocate – be smart and be persistent. Embrace diabetes, make it part of your life, become more insightful and stronger for having it, and do not let it prevent you from doing anything in life.” – Dr. Steve Edelman (UCSD and TCOYD)

“Know your blood sugar! Information is powerful. Even if you don't like it, you can always fix it! Being successful with diabetes is like anything else: take a middle ground. Ignoring it is a recipe for disaster, but having it take over your life can be even worse. Don't get frustrated over individual blood glucose levels or even A1C levels you don't like. Just try to do the best you can. In the end, you will more likely than not be very successful.” – Dr. Irl Hirsch (University of Washington)

“No apologies, no stigma! I find that the people who are most open about their diabetes with their community and the most accepting of themselves are able to be the healthiest – by which I mean they manage their diabetes in a way that allows them to live their best lives.” Dr. Urmimala Sarkar (UCSF)

“Never stop learning. See your diabetes educator, ask them about local support and education groups check out web-based support and education, don’t forget migrating organizations like TCOYD! With so much continued new stuff out there, it’s more important than ever to keep ourselves informed. Spread the word about diaTribe!” – Gloria Yee, CDE (Sutter Health)

Be Kind To Yourself

“When your glucoses are in target, take credit. When your glucoses are out of range, blame the diabetes and vow to make better choices tomorrow. Set goals for your diabetes self-management that are realistic and attainable given all of the other competing demands in your life. Perfectionism in diabetes self-management is a recipe for frustration, demotivation, and disengagement. With the increasing use of CGM and the focus on time in range (a daily report on success and failure!) – I think this message is even more important.” – Dr. Howard Wolpert (Joslin Diabetes Center)

“Never ever let your diabetes get in the way of achieving your dreams. It can even be a positive force in your life, encouraging you to focus your energies and take care of yourself – diabetes can make you stronger. And please don't be too hard on yourself; you'll have good days and bad days, just like everyone!” – Jeff Halpern (Abbott Diabetes Care and Member of The diaTribe Foundation Board of Directors)

“Good self-care is the key to successful diabetes management, since diabetes management is for the most part self-management. As health professionals, we will give you the best tools and the best lifestyle advice, and spend whatever time it takes to help you use them. However, you live with the condition 365 days a year, and we interact with you for only a small fraction of that.” – Professor Philip Home (Newcastle University)

“It's not your fault that you have diabetes; you didn't do anything wrong. You are a good person and by identifying and using your strengths you can manage your diabetes and live well with it.” – Dr. Jane Dickinson (Columbia University)

“You must become the master of “starting over.” We will never get everything right every time, maybe not even one out of ten times, so you have to be able to start over. It's okay to start over and try, try, and try again. You may have to take a deep breath and start over on your diet, exercise plan, checking blood glucose, taking medication, etc. But it's okay – none of us is perfect. Start over, take a breath, take the first step to get back on track, and just keep going forward.” – Virginia Valentine, CDE (Diabetes Network, Inc.)

Find a Support Network

“Don't trust anyone who thinks they can offer the same advice to everyone. What works (or applies) for some may not work for others. Management of diabetes must be tailored to each person, so find a healthcare provider who respects and appreciates you as an individual!” – Gary Scheiner, CDE (Integrated Diabetes Services)

“Surround yourself with a community of people who will support and lift you up on your diabetes journey: family, friends, and diabetes care team. Remember, you are the expert for your diabetes. Having open mind and willingness to try new things will lead to self-discovery.” – Dr. Dan DeSalvo (Texas Children’s Hospital)

“Be hungry; find someone else living with diabetes. Be part of the community. There is no better way to try and make things better than by talking to someone who has a lived experience, or just to have someone who would listen. And understand.” – Dr. Partha Kar (Portsmouth Hospital, NHS)

“If at all possible, don't do diabetes alone. Managing diabetes day after day is so much easier when you have people in your life who are rooting for you. So think about what you need and who you could ask. Reach out to a good friend, a family member, a neighbor, a coworker, or even someone you meet through social media. It can be anybody!” – Dr. Bill Polonsky (Behavioral Diabetes Institute)

Transfer Some of the Burden onto Technology

“Great advances have been made in continuous glucose monitors, which have evolved to a very mature state where accuracy is high and calibration with a blood glucose meter is not necessary. My advice to people with T1D (or T2D using insulin) is that if you don’t already use a CGM, you should get one. If you tried an older generation CGM and discontinued it, give it another try with the current generation CGMs.” – Dr. Roy Beck (Jaeb Center for Health Research)

“Everyone taking multiple daily doses of insulin, whether through a pump or by injection, should be using real-time continuous glucose monitoring. Partial automation of insulin delivery based on CGM can be very useful, both improving glucose control and quality of life. When choosing a CGM or a pump don’t rely entirely on the advice of health care providers – be sure to find out how users feel about the technology and decide what is the best fit for your lifestyle.” – Dr. Steven Russell (Massachusetts General Hospital)

“Not knowing your blood sugar is like crossing a highway with your eyes closed. Wearing a continuous glucose monitor (CGM) is your GPS for crossing the road safely. CGM is a game changer for people living with diabetes. Whether you wear a professional version from time to time to guide regimen adjustments or have a personal CGM, you have the power to make informed decisions.” – Dr. Jane Seley (New York Presbyterian Medical Center)

“I remain convinced that looking closely at your CGM based glucose patterns (AGP) and responding to them in a logical way remains the most important thing you can do to remain healthy, happy and safe regarding your diabetes management.” – Dr. Rich Bergenstal (Park Nicollet International Diabetes Center)

Be Proactive

“Now, in 2019 we can be certain that type 2 diabetes only develops when a person has become too heavy for their own body. We have shown in 3 major studies that losing about 30 pounds in weight stands a 9/10 chance of seeing YOU return to non-diabetic blood glucose levels - if you are in the first 6 years of diabetes. You may still reverse to long-term normality with longer duration diabetes, although the chance is rather lower.” – Dr. Roy Taylor (Newcastle University)

“Learn early to think like a pancreas.” ­– Dr. Barry Ginsberg (Diabetes Technology Consultants)

“Pay attention to what you eat. Have an activity plan. Know your glucose.” – Dr. Jay Skyler (University of Miami)

“Take the responsibility for managing your type 2 diabetes. Learn about the treatment options that reduce the risk of heart and kidney complications. Ask for, in fact, demand the kind of care that emphasizes the importance of preventing these common and morbid consequences of type 2 diabetes. We live in a new world where treatment options really matter.” – Dr. Mikhail Kosiborod (St. Luke’s Health System)

“We now have evidence of CV-protective glucose-lowering approaches for people with diabetes and ASCVD: both SGLT2 and GLP1 reduce CV mortality, GLP1 and TZD reduce stroke, all three reduce MI and have renal benefit, with SGLT2 protective against reduction in GFR. What must we do going forward? Apply this knowledge widely and appropriately!” – Dr. Zachary Bloomgarden (Mount Sinai Medical Center)

“If you’ve been diagnosed with prediabetes or type 2 diabetes your time for action is now. Take the time you need to process, grieve to handle the diagnosis. Then put a plan in place to take action one baby step at a time. Start with taking stock of your current eating and physical activity habits. Think about a couple of changes you are willing to make that you can stick with over time. You don’t need to make dramatic changes to see an impact. Losing 5, 10 pounds (5-7%) of your current body weight makes a significant impact early on in the disease progression. But, you’ve got to have a plan to keep those pounds off! Taking early action can reverse or slow progression over time. If you’re told taking a glucose lowering medication would be beneficial, don't avoid or put this action off. Research shows today's newer medications can slow progression.” – Hope Warshaw, CDE

“Take your diabetes seriously, find a health care team that really understands diabetes, and use all available technology. Good control will pay off.” – Davida Kruger, CDE (Henry Ford Hospital)

Help us share these pearls of wisdom with other people with diabetes on Facebook and Twitter! And let us know what you found most helpful here.

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