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Those first few weeks, months, and years with type 1 diabetes are usually remarkably overwhelming. Too often, you might not know another soul with T1D in the early days of your diagnosis. But you’re not alone! We asked the T1D Exchange Online Community to share a piece of advice they would give to people (and their family members) newly diagnosed with T1D.
The responses were powerful. Here’s what our community had to share: * Answers have been edited for punctuation and clarity.
- “Only one piece of advice? Educate yourself and start each day doing the best you can.”“Be patient and learn as much as you can about how to take care of yourself.”
- “Trust that it will get easier. The amount of information you need to absorb to keep yourself on an even keel seems so overwhelming at first that it’s hard to imagine that you will ever return to your normal life, but you will. At some point, you’ll find that managing your diabetes is a habit that recedes into the background so you can focus again on the things that mattered to you before your diagnosis.”
- “Don’t expect perfection. The human body is way too complicated to ideally be in 100% control over blood sugars with the knowledge and technology that is now available. Also, don’t fret because you get high or low. You won’t become blind just because you hit a high number today. Get back on track and forge ahead. Remember, acute lows are worse than an occasional high.”
- “You can live a long, happy, healthy life with diabetes if you keep your blood sugar managed. That is the key! It may take some time to get regulated, but once you do, keep on top of it. It’s the best thing for you, and you’ll feel so much better if you do. Also, don’t fret over the occasional high or low blood sugar. They will happen. It’s just part of life with diabetes.”
- “Blood sugar numbers are treatment tools, not a judgment on how well you are doing.”
- “1. Electronics have improved T1D management. Use them.
2. Team up with a specialist/clinic on T1D if possible.
3. A good life and T1D is possible — you just have to keep learning.
4. I learned more about food and my functioning as a human as a T1D than I ever imagined.”
- “I would say look for a support group at the online diabetes community near you.”
- “You are your own best clinician. never stop testing or monitoring your blood sugars. Things will change, and things will not be perfect or under control all the time. You are human and you make mistakes…learn and move on. Never be afraid to ask for help.”
- “Learn all you can about T1D and always advocate for yourself. Stay in control, do not let it control you. Be realistic, the better controlled you are the better your life and health will be. There are very few things you cannot accomplish. Stay positive.”
- “You only get one body. Do your best to take care of it and don’t be afraid to ask questions of doctors and endocrinologists.”
- “Diabetes is a disease you can live with. The pump and CGM are crucial to good control and will help you or your child avoid complications from diabetes. You must advocate for yourself in order to get most health Insurance companies to pay for anything other than syringes. It takes a lot of time to jump through all the hoops and to get your Doc to document and send all the paperwork for the Prior Authorization. Don’t give up, it is worth the effort to get the pump and CGM.”
- “You are not alone. You’re not the only one going through this. Look for social media groups to join to gain support and share experiences. Don’t ever think you are ‘failing.’ This isn’t a pass-or-fail type of disease. You’ll have your good days, and you’ll have your fair share of bad ones, too. Don’t let the bad days get you down. Each day is a new day to reset.”
- “Give yourself grace. Really. Be kind to yourself. Strong long-term care takes an incredible amount of self-advocacy with your care team, so it’s important to keep your emotional batteries charged so that you’re able to be in the driver’s seat to get the best available guidance and support.”
- “Don’t expect perfection! You have some leeway, but you must figure out where and how much. Try to live a regular life despite diabetes. It’ll keep you much happier.”
- “You will be able to do this. There are many resources available and many advancements in treatments have been made.”
- “Diabetes is not a reason to not do something.”
- “As a T1D parent I would encourage you to seek out one other T1D parent who you can have on ‘speed dial’. While this illness is very individual, having the wisdom and support of an ‘in the know’ friend can make all the difference.”
- “Tell your kid you will never be mad at them about their diabetes management, and when they make a mistake, accept it calmly and work on correcting it. When your kid turns 21, turn them loose. It is no longer your business to ask about their health. If they have confidence in you, they will volunteer for it.”
- “A new T1D diagnosis may feel quite scary, however technologies and more accessible information and communities make living with it easier and easier as time goes on. The promise of additional improvements to care for T1D and quality of life for us is even more exciting!”
- “A little time will make you a diabetic expert! Give yourself that time. Diabetes is only a part of who you are, not all you are.”
- “Patience, it can sometimes take many months, even years to get each person figured out…we’re all different.”
- “Don’t let your fear hold you back. By taking care of yourself, staying in touch with your care team, and asking for help when you need it, there’s no reason that T1D can hold you back.”
- “Find your happy place and laugh a lot. We can live with diabetes. But we should not stop living to do it.”
- “1. Always be open to learning more and more about your body’s insulin needs and the many factors that affect blood sugar. Never stop learning!
2. When things don’t go perfectly, take a minute to reflect on what might’ve caused the high or the low…acknowledge it, take note, learn from it…then move on. There’s no need to beat yourself up for imperfect blood sugars when you’re being asked to do something your body is supposed to manage all on its own.”
The T1D Exchange Online Community inspires us every day! Not a member? Click the “Join” button in your upper right corner!
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