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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 youāre 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. Hereās what our community had to share: * Answers have been edited for punctuation and clarity.
- āOnly one piece of advice? Educate yourself and start each day doing the best you can.āāBe patient and learn as much as you can about how to take care of yourself.ā
- āTrust 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 itās hard to imagine that you will ever return to your normal life, but you will. At some point, youāll 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.ā
- āDonāt 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, donāt fret because you get high or low. You wonāt 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.ā
- āYou 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. Itās the best thing for you, and youāll feel so much better if you do. Also, donāt fret over the occasional high or low blood sugar. They will happen. Itās just part of life with diabetes.ā
- āBlood sugar numbers are treatment tools, not a judgment on how well you are doing.ā
- ā1. 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 ā 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.ā - āI would say look for a support group at the online diabetes community near you.ā
- āYou 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 mistakesā¦learn and move on. Never be afraid to ask for help.ā
- āLearn 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.ā
- āYou only get one body. Do your best to take care of it and donāt be afraid to ask questions of doctors and endocrinologists.ā
- āDiabetes 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. Donāt give up, it is worth the effort to get the pump and CGM.ā
- āYou are not alone. Youāre not the only one going through this. Look for social media groups to join to gain support and share experiences. Donāt ever think you are āfailing.ā This isnāt a pass-or-fail type of disease. Youāll have your good days, and youāll have your fair share of bad ones, too. Donāt let the bad days get you down. Each day is a new day to reset.ā
- āGive yourself grace. Really. Be kind to yourself. Strong long-term care takes an incredible amount of self-advocacy with your care team, so itās important to keep your emotional batteries charged so that youāre able to be in the driverās seat to get the best available guidance and support.ā
- āDonāt expect perfection! You have some leeway, but you must figure out where and how much. Try to live a regular life despite diabetes. Itāll keep you much happier.ā
- āYou will be able to do this. There are many resources available and many advancements in treatments have been made.ā
- āDiabetes is not a reason to not do something.ā
- āAs a T1D parent I would encourage you to seek out one other T1D parent who you can have on āspeed dialā. While this illness is very individual, having the wisdom and support of an āin the knowā friend can make all the difference.ā
- āTell 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.ā
- āA 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!ā
- āA 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.ā
- āPatience, it can sometimes take many months, even years to get each person figured outā¦weāre all different.ā
- āDonāt 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, thereās no reason that T1D can hold you back.ā
- āFind your happy place and laugh a lot. We can live with diabetes. But we should not stop living to do it.ā
- ā1. Always be open to learning more and more about your bodyās insulin needs and the many factors that affect blood sugar. Never stop learning!
2. When things donāt go perfectly, take a minute to reflect on what mightāve caused the high or the lowā¦acknowledge it, take note, learn from itā¦then move on. Thereās no need to beat yourself up for imperfect blood sugars when youāre being asked to do something your body is supposed to manage all on its own.ā
The T1D Exchange Online Community inspires us every day! Not a member? Click the āJoinā button in your upper right corner!