There is so much to learn when you are first diagnosed with type 1 diabetes. The sheer amount of information is so overwhelming that it can be impossible to look past it and come to terms with the fact that your life has just changed forever.
It is this phenomenon — this inability to see beyond everything you need to do just to get through today — that makes it so hard to look at the big picture of living with diabetes. But as you move out of the newly diagnosed phase, you slowly begin to see things in a new light. As your years as a T1D pile-up, you’ll be amazed at how your outlook and perception of the condition will change.
If you are lucky enough to have a strong community of other T1Ds around you, you may even have the opportunity to learn some of these “truths” about the condition long before you have become a veteran diabetic yourself.
For everyone who isn’t so lucky, here are the top 10 diabetes lessons that seasoned diabetics wish they had known in the beginning.
1. You’ll Have to Educate Everyone You Meet
Even if you have only been living with diabetes for a short time, odds are you’ve started to pick up on the fact that few people really understand what T1D is. We live in a world dominated by type 2 diabetes, a condition surrounded by misunderstanding in its own right. As a type 1, you will constantly have people confusing your condition with one that shares the same name but is altogether different.
It’s best to be prepared for this eventuality now so you aren’t caught off-guard when someone asks if you should really be eating that or tells you exercise and cinnamon can cure you. Try to remember that there was probably a time when you shared a similar misunderstanding.
While educating people is always the optimal course of action, it isn’t always possible or worth your energy. Try not to let these people get under your skin and hold tight to the fact that you know this disease better than 99% of people out there.
2. It Could Be Worse
It’s easy to get caught up in your own pity party during those first few months (or years) as a person living with T1D. In some aspects, it’s your right. Your life has just changed forever, you should be allowed to mourn it. But it is always good to keep a level view of things.
Diabetes is not fun, but there are a lot of conditions out there that are a lot more debilitating, life-altering, and deadly. Not to mention that you have been diagnosed in a time when CGMs, pumps, and diabetes tech has made caring for this condition easier than ever. Consider that not too long ago diabetics had to hand sharpen the needle on their glass syringe while peeing in a cup so they could estimate their blood sugar.
3. The Only Constant Is Change
When I was first diagnosed, I remember thinking how nice things would be when I was finally done honeymooning and my blood sugars would level out. Turns out this isn’t a thing. Your insulin needs, your reactions to certain foods, and how exercise affects you will continuously change throughout your life.
Even if you dedicate yourself to eating the same meals, doing the same activities, and being on the exact same schedule every day, you will still find that at times your blood sugar is unpredictable. This is just one fact about T1D that no one can run from. It’s best to expect this now and work on your techniques for moving with the flow and adjusting your ratios and basal rates on the fly.
4. Perfect Isn’t An Option
There will be a lot of people in your life (you, possibly being one of them) who will expect you to have perfect control over this condition. There are about 20 million T1Ds out there who will tell you that this is impossible. And that one diabetic in your Facebook group who says they have achieved perfection is definitely lying.
If you reach for perfection you only stand to be disappointed in yourself. Instead, create healthy goals and strive to improve those areas that you struggle in the most. If you have a doctor or a parent that expects perfection, take the time to explain to them what you are hoping to achieve (a better A1C, more time in range, etc.) but that their expectations are too lofty and only serve to make things less perfect for you in the long run.
5. You’ll Do Better If You Can See the Silver Lining
Everything about being diabetic can seem negative if that’s the only way you look at it. For me, I know that living with this condition has forced me to focus on my health and become more aware of what my body is telling me. These are lessons most people don’t learn until they are much older and already suffering the effects of a life lived without this mindfulness.
Consider this the silver lining of your diagnosis.
It may be hard to see now, but as you live with this condition the benefits of increasing your mindfulness will start to become obvious. Focus on them and keep them at the front of your mind. Especially when the other aspects of the condition are making it impossible to stay positive.
6. Quitting Only Makes It Harder
There will come a time in your diabetic life when you will burnout. It is inevitable with a condition that takes this much continuous energy to manage. For those of us who have already been there and already played that game, let me tell you, quitting does not make things easier.
As hard as the daily grind of T1D is, recovering from a few weeks or years of not taking care of yourself is infinitely harder. And on top of that, you could be suffering the effects of that choice in the form of complications for the rest of your life. When you feel like giving up, know that the simplicity that comes with not managing your condition is painfully short-lived and the consequences will only make everything more difficult in the future.
7. Community Can Make a Huge Difference
Whether you feel like giving up or are on top of your diabetes game, having a supportive group of other diabetics around you is one of the best things you can do for yourself. There are few people in this world who will understand what you are going through, but all those who do are living with T1D themselves.
Reach out to other diabetics through organizations like Diabetes Sisters, T1D camps, and local meetups. Utilize Facebook groups and informative forums like this one here at Insulin Nation to stay connected to others who understand your struggles and can share advice. Just knowing that others have been where you are can make a world of difference.
8. Keep Learning to Keep Fighting
No matter how long you have lived with this condition, there is always something new to learn. Even some of the information you received during those first few confusing months as a diabetic you’ll come to find out was wrong or has since been replaced by better information.
Continue reading and talking to other people living with T1D. You will come across a lot of things that may not apply to you as well as plenty of fad diets and misinformation that you need to learn to ignore. But there will also be plenty of useful information coming out of new studies as well as announcements on new technology that could improve your management. Don’t rely on your doctor to bring all of this to your attention, take the time to seek it out on your own.
9. Find Balance to Truly Thrive
Everything about diabetes involves balance. You balance your carb intake with your bolus amount. You balance your basal dose with the hormones that increase your blood sugar. And this same balance applies to how you should live your life.
Some diabetics spend the first few decades of their lives so focused on managing their diabetes that they forget to live until it’s too late to do so. Others go wild as a teen and then are so bogged down by complications as an adult that they can barely function. Finding a balance between these two extremes is the only way to truly live with diabetes for the long run.
Take care of yourself, but don’t skip out on opportunities just because they might negatively impact blood sugars for a brief period.
10. You’re Strongest When You Feel Weakest
No matter how well you take care of yourself or how many of the truths on this list you commit to live by, there will still be times when you feel like you can’t go on. It is in these moments that you are truly the strongest.
Every day you get out of bed and do more to keep yourself alive than any non-diabetic could ever understand. That takes strength. But pulling yourself up when you are at your absolute lowest? There is nothing in this world that demonstrates your power quite like this. When the storm has passed and you are back on your own two feet, don’t focus on how broken or hopeless you felt. Focus on how strong you were to turn it all around.
And know that as you move forward on your diabetic journey, you will suffer through more periods of weakness. But also know that you have shown the strength to move past these moments before and there is no reason you can’t find your way through again.