Anything that can go wrong, will go wrong. This could be a mantra of those living with T1D and their caregivers. You have to learn to “expect the unexpected” when T1D enters your life. Have to get to an important meeting? Too bad, low blood sugar strikes! Sending your T1 kid to their first sleepover? You can bet that will be the time Dex stops working. Had perfect blood sugars yesterday? Eat the same things today and… well, you get the point.
T1D will always bring unexpected challenges with it. Being a pancreas is a tough job. But unlike other jobs, you can’t just walk away from this one.
I could take this opportunity to give you a list of products to carry around with you. But, even if you keep these things with you at all times, they won’t change the unexpected nature of T1D.
Type 1 diabetes has a personality of its own. It’s like having a super clingy, annoying roommate. As much as people want to tell you that you can “control” T1D, you can’t. But one thing you can control is how you respond to it.
The 5 things that will help you deal with T1D’s unexpected challenges
It’s common for people with a new diagnosis of T1D to go through the stages of grief. You may get angry about the new challenges life with T1D presents. You may become depressed at the realization that this is the rest of your life.
These emotions don’t happen in a specific order or on a specific timeline. They can come and go many times throughout your life. You may even go through multiple stages in one day.
Being sad and angry that you can’t go back to life before diabetes is understandable. But wishing it would go away isn’t going to make it so. If you’re fighting the fact that this is happening, it will be harder to deal with complications and unexpected issues as they arise.
It can be very hard to acknowledge that this is your “new normal”. Acceptance is a hard thing to master and you may find anger and depression poking in here and there throughout the years.
If you’re having trouble with accepting that your life plan has been altered by T1D, I highly suggest reading the book Option B: Facing Adversity, Building Resilience, and Finding Joy (Get it in Canada here). It can help give you a new perspective on the changes that were forced upon you at diagnosis.
Attitude is everything. If you let T1D consume your life, it will consume you as well.
Yes, you have to be prepared. Bring your supplies with you, eat before exercising, adjust insulin dosages as needed. But don’t let it control your life.
There are scientists with T1D. There are professional athletes, famous singers, politicians. People with T1D compete in the Olympics and national beauty pageants.
If you have a dream, you can do it with T1D.
It can take more work and problem solving, but whatever you want to do, it’s possible.
When my son asked to go for a sleepover for the first time, I instantly started thinking about how we could make it work. I didn’t say “no” because he has T1D. I didn’t freak out because the other parents weren’t trained in T1 care. Or because “what if” his pump site rips out? Or because it’s easier to keep him home.
Don’t ignore the “what ifs”, but plan for them. Sure, it’s possible his site could rip out during a sleepover, but it’s unlikely. And if it did, the parents could call me to pick him up, just as they would if another kid had a problem.
Which brings us to number 3…
When my friend’s daughter was diagnosed with T1D, she was worried that she didn’t have the personality to care for such a complex disease.
“I’m not a type-A, organized, analytical person. How will I ever grasp this disease?”
The response surprised her,
“It might be better to NOT be a type-A kind of person. If you need structure, organization, and something predictable, that’s not T1D. Your ability to be flexible will be more beneficial than being organized ever would be.”
Because T1D will be unpredictable. No matter how organized you are, the unexpected will happen. If you’re able to be flexible, either by changing your plans or the way you complete a task, you will be better equipped to deal with any unexpected challenges T1D throws your way.
Having friends and family who care is amazing. They can try to empathize, but they will never truly understand what it takes to live with T1D. Nor would we want them to. The only way to understand this life is to live it, and we don’t want that for our loved ones.
In person meet ups are great! In my community, there are monthly meetings for adults with T1D, meetings (that I organize) for families with children who have T1D, and more official meetings for families held at the local hospital by a social worker who works with T1D families.
I highly suggest asking your endocrinologist if there are any similar groups in your area. It’s wonderful to meet other people who “get it”.
If there are no meetings like this in your area, don’t worry!
We live in a time of technology. There are hundreds of T1D Facebook groups that you can join. People who live with T1D all around the world are at your fingertips for advice, encouragement, and to lend an ear when you just need to vent.
Related page: T1D Facebook Groups
Related post: The Ultimate Guide to T1D Facebook Groups
And last, but not least…
Lots and lots of coffee.
Because well, when it comes to T1D, you may never sleep again.
To all of you living with T1D every day,
Happy Carb Counting!!
This post was inspired by the 8th annual Diabetes Blog Week Day 1 topic:
“Diabetes and the Unexpected: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?”
Hop on over to Bitter Sweet Diabetes for more posts about “Diabetes and the Unexpected”, and follow along all week for more!