Twelve years ago today, I was diagnosed with Type 1 diabetes. For me, as someone who was (and still is) afraid of needles and blood, it was my worst nightmare. But since then I’ve learned a lot and have grown in ways I couldn’t have imagined. And today I’m going to share with you the 12 biggest lessons I’ve learned since I was diagnosed.
1. Always bring your own drinks.
One of the worst feelings is going to a party and there not being any diet soda. Not that drinking water is the end of the world, but there is something to be said when the host has bought 7 different types of soda for the guests, but not one is diet. So I’ve learned to just bring my own whenever I go somewhere.
2. Diabetes tech is always changing.
When I was diagnosed, having a pump that could calculate your meal bolused was a big deal (RIP Deltec Cosmo, you will never be forgotten), and CGMs were only in their infancy. Now we are in a world with closed-loop systems and apps for sharing sensors data. Who knows where we will be in another 10 years.
3. Your diabetes may vary.
Just because you and I may both have Type 1, doesn’t mean our treatment will be the same. For example, you may need far less insulin to maintain your target blood sugars, while I may need a lot more. Or Chinese food may make your blood sugars skyrocket, but barely affect me. Diabetes is a unique experience for every person who has it,
4. You aren’t your numbers.
For the longest time, I was told that if I had a bad day with high blood sugars, it meant I was a bad diabetic and that I was doing something wrong. That mindset really messed with my mind and caused a lot of mental health issues. I’ve since learned that sometimes I will have a bad day, and sometimes I will make mistakes with my care, but that it doesn’t mean I’m a bad person or that I’m a bad diabetic. My numbers are not a reflection of who I am, and your numbers aren’t a reflection of who you are.
5. Complications are always on the table.
Despite what you may have been told, complications from diabetes aren’t directly linked to how close to target your numbers are. You could have perfect numbers your whole life and still need a kidney transplant, or you could have high blood sugars all the time and have no problems. There is no formula out there that will tell you if you’ll get complications or which ones you will get. If there were, I think diabetes would be less stressful.
6. Anything and everything affects diabetes.
You could eat the same thing at the same time in the same conditions for two days in a row and get wildly different blood sugars. The strangest things can affect how our body reacts and will change the way our numbers are. I’ve learned to never take anything for granted when my blood sugars are good, because all it will take is the wind blowing the right way and everything will change.
7. Doctors aren’t always right.
As much as we want to trust our Endocrinologists one hundred percent when it comes to our diabetes care, they aren’t the ones who are living with it. And even the Endos that have Type 1 have different reactions than we do (see number 3). Now I’m not saying that we need to ignore our doctors or that we automatically know more than them because we have diabetes and they might not, but if something doesn’t sound right or feel right in your care, you should speak up, because your doctor isn’t always going to get it all the way right all the time.
8. “Sugar-Free” doesn’t mean “Diabetes-friendly”.
I don’t know about any of you, but if I had a nickel for every time someone gave me Sugar-Free candy or cookies in place of regular in an attempt to be thoughtful, I’d have enough money to for all my supplies out of pocket. A lot of people just aren’t aware that in addition to having sugar alcohols, which can mess with your digestive system and cause severe stomach pains, often times, the products labeled “Sugar-Free” usually have more carbs than regular versions of the same product. And the regular versions definitely taste better, too.
9. Spontaneity still requires forethought.
Gone are the days when I could just walk out the door and head to a friend’s house without so much of a thought as to when I needed to be home. Now I have to at minimum bring my meter and strips, but more often than not I end up bringing a bag filled with low snacks and extra pump supplies in addition to my testing kit. Just a small night out requires me to think about all the potential things that could go wrong with my diabetes, and make sure I’m prepared for them.
10. Ignorance about diabetes is a pandemic.
“Yes, I can eat that.” “No, it’s not ‘the bad kind’.” “No, I won’t grow out of it.” The mere fact that we have to say these things on a regular basis shows that there is way too much misinformation out there about diabetes. Our job is to be educators, and set the record straight to try to prevent those memes about diabetes from spreading. You know the ones; “Bob has 30 candy bars and eats 20, what does Bob have left? Diabetes.” Even if we manage to educate one person, we can potentially save lives and stop the spread of misinformation.
11. Advocacy is important.
As unfortunate as it is to say, it isn’t considered “cool” by society to advocate for diabetes (that attitude is changing, but we still have a ways to go). The NFL doesn’t wear blue during the month of November to bring awareness, and there aren’t t-shirts out there that say “Save the Pancreas”. It just shows that we need to keep pushing to raise awareness.
12. You are not alone.
Sometimes it may feel like you are the only person who knows what it feels like to have diabetes, but that is not the case at all. The Diabetes Online Community is always available to talk to when you have a question or need to vent your frustrations. I’ve met some lifelong friends because of the online community. Social Media platforms like Beyond Type 1 and forums like Children with Diabetes are great places to start if you want to meet people who are going through the same things as you are.
Overall, I know that while I still have learned a lot over the last 12 years, I still have a lot more to learn. We are discovering more about diabetes every day, and who knows where we will be in another 12 years?
What about you guys? What have you learned so far? Let me know in the comments section below!