Top 10 Things I Wish My Parents Knew When I Was Diagnosed with Type 1 Diabetes

By Amelia Cooper, Adam Brown, and Tia Geri

Twitter summary: What I wish I could have told my parents after being diagnosed with type 1 #diabetes – life gets easier and I can still have fun!

Eighth grader Amelia Cooper and her father Blake recently stopped by the diaTribe office in San Francisco for her middle school career day. After publishing our learning curve last month on tips for patients newly diagnosed people with type 1 diabetes, we wondered what Amelia wished she had said to her parents, friends, and the general public back when she was recently diagnosed. We learned a great deal from her, and then teamed up with Tia Geri, who was diagnosed with diabetes in early 2009 and who helped Amelia and Adam refine the advice! Adam was diagnosed at the age of 12 – he remembered a lot as well! 

1. I’m going to feel and look a lot better. Even though the diagnosis of type 1 diabetes is scary, it will not hold me back. Watching what I eat and how much I exercise makes me healthier, and these are important life skills that everyone should have. Though diabetes comes with plenty of hassle, it also builds a lot of critical character traits – resilience, adaptability, responsibility, and so much more. For many people, it ends up being a blessing in disguise.

2. If I’m irritable, it may mean that I’m low (or high). When I am hypoglycemic, I don’t feel well, can’t think straight, and may have trouble expressing my thoughts. If I am not acting right, help me by giving me a source of glucose and then checking my blood sugar. It is important to check blood sugars frequently and regularly. Trying to control blood sugars without testing is like trying to fly an airplane without looking at your controls. If you are not regularly checking your altitude, it is likely that you will crash. (However, I am not always irritable just because of my blood sugars. Every kid has a reason to be mad sometimes.)

3. Pizza and ice cream are still okay. There is a time and place for everything in moderation. I have found that after having pizza, it is very difficult to control my blood sugars. However, if I have pizza for lunch instead of dinner, I have more time to make adjustments to my insulin levels or exercise to help offset the spike. Other patients find that they do best just avoiding pizza altogether. Remember that diabetes is a very individual disease, so let’s work as a team to find a diet that works for all of us – me, you, and my blood sugars!

4. I am not a number, so don’t judge me by one. Blood sugars should be used as guidance to make adjustments and bring me back in range – they do not define me as a person. There is no room for shame and blame when I am trying my best to manage diabetes. There are so many variables that go into managing blood sugars, and it’s impossible to control all of them. When a number is not in range, please don’t view it as a mistake, but as an opportunity to figure out what needs to be changed.

5. Sleepovers are fun and still okay. Having friends that understand what diabetes is and what I’m going through will help keep me healthy and happy. I am lucky to have a group of friends that have been with me every step of the way. I can be myself around them and never have to explain why I pick salad over fries. Loosening up and allowing me to have a sleepover away from home is a very scary thought, especially soon after diagnosis. But remember that things will be okay, and I will surprise you with my responsibility and diligence. A little bit of education goes a long way, and I will be just a phone call away.

6. Counting carbs gets easier. When I was first diagnosed, I didn’t know what a carbohydrate was, but over the first few months I quickly learned how to read packaging labels, look at a plate of food, and have a good idea of what I was eating. Practice makes perfect and making it a game makes it more fun.

7. Technology can make my life easier. At the time of diagnosis, I had to learn how to check my blood sugar before and after meals, count my carbs, and give myself shots. It was very confusing and time-consuming. I now wear an insulin pump and a CGM, which both make it a lot easier and more convenient to keep an eye on my blood sugar and make small adjustments to keep me in range. Don’t be afraid of technology – it can be one of your greatest allies as you work to manage diabetes.

8. I may beep. And no, that is not a cell phone. Often, my pump or CGM will beep when I am in public or at school. It is important to respond in an appropriate and timely manner to these alerts. Sometimes, there is a temptation for me to hide my pump or meter because you don’t want to be perceived as different. Stay true to yourself! It is helpful for teachers and other people that I’m around to understand what diabetes is and what devices I’m using. Educating them will avoid any irritation when I fall out of range and my CGM starts beeping.

9. Diabetes is not an excuse. Homework and household chores are never fun. Don’t let me off the hook because you feel sorry for me. You can let me play the D-Card occasionally, but not all the time.

10. I am still the same person. As Kerri Sparling says, “Diabetes doesn’t define me, but it helps explain me.” Remember that the future is getting brighter every day and I will live and long and happy and healthy life – all I need is a little help and encouragement along the way.

If you liked this article, we also recommend our learning curve on Top Ten Tips for People Newly Diagnosed with Type 1 Diabetes. 

Interested in learning more about the latest tips, products, and research in diabetes? Sign up here and receive free updates on future diaTribe articles.