I was diagnosed with Type 1 Diabetes in February 1990 at the age of 8. I had no idea what was happening, no clue that my life would completely change, that life, as I knew it, had ended. There was now a reason for my drastic weight loss (I had become a skeleton), the bedwetting, the constant bathroom trips at school, but what else did this mean?
I remember seeing my dad cry as the doctors spoke to my parents and I laughed. I had never seen him cry before. Why was he crying? What was happening? I actually wasn’t scared at all. I walked into the hospital just fine; no paramedics, no coma (as is likely with diabetic ketoacidosis when first diagnosed). I was one of the lucky ones. The hospital stay was the best! I had all this attention and all the “sugar-free” and “diet” snacks I could want. I even had my own shelf in the fridge on my hospital floor (back then a T1D diagnosis warranted a two week stay in the hospital). I wasn’t allowed these treats at home so I was happy staying there as long as they would keep me!
But this high (pun intended) didn’t last. When I was released and sent home where my mother had to give me multiple injections and finger pricks a day, where I had to weigh and measure my food before I ate anything, even something as simple as grabbing a banana meant another finger prick and insulin injection. It sucked! That’s when I realized I was different, I thought “I’m a freak now!”. My brother didn’t have to do any of this crap. None of my cousins or friends had Diabetes. In fact, we had never even heard of this disease before. We didn’t know anyone who had it. I was the only one. I was different. I hadn’t met another person going through what I was going through. Sure, I met other kids in the hospital but I didn’t know them in my real life. Once I left the hospital I had no way of contacting them again. No email, no cellphones, no Facebook or Instagram. I felt like there wasn’t another person on this earth who understood that I felt scared, embarrassed, and alone.
Social media wasn’t a thing. I couldn’t add “type1diabetes” in the Instagram search function and find other kids like me. I was alone, there was no one else. I had nowhere to turn to ask all the questions that I had. I did have my doctor I guess, but he was an old man. What did he know about what I was going through? My mind kept racing; would I live a long life? Would I be able to have kids (yes, this was a worry at 8 years old lol)? Would I still be able to dance, swim, and do gymnastics and karate? All the things I loved, would I have to give them up? Would my life now consist of only multiple daily insulin injections and finger pricks, making sure I don’t play too much and go low or not move enough and go high, waking up throughout the night to check my blood sugar to ensure I end up waking up every morning? What did all of this mean for my life? Would this be it forever? I so badly wanted one person, anyone who could tell me what my life would look like as I grew up.
Going back to school after my diagnosis was unbelievably difficult. I had to go back to school and I would be different. I wouldn’t be able to eat candy and cookies at recess. I couldn’t enjoy donuts and juice boxes during pizza lunch. What if my friends avoided me? The first thing I remember saying that the first day back was “don’t worry, you can’t catch Diabetes”! Imagine that panic, worry, humiliation as an 8-year-old.
Thankfully, the kids didn’t treat me differently. I didn’t have a hard time socially because of my diabetes but I still avoided talking about it. I did my best to hide what I was going through. It wasn’t until many years later, that I found my voice and accepted that even though I had diabetes, I also had a life that I wanted to live fully. A life filled with love, fun, and health with the support of some amazing people. People who did not know firsthand what diabetes is like, but who researched and learned all they could, and helped me become a stronger more confident person.
This is why I’m now such a big advocate for awareness and community. These two things are just as important, especially to a child, as taking care of your Diabetes and making sure you have good control. Knowing that you are not alone, that you are “normal,” means the difference between taking your diagnosis seriously, taking care of yourself to be healthy, vibrant, and happy, or feeling scared and alone and letting go of your diabetes management because you hope if you avoid it, it will go away.
To anyone recently diagnosed, please know that Diabetes doesn’t define you and it definitely doesn’t restrict you in any way. As long as you respect yourself enough to take your diagnosis seriously and have good control over your blood sugar levels, your life can be whatever you want it to be. Your diabetes won’t hold you back, only fear and your own self-doubt can do that. Find your community; search all the resources that are available to find others who are dealing with it too. Ask all the questions and share all of your concerns, use this community to get through and be stronger. I promise you, it gets easier and you’ll get the hang of it, just don’t try to do it all alone!
A T1D mom, wife and boss, navigating life with a pump, CGM and 3 kids in tow