Never a CWD
(CWD = Child with diabetes)
I was 22, graduated from college and married when I was diagnosed with diabetes. I say Type 1 a lot, but find that people don’t always understand so I say “juvenile diabetes” occasionally. But that’s not really true in my case. I’m an adult with type 1 diabetes. I’m a “typical type 1” medically, so I went from 60 to 0 in the pancreas department very quickly. During more extensive testing two months after I was diagnosed, we found out I make zero insulin. Which I suppose makes things easier and I don’t have to ever worry about the honeymoon period ending, because diabetes and I skipped our honeymoon.
In some ways, the late autoimmune response that massacred my insulin-producing cells was a blessing. I’ve been reading the diagnosis stories and the ongoing stories of people who grew up with diabetes and I can’t even imagine it.
My parents never had to function as an external organ for me. They didn’t have to agonize over giving me injections or getting our insurance to cover insulin. I didn’t have to deal with other kids thinking I was sick. I didn’t have to be on a first-name basis with the school nurse. I could compete in swimming without testing pool side or worry about keeping snacks in my extemp bin for high school speech. In college, I could eat in the dining hall without a second thought, I never had to take a test while low, or high. I got to celebrate my 21st birthday with a berry mojito and no insulin. I enjoyed our wedding cake with no worries of out of control blood sugar. For more than 2 decades, I was blissfully unaware and unaffected by type 1 diabetes.
I dare say that I had a “normal” childhood, adolescence and college experience. At least health wise.
I’m thankful that I started out with a complete understanding (or as complete as the hospital bothered to give me at the time) of my condition and I made the decisions about my own care. I’m 100% responsible for my own care and no one else has to feel burdened by my lack of a pancreas. I’m also thankful that by being diagnosed later in my life, I skipped the potential teenage diabetes rebellion that I read about, I skipped the possible college catastrophes.
Because my family was never responsible for my care though, they don’t entirely understand my needs, medical devices, limitations* or warning signs. My husband knows how to test my blood sugar, how to change my pod, how to give me an insulin injection, what everything on my Dexcom means, exactly how much juice/candy/glucose tablets for treating a low, etc. But when I’m out and about without him, I’m my own safety net. Many other adults with diabetes have fully trained and knowledgeable parents, aunts/uncles and siblings, I don’t but that doesn’t mean they don’t care.
When I was getting ready to leave my mom’s house last weekend, I was surprised when she asked, “Do you want to test before you leave? You look a little low.” Sure enough, when I tested I was 62, but my Dexcom thought I was fine. I thought I was fine! I didn’t feel any symptoms. It might just be a mom thing, she’s pretty good at spotting out of the ordinary things with me. It could also be that I had two instances of low blood sugar already that day and she was on the lookout for me. Regardless, she caught it before I did.
I know I’m not the only person to be diagnosed with a typical “childhood illness” as an adult (Jess put together a whole list of us!) but I still feel in the minority.
*By “limitations” I mean things like not being able to eat pizza from the place with the best coupon because their ‘secret ingredient’ is sugar, needing to wait before eating because I’m high or needing to wait before doing anything after treating a low.