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.
First, let me say that’s a beautiful wedding picture!
Those of us who were diagnosed as children (I was Dx’ed at 7 and I’m 38 now) don’t necessarily have swarms of others who can take care of us, either. Sure, my parents could probably draw up Regular and NPH insulin and mix it in a syringe, but that doesn’t do much good these days. They could probably administer a glucagon shot if they needed to (and could find it). My wife knows all about my highs and lows (BG-wise) and knows what a good range is, but has no idea how to do anything with the pump, infusion sets, or CGM, and probably doesn’t know if 30 units of insulin is enough for a meal, an entire day, or a month.
When I read that paragraph about all the stuff your husband can do for you (and he sounds wonderful, by the way) it really made me pause and think. I’m always out there as my own safety net. Yes, others can spot the signs and anyone can fetch some juice, but if for some reason I couldn’t completely care for myself, I don’t know anybody else who could. But you make a great point, just because others don’t administer care, doesn’t mean that they don’t care. I know they do.
I always feel like you have something valuable to add Scott. Thanks for the compliment! It’s amazing to realize that it was pretty soon following that picture I started showing symptoms.
One of the things about being married at diagnosis is that my husband went through it with me. He talked to all the doctors when I was in the hospital, asked questions and got the instructions/information that the parent of a child being diagnosed with diabetes would get. I’m blessed to be married to someone so involved and knowledgeable.
I actually find this interesting as a spouse of a diabetic. I don’t know how to give him shots (he won’t show me) but I help calculate the insulin he takes, count the carbs, check his Dexcom, remind him that he needs to eat before he gets low… I kept wondering if all spouses went thr ough that with their significant other. He was diagnosed about 15 years ago (he was 19) but just recently had a lot of changes to his care. It’s exhausting and sometimes overwhelming/lonely feeling just doing that and I’m not even diabetic.
I totally share your pain with this. I feel like an outsider a good chunk of the time listening to people talk about how they’ve had diabetes for 20-something years. I’m all like, “yea… 6 years here…” Solidarity, sister.
I feel the same way. I was diagnosed just before my 30th birthday 2 years ago. People always say how hard it must be to have to change so much when you’re already set in a lifestyle (and it is). But I’m just grateful to have had 30 years of normal blood sugars without having to worry about carbs and insulin and highs and lows.
I was diagnosed 4 days before my 22 birthday. I tried to get into a clinical trial a few months ago and as a result of that testing I found out I have zero c-peptide as well. No insulin production here either.
I understand the whole “being diagnosed with juvenile diabetes as an adult” thing and a lot of people do not understand how the day before my 23 birthday I could have been diagnosed with an illness for “kids.” Long behold I have probably had the illness for 5+ years, and just didn’t have any crazed symptoms. My husband knows how to give my insulin, how to test my sugar, and he knows the warning signs. I can usually tell when my blood sugar gets down to about 90 because I’ll get cranky, light headed, confused, etc. NOT fun! Or when it is high (which is a rarity anymore) I get super nauseated! I have even taught my 4 year-old niece what my meter and glucose tabs look like and I occasionally test her by asking her to bring them to me. She knows what and where they are and she happily brings them to me! I fortunately have some insulin reserve still, but my doc said that can run out at any time and I will be on total insulin instead of insulin/pills.
I hear ya. I am going to hit 20 years this year, but I was dx one month before my 18th birthday. I can’t tell you how many times I’ve heard “isn’t that what kids get?” after telling them I have Juvenile Diabetes. I’m thankful that I was able to have a “normal” childhood … but at the end of the day, it doesn’t matter what age you get your dx.. we’re all going through the same thing, just at different stages in our lives. 🙂
a good reminder for everyone to have someone in their life on a day to day basis that knows the basics of T1, can recognize signs of lows/highs and will have the knowledge to help you in case you need it.
i was diagnosed at 15, so my hubby kind of learned about T1 as he was getting to know me. even so, since I’ve recently begun taking better care of myself, he has made a great effort to learn about my pods, understand where my sugars need to be, and helps remind me to check whenever odds are good i might go low. i keep glucose gel in my desk drawer at work and have given my coworkers instructions on where to find it if i pass out. hopefully they’ll never need it, but it’s there and they know!
a good post!
Amen sister. I thank the Lord everyday that I was diagnosed at 26 years. I read so many blogs of parents who have children with diabetes and it breaks my heart to see such young diagnosis ages and the trials and tribulations the parents AND children go through.
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