Origin Story: Type 1 Diabetes
I was whisked off to Hershey Medical Center for further testing, which is a little over an hour from my house. Back in the late 90s (and I think still today) there weren’t any pediatric endocrinologists in my area. It’s funny looking back how my family and I didn’t realize how many times we would be making that drive for quarterly check ups, blood work, and sessions with the dietitians & diabetes educators for years to come.
Once I was admitted, I was given permission to go HOG WILD in the hospital cafeteria (Hello Soft Serve Machine & Whoopie Pies) to see how my blood sugar would react. I was a literal kid in a candy shop, eating with reckless abandon. In retrospect, it is nice I could do that instead of drinking some gross glucose drink like women do when they’re pregnant to screen for Gestational Diabetes. (The ONE perk of a high risk T1D pregnancy was not drinking that SHIT). It was the last time I’d ever eat without diabetes lingering over the meal like a GIANT Debbie Downer.
Then, the results were in. My blood sugar came back two hours later at 376 mg/dl... Definitely diabetes. I remember being told I was lucky it was caught so early, as the boy in the hospital room next to me was deathly ill with severely elevated glucose levels and DKA. It was definitely divine intervention on some level. I have heard horror stories of what happened when people were diagnosed. I got to eat some sweets and hang out in the cool playroom of the Children’s Hospital.
While in the hospital, I learned how to administer shots on my own, practicing on an orange. Maybe that’s why I have no desire to eat oranges anymore? I just picture wiping it down with an alcohol swab and stabbing it. It’s a good thing oranges can’t feel anything, or it wouldn’t have been very happy with me. I was meticulous. Methodical. Nurses were telling my parents how amazed they were with how I took everything into stride. But what other choice did I have? In hindsight, that is A LOT for any kid to take in…
“Hello?! Hi? Yes you. Little girl. Your life is forever changed now. Sleepovers will require constant management of insulin shots. You will become OBSESSED with food. Too much. Too little. People will ask you if you SHOULD be eating something. ALL. THE. TIME. You’ll start to binge in the middle of the night, eating the foods people deem OFF LIMITS for a diabetic.”
Guilt. Shame. My relationship with food was never the same.
I don’t blame anyone for this though. Everyone was just doing the best they could at the time. My team at Hershey Medical Center was AMAZING. Maybe they were even aware of the link between disordered eating and diabetes, I just don’t remember it being discussed. Memories are funny like that. I also think the stigma and misinformation around diabetes led a lot of people to make comments without realizing the impact of their words. Unfortunately, those comments still happen today.
Even with all the amazing advances in diabetes technology in the last 20+ years, diabetes is still a total head game. I’m pretty sure I would have been an anxious person either way, but diabetes amplifies it. Every treatment decision I make comes loaded with the years of experiences and struggles. When I decide what to eat for lunch today, it’s a multilayered question. What looks good? How many carbs? How will it make me feel? It can really warp your relationship with food. Add on top of that disordered eating thoughts, and hot damn, every time I eat is psychological warfare. Sometimes it can be so exhausting making all these decisions, I don’t want to eat at all.
So what would I tell myself if I could go back to my diagnosis date?
The numbers are just tools, data, to help you along the way. They don't define you. They aren't who you are at your core. A high blood sugar doesn’t make you a BAD person. Needing to sit down when you’re blood sugar is dropping doesn’t make you WEAK. Don’t punish yourself after a low blood sugar binge by restricting the next day. You are MORE than your diabetes.
Food isn’t the enemy either. It can feel that way sometimes. If you eat too much you feel awful. Not enough, you feel dizzy & weak, and risk passing out. The stakes are high with diabetes, and it can make food scary. Ominous. But food is more than what it does to your blood sugars. There has to be a balance between managing your diabetes and living life. Food is meant to be enjoyed. Shared. Celebrated. Not demonized.
That’s why I started this blog. Helping others really keeps me going on those darker days. I am a Registered Dietitian, working in Mental Health, and it makes my day when I can help someone begin to heal their relationship with food and their body. Instead of fighting against it like I did for so long. If you’re struggling, please don’t hesitate to reach out. I’m here to listen. Vent. Cry with you. Whatever you need. Feel those mother-fucking feelings.
Love, Jess.
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