A Community of T1D Veterans

This Veterans Day I would like to highlight something a little different on Sugarcoated – the concept of diabetes veterans.

I was diagnosed late in life at 22 (well for Type 1s, that is). I had missed out on growing up with the disease, among the support of family, friends, and fellow juvenile diabetics. Yes, I say “missed” because ever since I was diagnosed, I’ve felt largely excluded from the Type 1 community. Maybe it’s why I’ve never involved myself with organizations like the Juvenile Diabetes Research Foundation (JDRF) until now.

Because you see, I had a different experience than most Type 1s I meet. They were diagnosed at six or 13 and remember attending diabetes camp and having their moms pack them juice boxes for even the shortest trips. I’m not saying their diagnosis wasn’t daunting or depressing because after all, it’s still an incurable chronic disease. But in growing up with it, they developed a stronger support system. Through camps and fundraising events, they met other diabetics like them. They became friends; they shared stories; they didn’t feel alone.

So by the time they turn 22, they have a whole network of diabetes associates, whether diagnosed with the condition or related to it. Even when I volunteered at the recent JDRF gala in DC, most of the diabetics I talked to had been involved with events like these for years. They knew the drill. They could swap stories. Their parents were highly involved in committees and volunteer opportunities.

And then there’s me. I wasn’t diagnosed at six or 13. My parents didn’t raise me with the disease. Most of my longtime friends didn’t know me with the disease. It has become a central part of my life, but it hasn’t always been me. And I can count on one hand how many people I actually know with Type 1.

When I was first diagnosed, I tried going to support groups and meetings to meet others like me. I found they just depressed me. Most laughed about their diabetes insecurities. Most had years of stories to tell, years of experience managing it, and years comparing age old technologies with new. I only had a few months. I still remembered life without it, and I missed it.

Over time, I’ve learned of other adults like me, diagnosed in their 20s or 30s with no family history and no idea where it came from. In a sense, my family got off easy – they didn’t have to pay for my medical expenses; they didn’t have to worry about my blood sugar dropping in the night; they didn’t have to pack insulin and extra supplies for family vacations; they didn’t have to worry about whether my brothers would be diagnosed.

But who am I kidding? They still have a daughter with Type 1 diabetes. Even if I lived in a city two hours north of them when I was diagnosed, I can’t imagine how difficult it must have been for them to be so far away. Sure, they trusted me, but they couldn’t be there for me. They couldn’t monitor my blood sugar; they couldn’t help me learn how to inject myself with insulin before every meal; they couldn’t warn me not to drink too much for fear of forgetting about my diabetes. No, they could only call with their love and support and hope for the best. I can’t imagine how difficult that must have been.

And over time, I’ve learned to deal with it in my own way. I may not have had the typical Type 1 diagnosis story. I may not have attended diabetes camps. I may not have a social network of Type 1s. But I know I am not the only one. And even though I may feel excluded from that community from time to time, when I’m walking down the street and see an insulin pump hanging off someone’s waistband, I smile, if only for a second.

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One thought on “A Community of T1D Veterans

  1. Pingback: The Neverending Ride: Six Years With Type 1 Diabetes | Sugarcoated

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