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My Diabetes Story: a Tale of Two Types

0 2 years ago

My story is not unique.

I found out that I was diabetic at my annual checkup. Which, I felt fine, didn’t I? Sure, I was grumpy all the time, and I’d lost weight, and maybe I was drinking absurd amounts of water every day, but it was the middle of August. What did my doctor expect?

The denial lasted exactly until I saw my numbers.

My doctor put me on insulin right away, and at my request (my family tree is full of autoimmune disease) we ran some tests to rule out type 1 diabetes. One of the most famous (and easiest) tests for T1D looks for an antibody that attacks a protein called GAD-65, so that’s the one we settled on. When it came up negative, I shrugged my shoulders and began my new life as an insulin-dependent type 2 diabetic.

Neither my doctor nor I knew at the time that only about 75% of people with type 1 diabetes have elevated GAD-65 antibody levels. Neither of us tested for any of the other antibodies, because that would have required sending tests to a huge out-of-state lab, and that would be expensive.

I got used to the lectures from well-meaning relatives about how I shouldn’t need insulin as a type 2 diabetic. I learned which food substitutions worked and which weren’t worth it. I even got my A1C down to normal levels. I went down to only one dose of long-acting insulin daily.

And then I got cocky. I stopped checking my blood sugar regularly, because I was only type 2, I didn’t really need that much supervision as long as I ate well. Right?

Needless to say, my blood sugar did not agree with that view of things. And the annoying thing about facts is that they’re true regardless of your opinions or biases.

My old GP retired, and my new one took a look at my A1C and referred me to the specialist I’d been steadfastly refusing to visit (because I didn’t really need to go). This specialist prescribed me a continuous glucose monitor, and one follow-up visit later, she told me what I kind of already knew: it was time to get the more comprehensive tests for type 1.

Seeing my antibody counts was one of the greatest moments of relief I’ve ever experienced. There is so much messaging around type 2 diabetes saying that people should always be able to control it with lifestyle changes. There’s a huge culture of blame surrounding T2D, and I’d internalized it from the start. Knowing I was type 1 meant a release from six years of unwarranted guilt and shame.

The thing is, I don’t want anyone to feel that guilt. I want to help build a culture of positivity, strength, and solidarity among all diabetic people, regardless of type. I want to create a culture where nobody is shamed for their health. (And a culture where more doctors know about diabetes as a whole would also be nice, while we’re at it.)

That’s why I’m proud to introduce myself as AltHealth’s new Diabetes Channel Champion. Because my story is not unique, but maybe it should be.

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