Since I was a child, I have always known that something else was going on autoimmune-wise, concurrent with T1D. Randomly breaking out in hives, allergies, sensitivity to anything and everything depending on the day of the week, and so on, all muddled my experience. Type 1 diabetes, alone, is hard enough, yet we know there is often autoimmunity effect overlap in other areas.
I’ve moved mountains and scaled Everest over time to get more comfortable taking sufficient insulin- the hormone which sustains human life but can snuff it out quickly with one inadvertently “off” dose. I have learned how to sit with uncertainty, and that I can handle anything, including hypoglycemia. And yet, the physical results of this effort are often just not visible.
My greatest fear in diabetes has never been the complications, albeit undoubtedly a rough road to endure. Rather, most bothersome is the societal insinuation of “not trying hard enough,” of one day being the stereotypical diabetic friend / relative / etc. whose premature death / complications fate is erroneously rationalized away as lack of effort. Those ideas make it easier for the person assuming, because the emotions of the truth are that difficult to accept. I’d counter: Imagine living it day in and day out, for decades without one day off- not just the diabetes management aspects emotionally, physically, financially- but also having to sit with those harsh truths of knowing how most of the world sees us, and what our loved ones might hear in our wake one day.
I suppose this blog is partially to acknowledge it all, to save face a bit, to not have to explain one more time. I recently met with a doctor about some non-diabetes-related concerns. I begged for 30 seconds of her time so that I could explain: My blood sugar may not be high because of diabetes, alone; these symptoms may not be blood sugar-induced; rather, the other issues may be contributing to the insulin resistance! The words gushed forth, and to my surprise, the doctor nodded. “You’re probably onto something there. Let’s run these tests to investigate.”
Just like that- no judgment, taking my effort for what it’s always been- nonstop- despite the objective A1c results.
One far away day, if an acquaintance ever tries to put inaccurate words into my own diabetes story and I am not there to explain, I hope my family or friends can express exactly what needs to be learned: That diabetes (or other health conditions) are enormous work, and the individual always tries (even when from the outside it may not look like it, as there are so many psychosocial factors at play which cannot immediately be seen).
More importantly, I hope the recipient of the lesson sits with their own emotional discomfort, to be like my doctor- nodding, accepting that the difficulty must be painful for others, and being open to learning more.
We can’t change the ignorance surrounding diabetes overnight. But these small interactions move us closer to the legacy we deserve.
We have always tried.