Type 1 diabetes occupies a weird liminal space between visible and invisible disabilities. If you know what to look for, you can see the insulin pump that’s connected to me at all times. And if you were to touch where my site or sensor are, you’d feel something there. But if you didn’t notice either of those, and I didn’t tell you about it, you’d never know I was any different.
An ex of mine, when we started living together, got to see the process I go through every few days to change my site and sensor. “Wow, that really sucks,” she said. And it surprised me that it felt really good to hear. It feels like you aren’t “supposed” to let people pity you, but I didn’t feel pitied: I felt seen.
Most of the time, I handle diabetes – like we everyone handles their routine, daily struggles – alone and in silence. Most of the people in my life don’t know how much attention I pay to diabetes, how scary it can be, or how exasperatingly unknowable it is. They haven’t experienced the fear of not being able to afford supplies, or the frustration at spending more than $10,000 per year on them even when you can. They haven’t woken up at 3am four nights in a row with an urgent low blood sugar, or been confused as to why their blood sugar is high for a full 24 hours out of the blue.
To be clear, it’s often a lot easier to handle than that. There are many good, normal days. But I can never stop paying attention. And when life gets complicated for other reasons, diabetes is just another plate on the pile with dire consequences for ignoring it.
I wouldn’t want people to say it all the time, and I don’t want this condition to be the only thing people talk about with me, but sometimes, it feels nice to hear from someone with a normal pancreas that diabetes looks really hard to manage.
Peter Davoust 