I recently swanned past 24 years of living with type 1 diabetes. It passed without fanfare or drama, and I am thankful that I currently don’t have any complications of living with type 1 diabetes. I also spent the week feeling grateful. Not because I have diabetes, but I am glad I have amazing tools and support that I never thought were possible when I was diagnosed. For example, an open source automated insulin delivery system – OpenAPS – which I now have used for over half my time (!) of living with diabetes. Mind boggling, both the technology and the length of time and the fact that I am still using OpenAPS. When I was diagnosed, a CGM was a pipe dream and I had syringes – not even “pens” – to deliver insulin. (Fun fact: I’ve never ever used a pen!)

Plus my husband, Scott, and I have figured out how to divide and conquer some of the admin tasks of diabetes management to relieve some of the burden. I don’t mind reordering supplies online, so I do, but I despise unpacking the box when it arrives, so he does that for me. Sometimes I can’t bear to make another phone call and argue with or sort out an insurance company mishap one more time, so he takes a turn with that.

Coincidentally, in the past few months I have been thinking about the (mostly) invisibility of my type 1 diabetes. I used to feel like that’s a lot of what people, including family members, saw about me. When some of my 10 nieces and nephews were young, they’d notice and touch and ask about my pump and then my OpenAPS rig, or sometimes my CGM. (I wrote my first book about that, in fact.) Nowadays – possibly because they are older – it rarely comes up. It mostly only comes up when they sometimes see me eating candy and I explain that I’m fixing my blood sugar, and that’s it. I don’t even know if they remember or think about the fact that I have type 1 diabetes – and I’m so glad that they don’t. It’s one thankfully small part of my existence these days. This is why I’ve always personally disliked someone directly calling me “a diabetic” and don’t personally use that term to describe me. I have diabetes. It’s not my identity. (Other people are free to call themselves what they prefer!)

I was thinking about that invisibility juxtaposed to what my nieces and nephews do see and what stands out to them. Funny enough, it’s my celiac that stands out the most nowadays. They know Aunt Dana has to eat gluten free and that means she often gets her food first – even before the kids! Gasp! – at family meals. Sometimes she eats the same things but a lot of the times she eats something different.

A few weeks ago I was joyfully talking about the ham and cheese croissant I got from my favorite gf bakery in DC and how I got a few extra and had brought one with me that day. One of my older nephews looked at me thoughtfully and said “wow. When we want a ham and cheese croissant…we just go to Costco and get one.”

He asked me if I minded being gluten free and I said yes but I couldn’t do anything about it so I just extra appreciate when I do find special treats and also, how cool it is that his mom (my SIL) stocks her house with gf food and makes meals safe from cross contamination for me. (Their house is a safe haven in this regard and it’s SO AWESOME to have so many family members on both sides of my family that do this! They also NEVER make me feel like a burden for the extra mental and physical labor or expense that they take on, and these are all such precious labors of love. This is part of why I have been feeling so grateful lately.)

He then asked something along the lines of “do you ever think about it not being fair?”. I was thinking through how I might respond when my SIL jumped into the conversation and said something along the lines of it probably doesn’t do Aunt Dana any good to think about whether it’s fair. I was snickering and said “yeah, I’d never get anything done!”

I can’t remember if this was before or after he had looked at the pills I had set out to take with my food – my pancreatic enzyme replacement therapy because I have exocrine pancreatic insufficiency and have to take enzymes to digest my food – but I was thinking through the collective diabetes + celiac + EPI experience of what I have to do to eat and successfully digest and use the food I eat. I’ve figured out routines and methods of doing this, but it’s actually a lot – wearing a pump and a CGM and OpenAPS to manage insulin and glucose; finding and making safe gluten free food; and remembering to take and dose the right amount of enzymes. Every. Time. I. Eat. It’s a lot! I do it every day, multiple times a day, and I don’t get any breaks from it.

And so oddly enough, this mini conversation with him really helped me feel seen, because I both appreciate and dislike how invisible all the work I have to do to manage my body is.

This is one of the dualities of living with a (or in my case, all of these) chronic disease(s). It’s a lot of work. Sometimes we carry the work well and it’s invisible from the outside. But it doesn’t mean it’s still not a lot of work. As much as I mentioned the lack of fanfare and drama of a type 1 diabetes anniversary passing this year, that doesn’t mean I didn’t have to change my CGM and pump sites, keep an eye on things, take extra carbs some of the times I went out to exercise (and always carry carbs in my pocket which means shopping for and always wearing shorts with pockets), and dozens of other micro decisions I probably intuitively make throughout the week to best optimize my quality of life for living with diabetes. It’s a lot, even though I have tons of resources and have built all kinds of strategies around managing it. When all is well, it feels like less of a burden: it’s just what I have to do. But sometimes I find myself feeling overwhelmed by it, even after all this time.

Sometimes it’s because of one of my other chronic diseases that’s requiring extra work (such as pre-investigating and researching and planning GF food options for a trip), and so one of my strategies is recognizing that I am feeling overwhelmed, probably for a good reason, and this is making my resilience feel lower across all of these chronic diseases I’m juggling. It’s a sign to give myself grace and more flexibility to not optimize everything as hard as I otherwise would just then.

(Maybe I choose something more simple to eat when I feel overwhelmed about cooking or prepping a more balanced meal for dinner. Maybe I give myself 12 more hours before I change my pump site. Maybe I recognize that something else is bothering me AND it’s not something I have to figure out just then, and I can plan to fix it later when my resilience increases again.)

The key is trying to interrupt the mental loop where I start to beat myself up – I’ve had diabetes for 24 years, why is this so hard?! – and remind myself it is feeling extra hard because something else has changed. Even if it’s outside diabetes, it can still influence diabetes either by influencing my glucose levels or influencing my resilience and energy and bandwidth to do the “routine” or “easy” diabetes tasks.

Because those are still work, and I’ve been doing it for 24+ years. That’s a long time!