my life with diabetes – Hugging the Cactus

There are few word pairs I loathe more than “controlled” and “diabetes”.

How the hell can diabetes be “controlled”? It’s not a video game to be played with a controller. There’s no character selection or “start” button. And it most definitely can’t be shut off with the flick of a switch.

On the contrary, it’s my opinion that diabetes is a bit of a wild beast that can’t simply be tamed. It doesn’t care if you follow the same routine every single day – it’ll act up for no damn reason whenever it pleases, much to the dismay of a person dealing with it.

Diabetes will do what it wants, when it wants. It will wake you up in the middle of the night because of a low blood sugar. It can throw your whole day off track because you make your plans around it. Diabetes itself comes with so many variables, between the devices and the effectiveness of medication, that it can oscillate no matter how hard you try to keep it steady. How can something like that possibly be under control? People with diabetes, like me, are given tools that are intended to help manage diabetes, certainly, but we have yet to receive something that allows us to influence it completely.

get lost in stockholm

If I had to take a stab at guessing what people thought “in control” diabetes looked at, it would be more than just the “perfect” flat-lined CGM graph. It would be more than going to bed each night and waking up every morning, having just enjoyed an uninterrupted, sound night of sleep. It would be more than having the freedom to make spur-of-the-moment choices regarding a daily routine or diet.

But for now, I’ve accepted that my diabetes is something I manage rather than control…but I also accept my refusal to let it control me.

Not too long ago, someone told me that my blog wasn’t really a form of diabetes advocacy, a point that I strongly refuted.

Advocacy looks different to everyone, and people can be advocates in countless ways. I think it depends largely on 1) what someone is trying to advocate and 2) their personality. For instance, maybe someone is really good at fundraising and wants to raise money to donate to a particular charity. Perhaps someone thrives from advocating at the group level, whereas another person prefers to do it individually. Maybe political advocacy for a cause like diabetes is right up one person’s alley, and another person is more comfortable with using social media to raise awareness and interact with others in an environment like the diabetes online community.

If you haven’t guessed it by now, my preferred way to partake in diabetes advocacy is blogging. I feel that writing down my story, whether it’s lessons I’ve learned over the years or mundane anecdotes about life with diabetes, is the form of advocacy that makes the most sense for me. It allows me to open up to a large, eclectic audience (i.e., the entire Internet) and show them what it’s like, to some degree, to live with diabetes. I keep things real in my posts and write about the good, the bad, and the ugly when it comes to T1D, and to me, that is advocacy.