There is a Twitter hashtag going around called #IWishPeopleKnewThatDiabetes and I encourage you to check out the stream to see what others are saying. This is a reflection on that hashtag and also a conversation I had a with a non-PWD (person with diabetes) friend last week.
Last week, I was driving home from a Junior League event with a new friend when the topic of my diabetes came up (in the context of blogging and what I write about).
My new friend asked me if my diet was very restrictive and I sort of snorted and said, “I ate a cupcake tonight, didn’t I?” Clearly, I’m not a very restrictive diet. Some people with diabetes choose to be, of course, and that’s because that’s what makes them feel healthier. Depriving myself does not make me feel healthier and so that’s not what I do.
And so my friend asked if my diabetes was a pretty easy to control. I paused.
I told her, “Sometimes diabetes is barely noticeable. And sometimes it’s a living nightmare.”
I think that it would be easy to think that diabetes was pretty easy to manage just from watching what I do. A lot of diabetes is mental — the carb counts, the adjustments for exercise. If you’re eating dinner with me, you might see me test my blood sugar and bolus, which takes all of 30 seconds. But there’s a lot of mental gymnastics that takes place while I’m thinking about what to order, while I’m waiting for the food to arrive, and even after I finish eating.
- Choosing what to eat doesn’t just involve what I’m in the mood for, it also depends on what my blood sugar is and whether or not I need to stick to something more low-carb and protein-heavy, or if my blood sugar is on the lower side, maybe I want to take advantage of that and order pasta.
- While I’m waiting for food to arrive, I’ll think about how I want to bolus — should I take some insulin now and some over a longer period of time to account for the fat that slows down digestion? And what percentage do I take now? Over how many hours do I think it will take my stomach to digest and absorb this food?
- When I’ve finished eating, I’ll keep tabs on my continuous glucose monitor to see if I was right or I’ll pay attention to my physical symptoms if I’m not wearing it (the CGM is a flawed machined that can get annoying with false alarms so I don’t wear it 24/7).
And this is just when I’m eating!
Of course, reading all of this — and also if you ever catch my diabetes rants on Twitter or Facebook — you might think diabetes is an all-consuming travesty on my life. And that’s not really the case either.
Sometimes, I don’t think about diabetes.
When I’m in class, diabetes rarely registers in my brain. When I’m watching television, having coffee with a friend, or reading, I can go long stretches of time without diabetes popping into my head. Unless diabetes rings the alarm with a low blood sugar, I usually don’t have a reason to think about it. If I feel fine, then I usually put diabetes off to the side and I try to stay focused in the present. Practicing mindfulness, I suppose, is one of my biggest coping mechanisms.
But there are a lot of times when I feel like I’m teetering right on the edge. When I’m running, for example. Or when I’m walking around the city, window-shopping. Or when I’m working. Or when I’m driving. Basically any time that I’m moving, because diabetes can have such disastrous physical effects when something goes wrong. I might not be actively thinking about diabetes in the same way I do when I’m eating, but I’m always aware. I’m constantly scanning my body, what I’m doing, what I’m going to be doing, what I just did. Making sure everything is flowing together. It’s like when you’re driving a car and you’re constantly scanning for other vehicles. You’re not actively using evasive maneuvers to avoid a head-on collision, but you’re ready. You’re on guard. You’re being safe by being prepared. All the time. Every day.
Diabetes is exhausting. It’s annoying. It’s frustrating. It’s unpredictable — you can do the same thing with the same meal and have two different results. It’s stupid crazy. It’s weird. It’s funny (sometimes). It’s painful. It’s loud. It’s buzzing and beeping. It’s not something I would wish on anyone, but it’s something that everyone can live a long, healthy and happy life with.
What I wish people knew about diabetes is that diabetes isn’t one thing. It’s not a piece of cake (pardon the pun) and it’s not the absolute worst thing that has ever happened to me. It encompasses a huge spectrum of feelings, both physical and emotional. It can run the entire gamut in a single day or it can stay pretty steady. Diabetes is not something I will ever be able to sum up in a 140 characters, or a blog post, or even an entire blog.
What I wish people knew about diabetes is that it is really hard to understand, even for those who have it. But we really appreciate it when you try.