Type 1 Diabetes is exhausting.
It’s tiring enough being a human in general, but having to take on the role of an organ tends to complicate things.
As I type this, my eyes are puffy from a night of barely any sleep thanks to a blood sugar rollercoaster.
I’ve always been very open about my disease. I strongly believe that by sharing my story, I can help educate the world…and in turn, change it. If all of us with chronic illnesses (or whatever the case may be) spread knowledge and awareness to our tiny corners of the universe, someday this information will be second nature to everyone—healthy or not.
If you follow my personal Instagram account, you see me post multiple stories per week about my life with T1D. But I haven’t always been so open on the Instagram account associated with my blog, @haleyslifeincolor.
That probably seems weird since I have an entire section of my blog dedicated to health—mainly diabetes. But I’ve always struggled with the social media aspect of it. Instagram is such a highly curated platform and we tend to only show the highlights of our lives, not the mundane or, frankly, shitty parts. I always thought to myself, “no stranger wants to hear my complaints about a disease they know nothing about.” But I’m a very real person, and it started to feel wrong that I wasn’t being totally upfront with my followers.
Of course I can’t possibly share everything…and honestly, I don’t want to. Diabetes is a major part of my life, but it’s not all of it, and I never want it to be. I’m a writer, a fashion lover, a bookworm, a baker, a friend, a sister, a daughter…the list goes on, and “diabetic” isn’t at the forefront.
But it is something I deal with every single day—actually, every single moment—of my life. And that’s not nothing.
That said, I’ve been feeling even more exhausted lately than usual. In addition to the fact that my diabetes itself has been more out of control than it has ever been (another chat for another day), I’ve been spending time with a lot of new people between a new job and a fairly new city. People that aren’t used to the life-threateningly-ill-version of Haley. And as social and open as I am, and as important as it is to me to spread awareness about Type 1 Diabetes, it takes a LOT out of me to be in these new situations.
I tend to gloss over my disease when meeting new people. I try to laugh it off or make it seem less serious than it is. Honestly, it’s awkward to have a heavy, life-or-death kind of conversation in these settings. And I usually don’t know where to begin.
As I’ve mentioned before, even the people I’m closest to in my life don’t know half of what I deal with regarding this disease. And that’s not on them! It’s just easier to keep a lot of it to myself. After all, there are thousands of straight up textbooks about this one disease, and those just cover the physical aspects. There’s a lot to go over.
I can’t help but wish that we learned about Type 1 Diabetes (or autoimmune diseases in general) in school so that, at the very least, the basics would be covered. But we don’t, and the average person knows shockingly little about it. In fact, I knew nothing about it before my diagnosis almost twelve years ago.
Much worse than the lack of knowledge, however, is the ignorance. I don’t necessarily blame individual people for this ignorance (although I do think common sense and decency would prevent some of the comments I get!) because it’s how society has framed this disease. But damn, does it get frustrating.
So, I’m going to write out some of the questions and comments I’ve received in person over the past two weeks. Now picture getting these day after day…you’d be pretty exhausted too, right?
Note: this post may look familiar, as I wrote a T1D Q+A on the blog a couple of years ago. You can read that one for more general knowledge, but it was before I had an insulin pump, so this post is slightly more specific.
Please also check out this post about the very basics of diabetes. It’s the perfect “starter guide” for anyone with a functioning pancreas. There are a bunch of other diabetes-related posts here, too—just type “diabetes” into the search bar and voila!
Why do you have two phones?
The long lost cousin of “why do you have a pager?” While I don’t mind being asked what my pump is since it’s not an everyday tool for most people, this question is usually paired with a tone full of sarcasm or judgement. Come on folks…that’s never cool! For those that want to get technical, the pump “controller” that I’m referring to is actually called a PDM, short for Personal Diabetes Manager.
Do you have to wear that thing all the time?
As much as I wish I didn’t have to wear my pump all the time, I can assure you I don’t just wear it for fun. It’s not the cutest fashion statement and it’s kind of a pain in the butt. My CGM (Continuous Glucose Monitor) on the other hand is not life threatening to take off—I would just need to test my blood sugar manually with finger pricks all day long. The CGM has changed my life for the better, so I do get really sad when my prescription expires, though!
The fact that I even have to type this one out is pretty horrifying, but you’d be surprised how often I hear it. It’s always paired with a laugh, and I honestly think it’s just said by people who are uncomfortable and aren’t sure how to react. But, it’s never ok to joke about a person with a deadly disease, well, dying.
Can’t you just get one of those dogs?
Trust me, I would LOVE to have a Diabetic Alert Dog. Yes, there are dogs that are trained to sniff out your low and high blood sugars and harass you until you attend to it. But these dogs are about $20,000 and not a penny is covered by insurance, so it’s not feasible for most of us. Plus, it’s not a solution—it’s more like a living version of a CGM.
My grandmother had that, too.
Unless your family member had Type 1 Diabetes, please don’t compare me to them. In fact, don’t compare diabetics at all. We’re all different and have different needs. And if you don’t know which type they were, I can almost guarantee that they were not Type 1. While I wish nothing but positivity on Type 2 Diabetics, including your grandma, our diseases could not be more different. (And yes, some grandparents are Type 1 Diabetics…I hope to be one someday!)
Don’t eat that!
First of all, I can eat whatever I want as long as I calculate how much insulin I will need to cover the carbohydrates. Second of all, never tell a person what not to eat…or they may just eat you.
I could never do that.
I wasn’t given a choice. When people make this comment, the tone is less “wow, you’re strong!” and more “ew, needles, no thanks.” I would do anything not to have this disease, but that’s not an option. Not to mention needles are the absolute least of a diabetic’s problems.
Yeah, my aunt had to get her foot amputated.
You wouldn’t tell a person with cancer about all the people you know that have died of cancer. It’s just not a nice thing to do.
Do you have to do that for the rest of your life?
Yes. There is currently no cure for Type 1 Diabetes. I pray everyday that I will see one in my lifetime, though.
Did you eat too much sugar as a kid?
No. You do not get Type 1 Diabetes from eating too much sugar. In fact, there is nothing in the world that can be done to prevent T1D. If there were, I would’ve done anything, including witchcraft.
Do you have the bad kind?
I have Type 1 Diabetes. Yes, it is bad. No, it’s not that uplifting to hear it phrased that way.
My neighbor just takes a pill for that.
Type 1 Diabetics cannot take anything but injectable insulin to lower their blood sugar.
So you just wear that and don’t have to do anything?
I wish! At this time, pumps do not “do anything” for you. They simply cut down on the number of injections you have to give yourself. They also allow you to have a constant stream of insulin into your body, which mimics a “real pancreas” more closely than regular shots. But my pump does not communicate with my blood sugar monitor, it does not calculate carbs, and it does not prevent low or high blood sugars. I have to constantly tell it how much insulin I want when I want it.
A final note: I truly do love and appreciate when people ask me questions to genuinely try to understand my disease. I don’t want people to stop doing that, ever! All I ask is that you take a second to think before you speak, ya know? 🙂