“I’m a big brave dog, I’m a big brave dog, I’m a big brave dog…” is a mantra that little Chuckie Finster repeats to himself, over and over again, in an episode of The Rugrats that I recall vividly from my childhood.
It’s probably so cemented in my memory because I identified a lot with Chuckie as a kid – I was constantly overly cautious, nervous to try new things and scared about breaking rules or going against the norm. While I’ve overcome many trivial fears as I’ve gotten older, I still don’t think that I’m brave, despite many people telling me that I am…almost always in the context of my diabetes.
“You inject yourself with actual NEEDLES?! You’re so brave!”
“You wear two medical devices at all times? You’re so brave!”
“You put your diabetes story out there to share with others? You’re so brave!”
These are comments I’ve received from family, friends, and total strangers over the years, and while I appreciate the sentiment, I definitely don’t think that my diabetes has made me brave. I do these things because I have to. If I chose to not take care of my diabetes, or talk about my lived experience with it, I would be a much less healthy and happy individual. In my opinion, this isn’t equivalent to bravery – it’s common sense. It’s my reality that I accepted a long time ago.
As someone who is generally anxious and constantly worried about so many things besides diabetes, I’d much rather be admired for being brave about anything else that doesn’t remotely relate to my diabetes. Call me brave for trying something new that I was genuinely terrified about, or maybe say “you’re so brave” in a situation in which I took a stand for something I believe in. Hell, I don’t even mind if you continue to think that I’m brave in my journey with diabetes, but just recognize that my diabetes doesn’t make me brave – there are so many other facets of life that require genuine courage and spirit, and for me, I prefer to think of my diabetes as one teeny, tiny speck in that much larger, grander picture.
A version of this blog post was originally published on Hugging the Cactus a couple of years ago. I’ve updated it and am sharing it again today because it still rings true – I’m good at minimizing my diabetes. Multiple aspects of it, in fact. Read on for more…
I was just sitting here, minding my own business when I got to thinking about how good people with diabetes tend to be at minimizing.
I speak for myself, and some other people with diabetes I know, when I say that we’re really good at making it seem like it’s not a big deal. We manage a 24/7, 365 chronic condition like it’s not the full-time job that it is. I have family and friends who occasionally pick up on this and marvel at my ability to be present in a myriad of social situations while discreetly watching my blood sugar levels or calculating insulin dosages. I rarely act like diabetes is as serious as it is and that’s because I’ve become an expert at making it seem like small potatoes in my life. And I’m not just good at minimizing my diabetes – I’m also highly proficient in minimizing the fact that it has forced me to make difficult decisions in my life, particularly when it comes to financial choices.
I’ve conversed with plenty of other people with diabetes about whether or not we, as individuals, have struggled to afford insulin. Most have been pretty lucky and have never really had to resort to making truly difficult choices when it comes to affording insulin or other diabetes supplies.But just because I’m able to afford insulin, that doesn’t mean that I haven’t had to make certain choices that I might not have had to make if I didn’t have diabetes.For example, when it comes to my career, I’d never consider a job that doesn’t offer solid health insurance plans. Even if my strongest desire was to be a freelance writer, I wouldn’t go through with it because I know that it would be challenging to figure out my health insurance. And I know that the minute I run out of FSA dollars each year, I start thinking about setting money aside just to cover the costs of my diabetes supplies…which means that instead of buying some new clothes or planning a weekend getaway, I sometimes have to sacrifice those luxuries in favor of ensuring I have enough money to cover my fixed expenses as well as my diabetes medications.When I think about it, of course I realize that it’s not fair, but haven’t really considered it before because this is just how it is. I’m used to it. And so are many other people. We’re all accustomed to having to make certain choices about our lifestyles or spending habits that minimize the larger issue of insulin affordability. We’re used to it, even accepting of it, but that doesn’t make it right and it certainly underscores the terrifying fact that too many people simply can’t afford insulin and have to make much tougher decisions in order to get it.It’s time to become a little less good about minimizing and better at vocalizing – not just the seriousness of diabetes, but also the dire nature of insulin affordability and access that affects millions around the world.
This time last year, I was under the impression that I’d be heading to the Friends for Life Orlando conference that is held each July.
It was supposed to be my “triumphant return” to in-real-life diabetes meet-ups. There were so many individuals I’d hoped to either reunite with or meet for the first time.
Obviously, the pandemic totally changed my plans – as well as everyone else’s.
I was upset for awhile, but took consolation in the fact that the FFL team worked hard to turn it into a virtual conference. IMHO, I think they did an excellent job, and I remember signing off from that one feeling hopeful to attend it in-person in 2021…
…except I just don’t think that’s going to happen for me this year.
As far as I’m aware, the CWD FFL Orlando conference is on and in-person for 2021. But I, personally, am not comfortable attending. I know this won’t be the case for everyone and that’s okay. Yet I still feel compelled to explain why I’m not going to attend and how this makes me feel.
I don’t feel good about traveling, well, anywhere these days. I have a lot of anxiety about it, so much that any type of getaway, as nice as it sounds right now, just wouldn’t be worth it in the end because of how much worry I’d have about the trip.
And of course I’m sad about this. Of course I want to escape somewhere, and OF COURSE I’d love the chance to see my diabetes community in person. I find that in-person interactions are so much richer and fill me with a sense of gratitude and camaraderie that just can’t be matched online. Plus, I feel that it’s much easier to forge genuine connections when interacting with others face-to-face…I struggle to keep up with all the tweets, Instagram posts/stories, and Facebook threads, so instead of trying to weed my way through them all, I typically just don’t engage whatsoever. I simply can’t find enough time to comment as much as I’d like, which means that I miss out on some great opportunities to satisfy my need for conversation with the diabetes community.
As much as my decision not to attend bums me out, I do take some solace in knowing that there are others in the same boat as me. And I also feel reassured thinking about how hopefully, this time next year, I will be planning my true comeback to the wonderful world of diabetes conferences (in the wonderful world of Walt Disney, to boot).
If I could cure diabetes for myself, my mom, my aunt, and all other people living with it, I would in a heartbeat, no question.
Unfortunately, I don’t have that capability, so I can’t change the fact that diabetes exists. Another thing I can’t change is that I was only four years old when I was diagnosed with it.
But let’s talk in hypotheticals here for a moment: If I could change the age that I was diagnosed, would I? Why or why not?
The answer is a resounding no, and here’s why.
I grew up with my diabetes. I don’t remember life before it. I don’t recall a time in my life in which I was finger-prick free or able to eat whichever foods whenever I wanted.
That might sound sort of depressing, but for me, it’s better that way.
I never have to long for the “before times”. I never have to look back on a time in my life that was hard because diabetes rudely interrupted it, causing a swift, drastic change to my daily routine. By the time I was old enough to start really recalling specific events, I already had diabetes. As far as I’m concerned, it’s always just been a part of me.
Some might argue that it’s “better” (imagine that I’m air-quoting that because it’s never better to have diabetes) to be diagnosed with something as life-altering as diabetes in adulthood, or at least in the teenage years, because comprehension of what it is, exactly, is stronger. I’d imagine that the adaptation of new technologies is easier, too, seeing as teenagers/older individuals tend to pick up on these things faster than, say, a toddler that is needing to learn how to safely use an insulin pump.
But for me, it’s been good to learn about diabetes as I’ve matured. As a kid, I just knew it was the thing that prevented me from eating certain foods at certain times, and that I needed my parents’ help at mealtimes in order to calculate carb intake and bolus amounts. As a teen, I started to actually learn the science behind diabetes in various classes I took throughout high school, and expanded on that knowledge in college by taking a nutrition course that taught me all about the glycemic index and how that impacts blood sugar. And as an adult, I’ve been able to make informed choices regarding the use of insulin pumps, CGMs, and other matters of that nature that require some research and understanding.
And more important than anything else…being diagnosed with diabetes at 4 years old had zero impact on my quality of life. I had a wonderful childhood and all the credit goes to my parents, who made sure that I was raised knowing that diabetes couldn’t stop me from doing anything. I know they would’ve handled a potential diabetes diagnosis later on in my life with an equal amount of grace and strength, but the fact that I grew up with it meant that we all, as a family, grew up with it as a normal part of our lives.
So even though I’ll never be okay in the traditional sense of the word that I have diabetes, I am okay with getting diagnosed as a little kid.
And just like that, we’ve somehow, bewilderingly, arrived at the final day of National Diabetes Awareness Month 2020.
Not sure how that’s possible considering it should still technically be March 2020 (you know, when shit hit the fan), but here we are!
At the beginning of November, I really wasn’t sure that I was ready to don my diabetes advocacy hat and amp up my awareness efforts for the entire month. I’ve had enough going on in my personal life (spoiler alert: I bought a condo and moved into it at the start of the month) and as a result, I’ve spent much less time on social media and a whole lot more doing my very best attempt at adulting.
And despite that, I still found myself immersed in advocacy efforts – and blown away by what everyone else in the diabetes online community was doing.
Daily posts, live IG videos, fundraising efforts, and so much more happened all month long. They were inspiring, educational, and highly motivational to someone like me who was tepid at best about diving into advocacy activities this year. They were definitely enough to encourage me to keep posting for one of the many diabetes-themed Instagram challenges for the month. As minor as it was to write captions each day based on the prompts, it’s still what worked best for me in this weird year.
My big takeaway from this, though, isn’t that I should have done more or that I should feel guilty for doing the bare minimum…no, it’s a reminder that advocacy doesn’t take place during a single month or on one day.
Advocacy is a year-round thing.
I’m proud to talk about diabetes practically every damn day in some shape or form because I think that it helps people in my life realize that diabetes itself is a 24/7, 365-kind-of gig.
And I’ll keep talking and writing and expressing and advocating ’til the day there’s a cure for it.
Before I dive into this post, I want to make it abundantly clear that I don’t know the answer to this question. I’m not judging how anyone reacted during the recent Dexcom G6 outage, nor am I stating that there was a “right” or a “wrong” way to handle the situation. I merely think it’s important to ask ourselves questions like this when things don’t go according to plan with diabetes care/management.
Alright, now that I’ve got THAT out of the way…
For the last several days, the DOC has been in a bit of a panic. And when I say “bit” I mean “a helluva lot”. That’s because the day after Thanksgiving, Dexcom Follow stopped working. This means that parents/caretakers who rely on the technology to monitor their child’s/loved one’s blood sugar levels were left in the dark. It sparked confusion, outrage, and downright fear, all of which only seemed to intensify over the weekend and into this week when the problem was only partially solved for most users.
Rather than coming together to support one another, the DOC swiftly divided into two camps: The first consisted of individuals who sought to gently remind others that this technology is still pretty new. It hasn’t even been around for two decades. That meant that for many years before then, people with diabetes were doing things the “old school” way, and getting by just fine. Doesn’t this mean that we should all be able to make it through unexpected technology blackouts, knowing that we have our blood sugar meters to fall back on?
The second camp was in a greater fury over the issue. This camp relied on the Dexcom G6 system because those within it simply didn’t know a life without the continuous glucose monitoring technology. For them, the outage was a bit like asking them to Google something without access to the Internet – it’s pretty much impossible, unless you’ve got an Encyclopedia handy. Oh, and it’s MUCH higher stakes, because people who don’t recognize symptoms of low or high blood sugar need this technology to work in order to stay on top of fluctuating blood sugar levels. Let’s not even get into how much is PAID for this expensive piece of medical equipment…one would argue that the high cost of supplies means that the technology should work at all times, no matter what.
If you’re like me, you can see that both of these groups have perfectly valid points. I’ve had diabetes long enough that I didn’t even use – and didn’t see the point in using – continuous glucose monitoring or insulin pumps until a few years ago. I took care of my diabetes the old fashioned way growing up: doing fingerstick checks multiple times per day, treating low blood sugars with 15 carbs then waiting 15 minutes, checking blood sugar levels about an hour after injecting insulin to make sure highs were coming down the way they should. This way of handling diabetes worked for me for a long, long time…throughout elementary, middle, and high school, right up to college.
Then I got a continuous glucose monitor (I believe it was the Dexcom G4) just before starting my freshman year of college. And I haven’t really been without a CGM device since then. It’s changed my life and helped me navigate adulthood with diabetes. Whenever I do experience periods of the technology not working the way it should, it’s infuriating because I feel like it’s not worth throwing away buckets of cash on it in those periods of inconsistency and inaccuracy.
But here’s what I’m wondering, as a result of this Great Dexcom G6 Outage of 2019…do we take this technology for granted?
Do we truly appreciate the times that it works the way it should?
Do we expect too much from something that, technologically speaking, still has a long way to go in terms of working perfectly?
Do we rely too heavily on continuous glucose monitors to provide us peace of mind when, in reality, they simply provide us with real-time updates of our blood sugar levels (i.e., it’s a stream of data)?
I don’t have answers to these questions. I can reflect on my own answers to them; furthermore, I can ponder how and why the DOC gets so divisive in these times where we should try to come together, listen to (and learn from) differing perspectives, and figure out what we can do to best support one another during trying times.
I’m not a medical professional by any stretch of the imagination. But I am a highly opinionated person who happens to have a chronic illness and who feels strongly about vaccinations such as the flu shot.
So with that in mind, let me say that I truly believe it’s of the utmost importance that you get your flu shot this fall.
Whether you have diabetes or someone you know and love has diabetes, you need to help protect yourself (and your loved one) by getting your flu shot. Why? Because it’s common knowledge that people with diabetes simply have weaker immune systems. I’ve made it a practice, along with many other people with diabetes, to keep up-to-date on this vaccination annually because I know how easy it is to get it – and actually, I was excited to get it done this year because my best friend since childhood administered it to me herself. I’ve never had so much fun getting a shot before!
Yes, I know, not everyone is as fortunate as me to have a best friend who will stick you in the arm to help protect you during this year’s flu season. But it doesn’t matter who gives it to you, just get it done.
It doesn’t matter if you’re afraid of needles (besides, they have nasal flu vaccines).
It doesn’t matter if you have a “great immune system” and “never get sick”.
It doesn’t matter if you don’t think you have time to go and get it done, because really, if you have time to read this post then you definitely can hit up your local pharmacy for a quickie shot.
I’ll get off my soapbox for now, because I’m sure you’ve stopped reading this post now in order to figure out when and where you can get yours! 😉