3 Reasons Why I Tell Most People I Meet About My Diabetes

September 27, 2023September 20, 2023 mollyt1d1 Comment

There’s a running joke in my family that I don’t shut up about diabetes.

This is partially true. I do talk about it an awful lot, whether it’s via this blog or at family gatherings when my devices are alarming (or when the other 2 T1Ds in my family have their tech going off, as well – it’s a downright symphony of sound that’s tough to ignore). While it’s definitely not my go-to discussion topic in most situations, it is something I tend to mention when I’m meeting new people. As I thought about why, exactly, I do this, I realized it came down to three reasons:

It promotes safety. I feel so much safer knowing that the people around me are aware of my diabetes. They know that the sounds emitting from the devices that I’m wearing on my body are for a medical reason, and it’s not me being rude/inconsiderate with disruptive noises. They know that there may be times in which I need to take a few minutes to address my blood sugar, whether it’s high or low, and that it’s not something they should take personally. And it gives me a chance to let them know what, if anything, they should do in certain scenarios. So it’s not just a matter of looking out for my own safety, it’s also about the people that I’m with and empowering them with the information they need to know about my condition.
There’s less mystery. Humans are curious by nature. So curious, in fact, that I’ve had dozens of perfect strangers approach me over the years and ask me what “that thing” on my arm is. While this behavior is far from charming, it at least resolves any curiosity someone might have about what it’s like to live with type 1 diabetes and gets a conversation going about it.
I have an opportunity to defeat diabetes stigma. The best case scenario when I meet someone new and they’re wanting to talk about my diabetes is that it isn’t just a “one-and-done” type of conversation. It evolves into an ongoing one as they ask me increasingly thoughtful questions and discover that what they thought they knew about type 1 diabetes is actually just stigmatized or downright incorrect. It’s a good learning opportunity for new people in my life, as well as a reminder for myself that I likely will always need to be prepared to explain type 1 diabetes to anyone I meet who doesn’t realize what it means to have it.

While some might find it burdensome to bring up diabetes over and over again as jobs change, social circles expand, and living situations evolve, I truly believe that the pros outweigh the cons here. I’ve wracked my brain the entire time while writing this blog post in search of a memory of a time that it didn’t go well, but truthfully I can’t recall a single time in which me bringing up diabetes was met negatively. So from my point of view, why not continue to share it with new people that I meet? As long as I’m not kicking off every introduction with “Hi, I’m Molly and I have type 1 diabetes” (which I absolutely DO NOT do and wouldn’t recommend anyone doing, as it brings to mind a certain character from South Park), then I think it’s good to be upfront about it and let conversations around it flow naturally for the reasons above, at the very least.

Diabetes Representation Matters

August 28, 2023August 23, 2023 mollyt1d1 Comment

I’ve never really sat and thought about the power of seeing diabetes represented in media. Mostly, if diabetes is ever seen or mentioned in a TV show or podcast, it’s the butt of the joke, or portrayed with the slightest (or extreme, there’s no in-between) inaccuracies.

I guess the only time that I ever really considered it is when I weighed my experience filming a Dexcom G6 commercial (which you can read about here or watch here) against the knowledge that some other diabetes companies don’t have people who actually live with diabetes in their commercials; instead, they hire actors. I was – and still am – beyond grateful that Dexcom chose me and other people living with diabetes to be part of the G6 marketing campaign. It made me feel seen and heard, and perhaps inspired my mild irritation over the fact that other companies have chosen actors to appear in their ads. Actors can certainly pretend to know what it’s like to wear our devices or deal with diabetes 24/7, but the stark reality is that they have no clue – and let me tell you, it’s a lot more difficult than these commercials filled with smiling, happy people portray.

Anyways…the concept of diabetes representation mattering in a variety of contexts was driven home to me when I agreed to participate in a social media campaign for my pole fitness studio. All I knew was that the owner was going to film my very full level 1 class one night, and I had no idea if I’d actually appear in any of the footage selected for the Facebook/Instagram ads. Admittedly, I didn’t really care either way because I was just focused on learning the climbs, spins, and poses taught to us that evening, so I gave my permission to appear in the ads without a second thought. Imagine my surprise when, weeks later, I noticed a 3-second clip of myself climbing woven into one of the ads!

When I first saw it, I was a little embarrassed because I’m just naturally self-conscious and my form looked off in the video. But as days went by and it popped up every now and then on my social media feeds, I grew accustomed to it and let my inhibitions fade away. Any lingering anxieties over my appearance, though, turned into a burst of confidence and pride when this comment on the ad caught my eye one day:

Love that you feature someone with an insulin pump!

It’s funny how 9 words written by a total stranger on the Internet made me feel so good. It really serves as proof that representation does make a difference in defeating diabetes stigma and giving a normally invisible chronic illness greater visibility.

Thank you, random person who commented on this ad, for reinforcing that almost-forgotten notion for me.

Hardly Focused on Diabetes

July 31, 2023July 28, 2023 mollyt1d1 Comment

This blog post is gonna hardly focus on diabetes.

But for real, this particular post isn’t so much about my diabetes and more so about my recent experience recording an episode of…the Hardly Focused Podcast.

Admittedly, I was slightly confused when my former colleague from an old job reached out and asked me to be a guest on a podcast he co-hosts. Why the confusion? Well, I wasn’t really sure what value I’d add to it seeing as it’s the first non-diabetes-related podcast that I’d be appearing on. Upon further conversation (and a little bit of my own research), I realized that the name “hardly focused” is hardly an exaggeration. The whole point of the show is to run the gamut of possible discussion topics. They’ve had guests come on to chat about everything from news, politics, sports, and pop culture, and I’ve got to say that such a varied show increased my interest because I liked that the gentlemen behind the podcast were open to talking about, well, anything.

So I agreed to join them for an episode recording, and I’m so glad that I did. I really appreciated the opportunity to talk about diabetes with people who admitted that they knew next to nothing about it. (See my most recent post for more on that topic.) I haven’t had the chance to dig into diabetes basics in a super long time, so it was a nice brush-up for me on how I choose to speak about my individual experience with it. Not to mention, it was pleasant to do so with two co-hosts who asked thoughtful questions and clearly knew how to keep a podcast interview going.

My episode of Hardly Focused will be available on Apple Podcasts, Spotify, and wherever else you listen to your podcasts later this week. In the meantime, check out the YouTube recording of the episode below:

It’s Okay to Admit Ignorance About Diabetes

July 26, 2023July 25, 2023 mollyt1d2 Comments

I’ve lived a quarter of a century with diabetes and I’d 100% be lying if I said that I knew everything about it. Hell, I’m not even an expert on my own individual experience with it, as it has changed (and will continue to change) over time. I recognize that I am not well-versed in all aspects of it, and certainly not when it comes to any other type of diabetes besides type 1.

That’s why when I recorded a podcast earlier this week (which I’ll be posting about here next week, be sure to tune in) with two hosts who admitted that they knew next to nothing about diabetes, I applauded them for sharing that with me.

I appreciated their transparency, and quite frankly it made recording the episode so much easier because I was able to reassure them that no question they asked me would be a silly one. We had a candid back-and-forth about how a portion of society tends to act like they are subject matter experts on diabetes, and I was able to express my frustration with that mindset because of the stigma it perpetuates around diabetes. It’s a lot more difficult to talk to people who claim knowledge on the diabetes subject when this “understanding” of diabetes is only obtained via hearsay or information gleaned from online forums that are filled with judgment or only small bits and pieces of the broader diabetes puzzle.

It’s uncomfortable to admit to a person or to people that you don’t know well that you’re feeling vulnerable or uneducated about a topic, but I’ve found that in doing so, the best and most natural conversations take place as a result. I walked away from the recording feeling grateful for the opportunity to speak to open-minded individuals who merely wanted to hear my perspective, and the experience served as a reminder to me to be objective in my own conversations that I have with others on topics I’m less-versed in, and to just listen and learn to get the most out of them.

Yes, I Can Eat That

April 26, 2023April 25, 2023 mollyt1d3 Comments

This blog post was originally published on Hugging the Cactus on March 7, 2022. I’m sharing it again today because I (and other people with diabetes) constantly battle the misconception that I can’t eat foods that contain sugar/carbohydrates. Why, just the other day, someone who has known me since I was 12 years old made a comment about how I couldn’t eat cookies! In that situation, I smiled politely and gently corrected the individual, but the bottom line remains: This is some diabetes stigma that I’d like to defeat. Read on for more…

Yes, I have diabetes.

Yes, I can eat cheesecake and pizza.

Yes, I can actually eat whatever I want – I just have to know the carbohydrate content of whatever I’m consuming (and being mindful of portion size doesn’t hurt either).

Yes, I’m telling you this because at the time of this writing, that’s actually what I had for lunch this afternoon: homemade pizza and cheesecake. The pizza crust was store-bought, but everything else – from the sauce to the cheesecake crust to the strawberry topping – was made by me and it was damn good.

I guess I’m just taking a moment to 1) congratulate myself on semi-mastering the home-cooked versions of these two foods, but also to 2) reflect on how there’s so much stigma, STILL, on what people with diabetes can/can’t or should/shouldn’t eat. It’s wild to me that there are countless people in our world who misunderstand that a diabetes diagnosis automatically eliminates certain food groups from an individual’s diet.

Let me say it louder for those in the back who can’t hear: People with diabetes can eat whatever they want. Diabetes varies from person to person, and so do dietary preferences – so just because one person with diabetes might follow a strict keto diet, it doesn’t mean that ALL people with diabetes do. It doesn’t make it right or wrong for a person with diabetes to choose or not choose to eat certain things – period, bottom line, end of the story.

And by the way – I took a big old bolus of insulin for aforementioned pizza and insulin and my blood sugar didn’t spike past 188 mg/dL several hours later – score! So I’m also using this blog post to remind myself that it’s okay to eat “treat” foods like this from time to time, and that does not make me a bad diabetic.

AITA: Diabetes Edition

April 24, 2023April 18, 2023 mollyt1d1 Comment

If you aren’t familiar with the acronym AITA, then let me break it down for you: It stands for “am I the asshole”?

It stems from Reddit, which is basically a ginormous discussion thread website. It provides a forum for people to post stories in which they’re unsure whether they’ve acted like, well, an asshole. Then other folks who see the initial post can chime in with their opinion on whether they think yes, the OP (original poster) did act selfishly/foolishly/asshole-ly or no, the OP acted in accordance with what they would have done, had they been in that person’s shoes. It can be a wildly entertaining guilty pleasure to fall down the rabbit hole of these discussion threads and deduce for oneself if a perfect stranger on the Internet did indeed act like an asshole in a given situation or not.

I found myself immersed in one of these AITA threads that my cousin sent me because, of course, it had to do with diabetes. Long story short, the OP wondered AITA for moving their roommate’s insulin out of the way, causing said roommate to panic and be forced to resort to an emergency insulin supply because they were unable to locate what had been stored in the refrigerator. Now, in just that context alone, I would’ve said that the OP wasn’t an a-hole because they probably just didn’t know any better, but as I scrolled further along in the thread I discovered that they thought it was fine to do and that diabetics were fine in historical times when there was no refrigeration. And he took his ignorance a step further by posting a comment about how he didn’t know what the big deal was about taking a vial of “sugar water” – yes, that’s what he called insulin – out of the fridge.

That’s when I immediately realized, yep, the OP can wear the AITA crown with certainty. This whole anecdote might come across as a teensy weensy blip in the universe of Internet discussion threads, but to me, it stands out as a perfect example that even people who are closest to those living with T1D can get such a significant detail about it so, incredibly wrong. And it’s proof that we’ve got a long way to go in terms of educating the world on the importance and purpose of insulin, apparently, even though stories about it have hit so many headlines in recent years.

TL;DR (another Reddit acronym meaning too long; didn’t read): Let’s get it straight, now, that insulin is a life-saving medication that needs to be stored properly in order for it to be used – and IMHO (in my humble opinion), never take it away from a person living with diabetes without asking them about it first.

My Thoughts on That Insulin Cap News

March 13, 2023March 8, 2023 mollyt1d1 Comment

Just over a week ago, Eli Lilly announced a 70% reduction in price for its most commonly prescribed insulins that resulted in a cap of patient out-of-pocket costs at $35 or less per month.

This news was huge and spread like wildfire across the diabetes online community. And for good reason – it’s something that so many people with diabetes have needed to happen for a very long time. Most reactions I saw were that of complete and utter joy and relief. I’ll admit that’s what I felt at first, too, until I saw the more displeased responses that directed additional frustration and rage at Eli Lilly for not taking this action sooner, or reducing the cost of insulin to make it free altogether. Those posts got me thinking.

I’ve had time to reflect and gather my thoughts on the matter, and I think I land somewhere between thrilled and bummed, myself.

This news is absolutely something to be celebrated, as it will undoubtedly assist people who struggle to afford insulin with astronomically high price tags. This is an issue that I’ve spoken about on the blog before, and while I feel very fortunate to never have personally struggled with affording my own insulin (though I’ve certainly complained about out-of-pocket costs in the past), I’ve read countless stories about individuals in the United States who’ve had to take drastic measures in order to obtain this life-saving medication. So this news is wonderful, for sure, but it also feels a little too late.

Is this response from Lilly induced by the pressure that they’ve felt from diabetes advocates in the last several years? Is it a genuine call to action to other insulin manufacturers to follow suit and slash prices? Is it all just some sort of PR stunt? My suspicion is that it’s a mixture of all three, and while this feels like a victory for now, I don’t think that I will personally be satisfied until all people with diabetes are able to get insulin for free – no bottom line, no gimmicks, no nothing other than access for all.

My Diabetes Does Not Make Me Brave

March 8, 2023March 7, 2023 mollyt1d1 Comment

“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.

7 Questions People Always Ask Me About Type 1 Diabetes

March 6, 2023March 3, 2023 mollyt1d1 Comment

This was originally published on March 1, 2019 on Hugging the Cactus. I’m sharing it again today because these questions (and answers) are truly timeless: I feel like I’ve been answering them to a certain degree for the last 25 years, and I fully expect to have people continue to ask me these questions in the future. Fortunately, as someone who enjoys being a diabetes advocate, I don’t mind answering them and providing insight…but that doesn’t make some of these questions any less eyeroll-worthy. Read on to see what I mean…

Human beings are naturally curious creatures. So it’s never really surprised me when, upon discovering my T1D, people tend to ask me boatloads of questions about what it’s like. And it’s definitely not at all shocking that many of these questions are recurring.

Here’s a list of seven questions that I’m almost always asked when I encounter someone who’s just learning about my diabetes. You’ll notice a trend as you read, because even though there’s “no such thing” as a stupid question, this list kinda gets dumber as it goes on. There, you’ve been warned…

7. What does it mean when your blood sugar is high/low?
This is definitely a fair question. I never expect someone who is unfamiliar with diabetes to know the meaning of hypoglycemia or hyperglycemia. I actually kind of appreciate being asked this question, because it helps me spread awareness. The more people that know how to react in severe high or low blood sugar cases, the better, IMHO.

6. Why do you wear all of those devices?
Another decent question – I never mind explaining how my CGM and my pump work, but I do mind when people say ignorant things, like “Oh, are those patches to help you quit smoking?” *Eye roll*

5. Can you eat/drink [fill-in-the-blank]?
Ugh…I get why people ask me this, but it’s a little more tiring to explain. My answer is usually along the lines of: “I can eat or drink whatever I like, but I need to take insulin to account for it. So I try to eat a limited amount of carbs at a time, because that means I have to take less insulin, and there’s less room for error.” But even after that easy-to-understand explanation, the typical follow-up questions are “BUT CAN YOU EAT CAKE/COOKIES/ICE CREAM/ANY SUGARY FOOD?!” And that’s when I lose a bit of my patience, TBH.

4. Does it hurt when you check your blood sugar/give yourself a shot?
I mean, no? I’m not trying to be facetious or anything, but really, after 21+ years of checking blood sugar and giving myself insulin multiple times per day…there’d be a real issue if it hurt every single time. I concede that there are the occasional sites that sting, but it’s not nearly as bad as many people seem to assume.

3. What’s that beeping sound/ARE YOU GOING TO EXPLODE?!
Honestly…use common sense. What’s the likelier scenario here: That my devices have built-in alarms, or that I’m going to spontaneously combust?

2. How did you get diabetes/WHAT DID YOU DO WRONG?
This. is. such. an. ignorant. question. Nobody, myself included, did anything “wrong” that resulted in my diabetes diagnosis. I didn’t catch it and no number of lifestyle changes could have prevented me from developing diabetes. My immune system merely decided to attack and destroy the insulin-producing beta cells that lived in my pancreas. There’s no real answer as to how diabetes is caused, though genetics likely play a role in it. Don’t worry, you won’t “catch” the ‘betes by being in my presence.

1. Do you have the…bad kind of diabetes?
This question is THE WORST of them all because there is no good kind of diabetes! Gestational, type 2, LADA…none of them are favorable. They all suck. They all require constant care, regulatory medications, and endocrinology expertise. So please for the love of all that is sacred and holy, next time you hear someone ask this question, gently inform them that there’s no such thing as good/bad diabetes.

Yes, I Can Eat Cheesecake and Pizza.

March 7, 2022March 1, 2022 mollyt1d1 Comment

Yes, I have diabetes.

Yes, I can eat cheesecake and pizza.

Yes, I can actually eat whatever I want – I just have to know the carbohydrate content of whatever I’m consuming (and being mindful of portion size doesn’t hurt either).