Tag: Diabetes Advocacy

AITA: Diabetes Edition

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.

Advertisement

My Thoughts on *That* Insulin Cap News

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.

7 Questions People Always Ask Me About Type 1 Diabetes

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.

That “Thing” on my Arm

mollyt1d1 Comment

This blog post was originally published on June 12, 2019 on Hugging the Cactus. I’m sharing it again today because when you live with T1D, it’s inevitable that you’ll attract stares – and sometimes questions you’d rather not answer – from people who are befuddled by your diabetes gadgets and gizmos. This one encounter in particular is a great reminder that not all oglers have ill intent…read on for more.

“Yo, I don’t mean to be rude, but what’s that thing on your arm? Looks pretty cool.”

I turned around to face the stranger who was looking at me and asking me this question. It was well after midnight and we were on the rooftop of a fairly crowded bar. It was a balmy, summery night and I was enjoying the atmosphere with my boyfriend and my best friend. I’d had a few drinks over the course of the night, but judging by the state of everyone else on the rooftop, I was probably more sober than most of them.

That “thing” on my arm is basically my pancreas – please don’t stare at it, bro.

I could’ve answered his question in a scolding manner; it wasn’t a “thing”, it was a device that keeps me alive.

I could’ve totally dismissed him and told him to mind his own beeswax, because really, it is sort of rude to point out something on another person’s body.

I could’ve lied and told him it was something that it’s not to get him to stop bothering me.

I could’ve launched into an educational breakdown of what an insulin pump is and why my OmniPod looks the way it does.

I could’ve done any number of things, but instead I decided to say, “Oh, this is my insulin pump. I’ve got it decorated right now with a picture of a lighthouse because I like adding some style to it.” I smiled at him as a way of reassuring him that I really didn’t care that he was asking me, because I didn’t.

My straightforward answer seemed to please this random man. He told me again that he thought it was cool, and then we chatted a bit about where the lighthouse is and discovered we both have a connection to Massachusetts. Within a few brief moments, the conversation was over as we went our separate ways.

It was a perfectly harmless interaction that could’ve went a number of different ways, but to me, it’s all about context. This guy was just asking out of curiosity, and I truly don’t think he was trying to be rude about it. So I answered his question succinctly but good-naturedly, because I felt that was the only way to go about it in this busy party environment. Plus, let’s be real here…had I delved into a discussion about diabetes and devices, this drunk man probably wouldn’t have digested a single detail of my description. (Ahh, I love alliteration.) And another important point? He was damn right, my pump did look cool because of the lighthouse sticker!

But man, how much simpler it’d’ve been if I’d just been wearing my “THIS IS MY INSULIN PUMP” sticker on my pod that night.

Reflecting on National Diabetes Awareness Month 2021

mollyt1d2 Comments

Well, we’ve arrived at the end of another November, which means National Diabetes Awareness Month is drawing to a close.

What a time it’s been.

Another NDAM has come and gone.

I don’t know about you or anyone else, but it seems like all of my social media feeds were saturated with diabetes content all month long. This is due in part to my job, for sure, but outside of that it felt like diabetes was everywhere online. And overall, that’s a really great thing! To me, it shows that our community has a great sense of pride in our ability to be advocates and to dispel myths about a largely invisible and mostly misunderstood chronic illness.

The teensy-weensy downside to all that, though, is that I felt like a bit of a failure compared to everyone else.

Like I said earlier this month, I simply didn’t have the time or bandwidth to commit to anything specific for NDAM. The desire was there, but I didn’t think it would be right to participate in any daily postings or activities if the intention behind them was lacking authenticity. In other words, I didn’t want to be going through the motions this month of being a “good” advocate, I wanted anything that I did to serve the dual purpose of coming from the heart while also making a positive impact in the diabetes awareness space.

I’d like to think that I accomplished that, but as I inevitably saw the countless other posts from all the other incredible diabetes advocates in our online community, I still couldn’t help feeling like I could’ve tried harder. I could’ve devised a plan ahead of time to do something more significant…but I didn’t.

I guess it’s beginning to dawn on me that diabetes blogs are fewer and far between than they were a mere 5 years ago. I know there are other devoted diabetes bloggers out there, but it feels a lot lonelier than it did when I first started as people turn more and more to the more visually stimulating environments of Instagram and TikTok. Because of this, I think I’m my own worst critic – because I choose to blog about diabetes instead of posting about it in any other format, I fear that I’m not having the impact that I yearned to have on our community, thereby rendering anything I have to say on here semi-pointless.

However, just because I’m experiencing these feelings, it doesn’t mean I’m ready to cease blogging or believe that my form of diabetes advocacy is unacceptable. In fact, I think that in writing this post, I’m also realizing that diabetes advocacy is just like diabetes itself – there’s no one-size-fits-all formula. It will look different on all individuals.

So maybe that’s the attitude and energy I carry away from this NDAM and into the coming year…one that allows me to embrace the kind of diabetes advocacy that I enjoy, that I (hope) am good at, and that continues to connect me with others all around our community.

What I Wish People Knew About Life with Diabetes

mollyt1d1 Comment

As National Diabetes Awareness Month speeds by in a lightning-fast pace, I keep finding myself going back to this question: What do I wish people knew about life with diabetes?

My answer to this question changes depending on the kind of day and experiences I’m having with my diabetes. For example, on the occasions that I have a pod failure or my Dexcom loses signal for hours, I wish that people knew life with diabetes is marked by a dependence on technology. When I have several bad low blood sugars in the middle of the night, I wish that people knew life with diabetes means you lose out on a lot of sleep. And the times that it seems like I live at the doctor’s office or spend all my spare time on the phone with insurance companies, I wish that people knew life with diabetes can be a giant (and expensive) time suck.

While there’s obviously a lot that I wish people knew about life with diabetes, I think that I can identify the number one, most important thing that I wish people knew…and that is: life with diabetes is unpredictable. No matter how many years I’ve lived with it, no matter how often I think that I’m doing the right thing in my care for it, it can still prove me wrong all the time. It’s challenging, frustrating, stressful, and draining, and I really wish that people realized how much work it requires to have diabetes. It’s not as simple as counting carbs, injecting insulin, and eating right – it demands mental and physical energy in order to care for it properly, and people living with diabetes don’t ever get a break from that.

I do my best to smile, even when diabetes is at peak unpredictability.

Despite that, I try to smile through it all…because diabetes and its curveballs are a lot easier to handle with a positive mindset. But that doesn’t mean that I don’t wish that people knew how difficult it can be, too.

Happy National Diabetes Awareness Month!

mollyt1d1 Comment

It’s that time of year again – National Diabetes Awareness Month!

Did you know that the blue circle is the universal symbol for diabetes? It represents the unity of the global diabetes community in response to the rising number of people affected by diabetes.

I’m not sure if it’s because I work for a diabetes organization now, but sheesh, this month seems to have arrived more suddenly than it ever has. I’d say it’s caught me off guard, but after literally months of preparing for it as part of my job, it’s really just got me marveling over how fast time flies.

It’s also got me reflecting on how I’ve participated in NDAM in the past. Previously, I’ve done daily postings on my Hugging the Cactus Instagram account and replied to various prompts throughout the four weeks here on the blog.

This year, I’m not so sure I have the bandwidth to dive so deeply into the spirit of the month – but that doesn’t mean I’m mentally checking out of it altogether.

Rather, I’m plan on being more intentional in my approach. Instead of replying to daily prompts (that, over the course of the month, start feeling like homework – in other words, an unenjoyable task), I’d like to post when I feel like I actually have something to say. I don’t want to post filler content, I want to post things that are meaningful and capture my feelings about diabetes, NDAM, and the broader diabetes community.

That’s not a knock on the everyday post inspiration that many members of the DOC take part in – I think it’s wonderful that they have fun with it and use it as a very effective way to raise diabetes awareness throughout the month. It’s just that for me, as someone who’s been part of digital NDAM activities for the better part of a decade (!!!) now, it’s time that I mix up my routine a bit and also step back so I don’t spend all of my mental diabetes energy on NDAM in lieu of my actual diabetes care.

Here’s to deliberate diabetes awareness and care this month!

People with Diabetes are Good at Minimizing

mollyt1d3 Comments

I attended a Massachusetts #insulin4all meeting recently that got me 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.

Over the years, I’ve become excellent at downplaying the impact of diabetes on many aspects of my life.

During this #insulin4all meeting, I was conversing with other chapter members about whether or not we, as individuals, have struggled to afford insulin. And a lot of us confessed that we’ve 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. Despite that, we feel passionately about those who struggle to gain access because we understand how high the stakes are – it’s literally a matter of life or death.

But just because we’re able to (for the most part) afford insulin, that doesn’t mean that we haven’t had to make certain choices that we might not have had to make if we 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 members of my #insulin4all chapter. 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.

Underrepresented Communities and Navigating the System – A Post by Alzahrra Almajid

mollyt1d1 Comment

This was originally published on the T1International blog on June 8, 2021 and it is written by Alzahrra Almajid. I decided to share it on Hugging the Cactus because it is my goal to understand the challenges faced by the BIPOC community and learn what can be done to help. Alzahrra’s experience is a massive wake-up call that we still have a long way to go when it comes to advocating for marginalized groups. Thank you to Alzahrra for sharing her story.

I was diagnosed with type 1 diabetes when I was 8 years old. Having parents who were immigrants from Iraq and people of color was especially hard in navigating diabetes. My mom dealt with a lot of demeaning comments from healthcare providers because she was not taken seriously. In the initial months after diagnosis, her ability to care for me and help manage this new disease was often questioned. It felt like they thought she was too incompetent to understand how diabetes is treated. I remember how disrespected and vulnerable I felt because of the tone doctors spoke to us with.

When I was about eleven years old, I was hospitalized for having a high fever and diabetic keto-acidosis (DKA). On the second day of my stay at the hospital, a nurse asked me if I was purposely not giving myself insulin because it “did not make sense” that my blood sugars were still elevated. I was stunned by how demeaning that comment was. I felt so belittled in that moment that it has stuck with me all these years. Why would I want to feel that way? How could I fake it if the nurses were the ones administering my insulin at the hospital? It turned out I had an infection that was causing the high blood sugars and fever so no, I was not purposely not giving myself insulin. After that day, I started to notice how different my life was compared to other diabetics I met.

Alzahrra noticed her experience with diabetes was very different compared to that of other people with diabetes she has met.

There was not much awareness about type one diabetes in my community so it was difficult for me and my mom to find resources about what treatments were out there. We were not aware of what an insulin pump was or what a continuous glucose monitor (CGM) was. We had no idea that they even existed until I began to research diabetes on my own when I was about eleven years old. Only after I mentioned insulin pumps to my doctor, did we start discussing them as a viable option. When I learned about CGMs later on, I wanted one so bad because I was certain it would help my elevated A1cs. However, after hearing how much it cost, I knew that it was nearly impossible to get it.

Seven years after my diagnosis my brother was also diagnosed with type 1 diabetes which made the already bad financial burden worse. Although all people with diabetes struggle with how expensive diabetes can be, immigrants and people of color often do not have access to quality health insurance (or any access) so they are less likely to benefit from advanced diabetes technology. As I got older I began to understand how difficult it is to navigate a system that makes it harder for people in underrepresented communities to get adequate care.

I knew from early on that I wanted to advocate for marginalized groups. Being a person with type 1 diabetes is already mentally draining and expensive. When you add the challenges of navigating through racial or ethnic disparities, diabetes becomes agonizing. Black, Indigenous, and People of Color (BIPOC) deserve to have representation in the diabetes community and have their concerns addressed. They deserve the same level of care and access to resources that their white counterparts have. I chose to become a Communities of Color Lead for the Illinois #insulin4all Chapters because I want to influence positive change by making sure BIPOC are not left out of the conversation.

Do You Know About Monogenic Diabetes?

mollyt1d1 Comment

This post was originally published on October 28, 2019 here on Hugging the Cactus. I decided to share it again today because I think it’s important to raise awareness that there are more than two types of diabetes. As I reread it, I realized that even someone like me, a person who has diabetes, still has a long way to go when it comes to understanding how each type differs from one another. Read on to learn more…

It was the statistic that impelled me to learn more information:

“Approximately 1 in 50 people with diabetes have monogenic diabetes.”

Mono-what?

I was staring at the giant banner bearing this statistic in the exhibition hall of the Friends for Life Falls Church conference. I read it a few times before I finally walked over to the table at which two women were seated. One of the women was an associate professor at the University of Maryland School of Medicine and a human geneticist. The other woman was a typical T1D for several decades of her life before she received a proper diagnosis of monogenic diabetes. Ever since that revelation rocked her world, she’d gone off insulin and took sulfonylureas (a type of drug that stimulates the pancreas to release insulin) to maintain healthy blood sugar levels.

Just how many types of diabetes are on the spectrum

Naturally, the whole concept was simultaneously foreign and fascinating to me. I wanted to know more.

As I discovered that evening, monogenic diabetes is best explained by its name. “Mono”, of course, meaning “one”, and “genic” meaning “relating to genes”. Therefore, it’s a type of diabetes that is caused by changes in a single gene.

Here are some “fast facts” that I learned about monogenic diabetes:

  • Most cases of it are misdiagnosed as type 1 or type 2 diabetes
  • Proper diagnosis of monogenic diabetes sometimes changes treatment from taking insulin to a pill, or no medications at all
  • There is an emerging clinical spectrum when it comes to genetic testing for diabetes. At the time of this writing, the following situations are when it’s recommended to undergo a genetic test to determine whether an individual has monogenic diabetes:
    • The individual received a diabetes diagnosis within the first 6 months of life
    • The individual’s diabetes does not follow typical characteristics of type 1 or type 2 diabetes – this might mean that the individual is non-obese or has a strong family history of diabetes
    • The individual has a stable fasting blood glucose between 100 and 150 mg/dL
  • From the pamphlet I picked up that featured stories from individuals with monogenic diabetes: “I was 21, taking metformin and aspirin daily and sitting in a type 2 diabetes class with three much older participants. Despite dropping my BMI from 26 to 23 my A1c had risen to 6.4%, not a high number, but certainly one worth watching. I knew of no one else in my family with diabetes. Eventually I did get that dreaded diagnosis, and because it didn’t seem to be type 1, they said it was type 2. Fast forward 2 years and my sister now had ‘GDM,’ (gestational diabetes mellitus) twice, my dad finally admitted to having ‘borderline sugars’ since he was in college, and I got my genetic results back saying I had GCK-MODY (GCK being a gene that can have a variant that triggers monogenic diabetes, MODY being maturity onset diabetes of the young). It changed everything: gone were the pills, gone was the restrictive diet and exercise plan, and when my son was born with high blood sugars, we did nothing, because he was like me, and there is nothing that needed doing.”

Now, if YOU are like ME, all of that might read like some mumbo-jumbo. It took a few weeks of me reflecting on it to decide whether I should even write this post, because I feared that it might cause some people to be paranoid about whether or not they were misdiagnosed with their diabetes (I admit that I was worried about that for myself in the days after learning about monogenic diabetes).

But the big takeaway here that I thought should be captured in a blog post is that it’s important for patients to advocate for themselves when things just don’t add up. There were a few more stories from individuals with monogenic diabetes in the pamphlet I got, and there was a recurring theme in all of them: Doctors kept telling these patients that their diabetes was atypical, but it wasn’t until these patients sought genetic counseling that they began to understand why.

It goes back to what I said at the beginning of this blog post: I find this variant of diabetes to be intriguing. It makes me wonder whether we should continue to define diabetes in such a black-and-white manner (either you have type 1 or type 2). I’m curious if diabetes is more of a spectrum of diseases that present similar symptoms, but require different levels of treatment and management. It’s certainly interesting food for thought, and considering that diabetes continues to be a semi-mystifying condition to many researchers and doctors, it won’t surprise me if future studies eventually uncover more types of diabetes.

Anyways, enough of my musings on genetic testing and speculations on how many types of diabetes are really out there. If you’d like to know more about monogenic diabetes, I was guided to several different resources. Check them out below: