T1D and Trolls (Literal and Figurative)

Let’s talk about trolls.

No, not the cute ones from the 90s with the gems stuck in their bellybuttons and wild, vibrant hair.

I’m talking about two specific types: Internet trolls and in-real-life (IRL) trolls.

They’re not my favorite kind of people, I’m betting you’re not a fan of them, either.

This is what T1D trolls look like in my (admittedly strange) imagination.

I can’t tell you how many times trolls have made their presence known on my Instagram posts. It always goes a little something like this: I post a photo to my account and within 10 minutes, I’ve got some sort of comment on it that goes a little something like this (the following is an actual comment I got last week):

Just wanted to let you know that truly what people are posting about DIABETESTYPE1 cure is true. I write one of the doctors and got herbal medicine from him and truly I’m cured from DIABETESTYPE1. It’s real. Message the doc @herbalist.ebho

There are so many things obviously wrong with this comment that I almost don’t want to deign to explain it, but let’s go over them real quick. 1) Diabetes can’t be cured from freakin’ herbs. 2) No matter how many times someone puts “truly” into a comment, it doesn’t make it TRUE! 3) Why on earth does this person think I’d want to seek help from some random Instagram doctor that probably isn’t even a real doctor? And 4) Obviously, this person – or bot, because I’m sure it’s a bot account – is simply plugging type 1 diabetes into this comment. I can only imagine how many other accounts it trolls that focus on various other chronic conditions…

I deal with most of these comments by deleting and/or reporting them immediately, but this time, I decided to respond to the claims that some generic herbs could cure my diabetes. This is what I said:

“Oh yeah? Is it? Wow I can’t believe I never thought to message some random person to get cured from T1D! Thanks for your completely inaccurate message and typos, have a nice life! 🙂

And of course, I never got a reply…because that’s how trolls operate.

But what to do when trolls come creepin’ into real life?

You know, the people who tell you that their distant relative cured their diabetes by consuming cinnamon? Or the people who assume that you caused your diabetes by eating too much sugar?

I wish there was a delete/report option for those comments, but instead, I try to turn them into educational opportunities. My initial approach is always gentle when I explain that these myths are not only incorrect, but they increase the stigma and misunderstanding of type 1 diabetes. More often than not, trolls turn into apologetic students who walk away with the facts…but every now and then, you encounter a stubborn one who just doesn’t seem to get it.

As frustrating as that can be, it’s okay. Trolls are gonna troll and you can’t always slow their roll (ugh, I know that was lame, please forgive me). So even though I feel like I’m going to hit the roof if I see one more stupid troll comment on my IG posts or encounter one other troll spewing diabetes myths, I can take solace in knowing that I can take back control of the comments by explaining why they’re wrong or (more satisfyingly) removing them altogether.

The Comparison Culture and How I Tune It Out

We all know that social media can be…damaging.

Scroll through Facebook, Instagram, or any other social network and 99% of what you see is the idea of “perfection”: Beautifully dressed and made-up individuals showcasing their gorgeous homes or families or possessions. Usually, some sort of caption will accompany the post and it might say something like “so blessed to do life with my dream partner” or “we just bought our first home, can’t wait to fill it with joyous memories” or some other gushing, effusive language that is followed by a series of exclamation points and emojis.

There’s nothing wrong with this…except for the fact that, obviously, people’s lives aren’t as “perfect” as they seem.

Life is messy, but we don’t get to see that side for many people on social media.

This is true not just about life events, but something as specific as life with diabetes.

I think that our community has gotten a lot better about it, but I used to see so many posts that showed “perfect” blood sugar graphs and “perfect” A1c readings.

And I used to obsess over these posts.

I’d wonder why I wasn’t achieving the same levels of success as these other individuals. I’d convince myself there was something wrong with me, and that I’d never have blood sugar graphs or A1c levels that were “good enough” to share online.

Between diabetes perfectionism and real-life perfectionism (Why aren’t I married yet? When will it be my turn to start a family? What’s wrong with me that I haven’t met all the other adult goals that so many of my friends have met?), I was starting to drive myself insane.

Social media was breeding a culture of comparison for me.

I couldn’t log onto an account without immediately comparing myself to the images I saw and the stories they told.

It’s taken time, and I’m not always good about it, but I’m learning to tune out the noise on social media and how to stop comparing myself so much to others.

So how did I start to unsubscribe to that culture of comparison?

For starters, I came to terms with the fact that I didn’t want to leave social media altogether. I like how it keeps me connected with family and friends on top of connecting me with individuals all around the world. I like how it functions as a support system when I need to consult my diabetes online community for wisdom and guidance.

But I knew that I needed to take a step back. So I started slowly and gradually: I removed the Twitter and Facebook apps from my phone, telling myself that if I really wanted to check the feeds for either, I could do so using my Internet browser. I also spent less and less time scrolling, a habit that was addicting to me because I wanted to see as much content as possible, but also one that I recognized as damaging because more content meant more comparisons to others.

The most important thing that I did, though (and continue to try to do) is repeat a few mantras to myself:

This is just one page of this person’s story.

You don’t know the whole picture.

You don’t want to be anyone other than yourself because you truly do love the people and things in your own life.

It might sound silly, but reminding myself that social media is designed to show off the “best” parts of our lives really did help me come to terms with the fact that I needed to stop comparing myself to everyone. Just like I have plenty of bad things that happen in my life, I have a hell of a lot more good, and just because I don’t choose to showcase everything on my feed doesn’t mitigate the good.

And one last thing that I’m trying to do? I’m simply trying to be happy for others who revel in their successes and choose to share them online. I’m also trying to pay closer attention to those who are brave enough to showcase their failures online, diabetes-related or not. In fact, it’s not uncommon for me to open up my Instagram app, scroll through my feed, and see the most “perfect”, straight-lined Dexcom graph followed by an “imperfect” topsy-turvy Dexcom graph. I’m training myself to react to the former graph not by comparing myself, but by feeling good for the person who posted it. And in terms of the latter graph, I also don’t want to compare myself to it (I’m not proud of it, but I’ve taken a look at “bad” graphs before and said OMG, my numbers are sooo much better), but instead offer words of encouragement or commiseration – because we’ve all been there.

The comparison culture is toxic. It’s taken time for me to realize just how much it was affecting me, but now that I have, I’m glad because removing myself from it will help enrich the relationships I have online and in real life. When it comes to diabetes specifically, it’s difficult enough managing my own, and that much harder when I compare how I take care of it to how other people with diabetes live their lives. Learning to appreciate our diabetes differences instead of stressing over them makes it so much easier to support and uplift one another when we need it most.

TTFN, Twitter

The title of this post really should be “Sorry Twitter but I haven’t been an active user in about two and half months for some specific reasons I’m about to highlight here, but hopefully I’ll come back to you later when things settle down,” but that’s just not very catchy, is it?

Anyways…

The reason why I’m saying ta-ta for now, Twitter, is that it’s become a really tough space to dwell in – or even pop in for a quick visit – throughout this pandemic.

It’s nothing that any account that I follow did or tweeted specifically…it’s just an amalgamation of everything that appears on the site these days. Between the news alerts and downright depressing tweets showing up left and right on my feed, it’s taken a huge hit on my mental health.

TTFN
I’ll return to Twitter full-time…eventually.

It’s a shame because for a long while, Twitter was kind of my go-to in terms of connecting with the diabetes community. I participated in weekly diabetes social media advocacy chats that were a lot of fun and a great way to communicate with fellow T1Ds near and far. But as Twitter grew more and more negative for me, I found myself gravitating more towards Instagram, where things are admittedly a little too shiny/happy/beautiful/perfect all the time. Instagram doesn’t quite fill the void that Twitter did for me in terms of linking up with my T1D community, but it’s something steady I can rely on for now, and with the added benefit of introducing me to other T1Ds who might not be on Twitter.

I’ll end this post by saying that I doubt I’m the only one who feels this way about one or more types of social media during the pandemic. Actually, I know FOR SURE that I’m not the only one who has felt emotionally drained by logging into different platforms and seeing just the one post that is enough to sap you of all positive, happy feelings. And you know what my advice would be to anyone who has felt the same way as me? Recognize it by avoiding those platforms for as long as you need to. I deactivated my Facebook profile for a couple of different weeks so far this year and my mental health absolutely benefited from me doing so. I don’t tap on the Twitter app on my phone lately and I know I’m saving myself from a ton of anxiety and emotional turmoil.

Just like the world has adapted to this “new normal”, it’s all about being pliable enough to see what does and doesn’t work for your mental heath right now, and then identifying alternative ways you can support it.

I Don’t Care Why I Have Diabetes

I saw a post on Instagram recently that infuriated me (I hope you can get a sense of the vitriol I’m about to spew out).

An Instagram user (who shall remain nameless because it’s not cool to put people on blast) was exploring the reasons why they thought they developed diabetes in a series of Insta stories. Several questions were asked:

Was it because of an sedentary lifestyle?

Did it have something to do with being breastfed versus bottle-fed?

Does it have to do with diet?

Was it because of exposure to a certain set of germs?

Did it have something to do with a family history of diabetes?

And the list goes on…and on.

Why did it make me angry?

It’s because, well, personally, I don’t care WHY I have diabetes. I don’t think that exploring the reason(s) why I have it is a healthy way to spend my time.

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*Shrug emoji* I just think there are more important conversations to be had when it comes to life with diabetes.

All I know is that my pancreas doesn’t produce insulin – rather than trying to narrow down the reason why that is, I’d much rather put that energy into taking the best possible care of my diabetes.

Am I crazy? Doesn’t that make sense? It’s just that wondering about the why won’t do a damn thing to change the fact that I have diabetes.

I don’t want to make anyone feel badly if they’ve spent a lot of time thinking about the “why” – I’m sure that when I was younger, I asked myself that question a lot – but I’m merely just trying to change the direction and the focus of the conversation.

Let’s not talk about why – let’s talk about how.

How we can live incredible, full lives with diabetes.

How fortunate we are to have access to tools and technology that help us manage it.

How, despite diabetes sucking a lot of the time, it’s actually brought about a lot of positive change and influence in many peoples’ lives.

Now that’s the kind of productive discussions I’d like to see on social media…not the ones that are all doom, gloom, and pure speculation.

And the Nominee is…Me?!

Friends, I am pleased to share that I have been nominated for a WEGO Health Award. My blogging for Hugging the Cactus has qualified me to be a Patient Leader nominee for the “Best Kept Secret” award, which is very exciting to me! What’s more, if I advance to the finals round, I may be able to win a trip to Las Vegas for the HLTH conference in October. This would provide me the opportunity to be around other Patient Leaders who, I’m confident, I could learn so much from, as well as the rare chance to attend a health-focused conference based on merit rather than cost.

What exactly are the WEGO Health Awards? They were created to recognize and honor those who strive to make a difference in the online health community. In the past few days, I’ve scrolled through the growing list of nominees who are advocates for all sorts of conditions, from anemia to ulcerative colitis. It’s quite eye-opening to see just how many health topics inspire individuals to spread awareness via social media, blogs, podcasts, YouTube channels, and more. And it truly is an honor to be listed among these incredibly inspiring nominees.

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Well, this is just plain cool.

If you feel that I deserve to move on to the semi-finalist round, please follow this link to endorse my nomination. By clicking the link, you can view the other nominees and their profiles, which I strongly encourage so you can find out for yourself the sheer volume of skilled storytellers out there. Plus, you never know, you might just discover someone who you can relate to or who inspires you. After all, in a world of chronic conditions that can feel so isolating, isn’t it always a comfort to find out that you’re not alone?

 

Supporting T1D Students with my #SensorSelfie

I’m taking a departure from a “traditional” blog post today to tell you, my dear readers, that you should consider celebrating a special holiday with me today: National Selfie Day! Before you roll your eyes at the mere idea of that, please keep reading to learn how participating will help support students with diabetes.

Dexcom has partnered with a nonprofit that is very important to me – The College Diabetes Network (CDN) – to help put some focus on the diabetes community and raise money. They’ve created the #SensorSelfie social media campaign to encourage people with diabetes to take photos of themselves proudly donning their Dexcom sensors.

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Here’s my #SensorSelfie, which wouldn’t be complete without my cactus shirt.

But what exactly do you need to do in order to take part in the campaign? There’s four simple steps to follow today, June 21st:

  1. Take a picture showing off your Dexcom sensor
  2. Post the photo to your Facebook and Instagram pages
  3. Use the hashtag #SensorSelfie and tag @Dexcom
  4. Tell ALLLLLL your diabuddies to do the same

For every post that uses #SensorSelfie today, Dexcom will donate $1 to CDN. Can you imagine how much money could be raised if you got all the T1Ds you know to participate?

If you’re looking for some more information on this social media campaign, click this link. Otherwise, what are you waiting for? Get to snapping, posting, and tagging!

No More Fingerpricks Campaign

Diabetes Awareness Month may have only started a few days ago, but boy, has it been jam-packed with advocacy and awareness efforts so far! In fact, I think this is the most active year yet for most social media platforms. I’ve seen tons of different campaigns, hashtags, and posts that were all created especially for this month, and it’s absolutely wonderful to see such inspired content as well as high participation rates.

And I hope to keep the ball rolling on this! That’s why I’m sharing my #NoMoreFingerpricks post today. This campaign was launched by Dexcom and Beyond Type 1. Participants are encouraged to take a picture or video wearing the foam finger from Dexcom, or to draw an “X” on an actual finger (if they don’t have a foam finger). For every photo or video posted on Facebook/Instagram with an @Dexcom and #NoMoreFingerpricks, Dexcom will donate $1 to Beyond Type 1.

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Here’s my #NoMoreFingerpricks campaign photo! And yes, I deliberately wore blue – the color of diabetes awareness.

Yup, it’s that easy to do! And it’s exactly the kind of social media campaign that can catch on quickly. Recruit your family and friends to take photos and get posting! And be sure to teach them a couple of diabetes facts and what the whole #NoMoreFingerpricks hashtag is all about. For instance, you could mention that:

  • 34% of people with T1D know nothing or little about CGM
  • 80% of people with T1D still prick their fingers more than 3 times a day
  • 96% of CGM users would recommend CGM

You could even direct inquiring minds to visit nomorefingerpricks.com to learn more about continuous glucose monitoring technology and this campaign.

So…what are you waiting for?! Draw an “X” or grab that foam finger and post your photo to educate, advocate, and celebrate living beyond!

Any Pods to Spare?

Not too long ago, the following message appeared in the inbox of one of my social media platforms:

I’m so sorry to bother with something like this. I down to my last pod. And.. currently I’m having insurance issues.. I was wondering if there were any pods you could spare? I’m trying to search around. Or if you know anyone that does have extras? Or samples? I would hate hate to return to multiple daily injections.. I know u understand that. If not it’s ok. Sorry to bother. I don’t know where else to try apart from everything else I’ve tried

When I read it the first time, my heart immediately sank. The message was fraught with desperation, as evidenced by the typos and fragmented sentences. My gut reaction was to reach out to this person and let them know that everything would be fine, that there had to be an option out there that would help them.

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No pods to spare.

My next reaction, though, was pure skepticism. I’m not proud to admit that, but here are the facts that I was facing:

  1. I did not know this person. I tried to look at their profile to see if I could learn more about them, only to discover that it was private. I couldn’t see any of their information, other than a minute profile picture and numbers regarding their followers/activity.
  2. This person said they might be forced to go back to MDI. Personally speaking, if I ran out of pods and had to go back to shots, I wouldn’t like it – but if it was my only option, then of course I’d do it. I did it for something like 17 years before ever trying a pump. It sounded like this person wouldn’t want to do it, but…
  3. Most importantly, I do not have any pods to spare. I’m not sure why this individual thought that I did. It seemed like they’ve been asking as many people as possible on social media for pods, which makes me believe that they’re exploring the #omnipod or #podder hashtags. Regardless, I rely on regular shipments (every three months) from Insulet in order to maintain the bare minimum of pods that I need. And I can’t exactly give up “spare pods” that I don’t even have.

As horribly as I felt for this person, I had to take into consideration the facts that were in front of me, as well as the unfortunate truth that you can’t trust everything on the Internet. I told them that they should try to reach out to Insulet for assistance, and that I would be hoping for the best for them. I know that my kind words probably brought little comfort, but it was all that I had to offer to this total stranger.

The whole exchange haunts me. That’s why I want to know…

What would you have done if you were in my shoes?