Why Online Communities Aren’t Always the Best Source of T1D Support

Before I jump into this post, let me make this unequivocally clear: The DOC (Diabetes Online Community) has been an incredible source of support, advice, and education to me ever since I discovered it (roughly seven or eight years ago). This post isn’t necessarily about the DOC; rather, it was inspired by a recent experience I had with a totally different online community. But what I’m about to say here can be applied to just about any kind of virtual support group in existence…

In addition to the DOC, I consider myself a member of a few other online communities. One of them is focused on fitness. (I’m not going to specifically name the group here, mainly because I’d like to maintain its privacy as well as the privacy of its members.)

Anyways, said group was formed to provide members with a place to post about their respective fitness journeys. Members are encouraged to post daily about their workout routines, nutrition plans, and any emotions that might arise as they work toward building a healthy lifestyle. It’s common for members to interact with one another and show support when someone is struggling, as well as applaud victories big and small as they’re met. Unsurprisingly, negativity and criticism aren’t welcome in this group, as it can be detrimental to the goals that each member has for himself/herself.

Thanks for the love!

In keeping with the spirit of the group, I posted a photo a few weeks back of myself (making a grumpy face) after a particularly challenging cardio workout session. In the caption, I wrote: “Excuse my pissed off expression…I had to cut cardio fix short because my blood sugar was getting too low. Only worked out for about 20 minutes this morning. I really wanted the full one cuz I treated myself with food just a tad too much yesterday…but I don’t totally regret it because it reminded me that I just don’t feel good when I snack unnecessarily. I’m always struggling to remember to only eat when I’m hungry or if my blood sugar is low, not because I’m bored or emotional. I know one day I’ll fully accept this and practice it!”

I wasn’t seeking sympathy or anything, I was just being honest with the other members of the group and channeling a bit of my frustration. Regardless, a few people did comment on the post with some reassuring words, like “you’ve got this”, “thank you for sharing”, and “one day at a time”, which I appreciated.

But what I did not appreciate was the comment thread that followed and involved myself and two other group members (my thoughts as I initially responded to this chain are denoted by asterisks):

Group Member #1: Oh no, be careful! Do u usually run low?
Me *Not wanting to dive into a long explanation*: I’m pretty well controlled for the most part, but exercise can make me go low sometimes! 
Group Member #1: do u have diabetes?
Me: yes, type 1 diabetes for 21 years now
Group Member #1: oh wow! Be careful!! Do u carry glucose tabs with you?
Me *Rolling my eyes as I respond, and adding a “haha” to keep it light*: of course! Haha I’ve had T1D for a very long time so managing it is second nature.
Group Member #1: okay good! Just making sure. Sorry, this was the pharmacist in me asking (an annoyingly cute monkey-with-hands-over-eyes emojis PLUS smiley face emoji followed this comment)
Group Member #2: The nurse in me wondered the same. 🙂
Group Member #1, responding to Group Member #2: haha! (followed by a stupid heart emoji)

What exactly is my issue with this thread? It starts with the “be careful”. It was probably an innocuous comment on the poster’s end, but I thought that me telling her that I’ve had diabetes for 21 years might signal that I know a thing or two when it comes to managing it. It also mildly irked me that she was qualifying her comments to me by saying that she was a pharmacist. That’s great and all, but that doesn’t make her an expert by any stretch of the imagination on diabetes…same thing to the girl who also chimed in by saying she was a nurse.

Now, you might be thinking that I’m overreacting to this whole thing – and part of me agrees, I’m sure that both girls just had pure intentions and wanted to offer support in their own ways – but if that’s the case, then this is a perfect example of how things can get misconstrued in an online setting. My interpretation of this thread is that both girls were trying to tell me that their expertise in their respective fields meant that they knew a good bit about diabetes, and rather than come off as supportive, the comments felt like show-offish (like, oh, look at me and how much I know!) and as if they thought I couldn’t take proper care of myself. Again, my interpretation may or may not be true, but it’s fact that we all need to be careful when choosing our words in situations like this. Even better, when something isn’t totally clear, we can choose to say nothing rather than chime in with a comment that might come off wrong or sounds misguided.

With that in mind, I now get why some people say that online support just isn’t for them. Personally, though I appreciate and like being part of online communities, this experience did teach me a lesson about being careful with my interactions in these spaces, and that I should always try to remember…it’s impossible to gauge tone/emotion in the comments section, and coming across as a know-it-all isn’t a good look on anyone.

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The Cactus Corner

It seems like everywhere I go these days, there’s a cactus. (Or more often than not, cacti.) They appear in practically every form: I’ve spotted t-shirts, erasers, mugs, earrings, pool floats, and even stringed lights bearing the barbed plant’s likeness. The popularity spike of the cactus collided, by total coincidence, with the debut of my blog.

I’ve rapidly amassed a small collection of cactus items in the past year and a half, with no signs of slowing down. It’s certainly made it easier to represent my brand at all times, without even really trying. And it’s caused my family and friends to associate cacti with me – it always makes me smile when someone spots a cactus in their travels and lets me know that it made them think of me.

But even better, the cactus has spurned creativity in some of my friends who have been especially supportive of my blog and its mission since its incarnation.

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I have some incredibly talented friends.

Hence, The Cactus Corner – a little stretch of shelf space devoted to some of the cacti creations that my friends have made for me in honor of my life with diabetes as documented through this blog. There’s a cheerful, polka-dot-potted cactus that my friend hand-stitched in one section, and a painting of a blooming cactus set against a lovely pink background. Also pictured is a painfully cute pin that I’ve attached to my meter case – a portable cactus that I carry everywhere with me, along with all my diabetes supplies, as a reminder of my blog and of the diabetes obstacles I’ve overcome over the years.

The Cactus Corner is small and humble, but it represents so much to me. It is tangible evidence of the friendships I’ve been blessed with in life. It’s also symbolic of how I’ve chosen to embrace diabetes – pricks and all – for what it is.

So as my Cactus Corner continues to grow and thrive, I will, too.

How to React When a Loved One With Diabetes is Struggling

If you have a partner/spouse, relative, or friend with type one diabetes, it can be difficult to know how to best support that person when they’re experiencing struggles related to diabetes. You might try to offer a shoulder for your loved one to lean on, but that might not always work. Your loved one might push you away or continue to internalize their issues. It can create turbulence in your relationship with one another, and it’s frustrating all around.

So what can you do?

We Have 10,000 Followers!

As someone who both has T1D and loves others with T1D (my mom, my aunt, many good friends), I believe that the best way to react is to just listen. Whenever I’ve faced serious struggles or emotional turmoil due to diabetes, nothing has helped me quite like a person who spares time for me to listen to me. Whether I just need to spew out an angry diatribe (LOL at the pun), cry about my problems, talk through issues, or seek advice, it’s worked wonders on me to know that I have individuals in my life who are willing to listen to me. Let me emphasize the listen part once again – listen, not tell me that I’m right or wrong, or offer advice (unless I specifically ask for it).

I get it; sometimes, it’s easier said than done to just listen. A few people I know are so determined to help me fix the problem that they can’t help but react emotionally along with me when I’m dealing with diabetes drama. But trust me, that usually heightens (rather than alleviates) the tension.

It’s all about teamwork. Give and take is involved. Often, enormous amounts of patience are required. Sometimes, it takes awhile for the struggles to subside. But one thing that is certain is that your loved one with diabetes will always thank you and be grateful for your support in their time of need. It’ll strengthen your relationship as well as function as proof that diabetes can’t break your bond, no matter how hard it might try.

 

The DOC: The 24/7 Support System I Never Knew that I Needed

I’ve lauded the DOC (Diabetes Online Community) time and time again for connecting me with individuals globally who are also affected by type one diabetes. And I don’t foresee an end to my desire to express gratitude for this amazing community, because over and over, members of it continue to blow me away with their words of encouragement and gestures of friendship.

My latest wave of gratefulness was spurred when I arrived home from work on Monday to a cheerful, Tiffany-blue envelope waiting patiently for me to open it. It was a delightful little package from my friend Sarah, who I “met” via Instagram over the summer. Besides diabetes, we share common interests in fitness, wellness, our pet dogs, and bright colors, among other things.

Sarah went out of her way to mail me a few goodies (shown in the picture), including a cute T1D key chain and an adorable cactus card with a message of support written inside. I was incredibly, pleasantly surprised by all of it. It wasn’t about the material items for me (though they are totally my style, and I can’t wait to make use of them). It was more so how she took the time to put it all together for me, cleverly incorporating some of the things that introduced us to one another in the first place, that really blew me away.

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Sweet trinkets from a sweet friend!

It got me thinking about the larger diabetes community I’ve met and harvested friendships with in the last several years. And as hard as it is for me to properly describe the level of richness, knowledge, and support that those friendships have given to me, it’s beyond easy for me to say that I am infinitely thankful for all of them, and I hope that in return, I am able to offer at least a fraction of the same to others.

With all that said, it’s even more mind-blowing to me that I resisted this community for such a long time. For the first 14 years or so that I lived with diabetes, I rejected the notion that I needed peer support to help me manage the emotional and physical aspects of diabetes. I turned down offers to go to diabetes camp. I didn’t interact with the only two other diabetics in my school’s district because I feared social isolation. In some situations, I even pretended that I didn’t have diabetes, because my yearning to be normal like everyone else overpowered my need to make my health a priority.

That’s why I don’t think it’s a coincidence that things started to turn around when I met other T1Ds my age. That marked the point where I could have open, honest conversations with others who were going through similar life events at the same time as me, without the judgments or criticisms I may have had to endure if I had those same conversations with family or doctors. While I know that I need to give myself and my personal growth some credit for improving how I manage my diabetes, I would be remiss if I did not also attribute some of that credit to the members of the DOC who have made meaningful contributions to my life and my outlook on it.

It’s funny that something special in the mail made me contemplate all of this, but Sarah’s thoughtful package to me is a tangible representation of how connections within the DOC have changed me for the better.

Thank you, Sarah, and another big thank you to those of you in the DOC that I have met, as well as those I have yet to meet.

Memory Monday: That Time I was Bullied for Having T1D

One Monday per month, I’ll take a trip down memory lane and reflect on how much my diabetes thoughts, feelings, and experiences have unfolded over the years. Today, I remember…

…when my alleged “best friend” picked on me for having diabetes. It sucked.

Let me recount this tale by saying first that this was many years ago – I think it was in third or fourth grade. Since my grade school days, I’ve made much smarter choices when it comes to my social circles.

But back then, I didn’t really know any better. I just wanted to be friendly with everyone.

I digress…

Back in elementary school, we were awarded fitness “medals” for being able to complete a series of exercises in physical education. These medals were really just flimsy little patches that you could sew on to a backpack, but nevertheless, I wanted one very badly. But no matter how hard I tried in gym, I just couldn’t complete as many reps as it took to earn a medal. I was always just shy of the threshold, much to my frustration.

I’ll never forget when my “best friend” told me that there was a very obvious reason as to why I couldn’t, and would never, earn a medal:

It’s because she has diabetes, she can’t do anything right with that!

In that moment in time, I was too dumbstruck by the stupidity of that comment to tell her that she was wrong. I was also incredibly hurt by her words, and they haunted me for many years after they were so callously said to my face.

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My Lilly medal means more to me now than a stupid grade-school medal ever could.

Now, as an adult reflecting on it, I wish I had told her that diabetes could never stop me from doing anything. I wish I told her that she was in the wrong for saying what she said, and I wish that she could see all that I’ve accomplished over the years in spite of my diabetes.

But most of all? I wish I could thank her for that comment – because as mean as it was, it gave me something to think about on the days when I just want to quit because of diabetes. Her words serve as a reminder to me that I can and will succeed at anything I set my mind to, diabetes and all.

T1D and Emotional Support: The Best Support Comes from my Online Community

Yesterday, I admitted something via Twitter:

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Without going into a ton of detail, I’ve had higher-than-normal blood sugars in the past week or two. Nothing super alarming, but enough for me to notice and feel discouraged about this new pattern. And enough for me to feel that I needed to tell someone about it.

But why post this on Twitter, and not tell my family or my friends? I chose Twitter as my outlet because my network there is composed primarily of people with diabetes. They’re the ones who completely understand where I’m coming from. That’s not to discount my family and friends – they know me and my diabetes well, and I know that I could reach out to any one of them whenever I need to – but truthfully, sometimes it’s easier to talk to people who know exactly what I’m experiencing. I don’t have to explain myself as much, and it’s understood immediately that my feelings are valid and warranted. And just the acknowledgment, the “hey, I’ve been there, too” or the “I know what that’s like”, is all I really need.

I was blown away by the responses I received on Twitter. Many people took the time to reply to me, and I continued to receive tweets for hours throughout the day. Each message encouraged me and motivated me, and some even applauded me for admitting my troubles to my Twitter network. I also received a couple of really great GIFs; in particular, the beaming cactus put a big old grin on my face.

So thank you, DOC, for being there for me when I needed to be lifted up. I’ll keep you all updated as I try to figure out what’s going on, but for now, thank you for reinvigorating me and for caring. No words can truly express my gratitude, but damn, this community is incredible.

I’m reminding myself, and you, that I’ve got this – and you do, too.

I’m Right, You’re Wrong: Debating with T1D

I found the diabetes online community (DOC) a few years ago – or perhaps it found me – and to this day, I’m incredibly grateful for it. It’s introduced me to new friends and it’s always been a reliable source of information. Whether I’m lamenting a low blood sugar at 2 A.M. or asking if anyone has advice on a pod problem at 2 P.M., odds are I’ll have someone reaching out to me within minutes in some form or fashion. That kind of on-the-fly support is invaluable.

That being said…the DOC is not always a perfect safe haven.

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When it comes to diabetes, there shouldn’t be a “right” or a “wrong” side. T1D is hard enough.

In fact, if there was one thing I could change about it, it would be to make it a judgment-free space: because all too often, people are unfairly judged for how they choose to manage their own diabetes.

I’m not saying that people aren’t entitled to opinions. Of course they are! But what happened to respectfully disagreeing with people?

I’ve seen situations like the following across different social media platforms:

  • People getting attacked for following low/medium/high-carb diets
  • People getting criticized for sharing “good” and “bad” blood sugars/A1cs
  • People getting judged for dealing with diabetes burnout – as well as people getting judged for sharing their diabetes triumphs
  • People getting discouraged from posting only the pretty parts of diabetes

We can’t keep doing this to each other. Just because a certain diet or T1D management strategy works out well for one person, doesn’t mean that it will work the same for another. That’s because diabetes is not a one-size-fits-all condition.

And we shouldn’t be judging one another for our differences. In fact, our differences can teach us so much more than our similarities can. We should celebrate one another for living with diabetes: doing the best we can, day after day, whether it yields “ideal” or “not ideal” results. Because it’s damn difficult to manage, and anyone who says otherwise is being judgmental.

We can learn and grow from one another, which is pretty powerful, as long as we refrain from this “I’m right, you’re wrong” attitude.