Today’s blog post is intended to be short, but sweet: I want to take this as an opportunity to say thank you.
Since I published my post last Friday about being “dia-feated”, a dozen or so members of the DOC – and even a couple nonmembers – have reached out to me via social media to share their words of encouragement with me:
“…I enjoy your blog posts and your voice is important to me”
“…your blog reached one person, and that’s enough (for me)”
“I read your blog all the time, and it helps me.”
Each message expressed similar sentiments using different words: Don’t give up. My voice matters to someone.
Again, the intention of that post was never to drive traffic to my blog or messages to my inbox. I was merely trying to express some sentiments that I’d been feeling for a few weeks now. But the fact that so many people DID, in fact, take the time to reach out to me and exchange a few messages with me meant the world. I found each one to be uplifting and truly touching, and if you were one of the individuals who wrote to me, I can’t thank you enough.
It’s funny – but truly wonderful – how kind words from friends and strangers alike can do so much to revitalize your soul and make you see what’s right in front of you: an amazing, supportive community who just gets it.
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.
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.
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.
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.
One Monday per month, I’ll take a trip down memory lane and reflect on how much diabetes technology, education, and stigma has changed over the years. Remember when…
This is a continuation of last month’s Memory Monday, in which I reflected on what it was like to work on a diabetes-oriented community action project when I was a freshman in high school. There were two main components to my project: running a School Walk for Diabetes, and educating a group of middle school students on type one diabetes.
Ugh, the thought of presenting to a group of middle school kids horrifies me now, but I guess I wasn’t so afraid at the time – you know, because I was a cooler, older, more sophisticated 14 year old lecturing the immature 12-year-old children.
*I’ll pause to allow you a moment (or several) to laugh at that mildly ludicrous notion.*
The easiest part of prepping to talk to the students was devising a lesson plan. My project partner and I put together a beautiful slideshow (complete with Comic Sans font, how professional) that we would use in the first half of the presentation. During the second half, I would show the students all of my medical equipment and demonstrate things like priming an insulin pen and testing my blood sugar. We also provided students with examples of healthy snacks for a person with diabetes and when to eat them. The formal presentation would end with us giving students the chance to ask questions.
Sounds pretty neatly put together for just a couple of freshmen, right?
Turns out, it really did go over well with the students! There were a couple technical difficulties (blast those LCD projectors), but my partner and I knew our presentation like the back of our hands, so nothing deterred us from accomplishing the goal of our lesson plan: for the students to have a greater knowledge of diabetes.
We felt like our hard work was worth it when we received completed evaluation cards from the students. We’d asked them to tell us: 1) The best part of our lesson, 2) The worst part, 3) Rate it on a scale of 1-5 (1 being worst; 5 best), and 4) Write one fact about diabetes they learned. Our average rating wound up being 4.2, which made us feel like rock stars! All these years later, I still have some of the best comment cards preserved in a binder about my project:
Personally, I really love how one student thought that diabetes is spelled “diabedes”. And I’m amused by how another student didn’t seem overly crazy about the PowerPoint (it must’ve been that damn Comic Sans font that ruined it).
But joking aside, this whole project still resonates with me ten years later because I think it marked the beginning of my passion for diabetes advocacy. It was one of the first times that I willingly shared my diabetes with others and let a real conversation take place about it with no holds barred.