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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