I have grand plans to categorize and eventually analyze the submissions to My Diabetes Secret and My Chronic Disease Secret based on this grouping of basic emotions. I would love to say things like “this disease experiences more anger than sadness”, or “fear and anger are the most common emotions of people living with that disease”*.
The prospect of categorizing those submissions makes me think about this blog and the range of emotions I’ve shared over the years. I know the early months (and years?) of chronicling life with diabetes was mostly filled with anger. I had a lot of confusion, frustration, and general not-happiness to get out in the open with the hopes of starting to better myself. Somewhere in the middle I found Dayle and emotional content of the blog likely shifted to calmer, more pleasant themes. I suppose that emotional output has largely been the same ever since.
I wonder if the emotional journey of most members of the diabetes online community follow a similar trajectory? So many stories from the newly initiated start with something along the lines of “I thought I was the only one…”, that fear and solitude can fuel all kinds of negative thoughts. But upon discovery of a community of people who “get it” and can empathize with your experiences, isn’t that usually when the flood of emotions begin? Because that’s when all the ugly stuff gets out of the way to make room for new, happy thoughts, right?
The validation that comes from sharing your experiences and hearing “me too” is too powerful to quantify, or qualify. It’s just fantastic. I know it’s impossible to provide that opportunity for everyone living with a chronic disease, but I want to do my part to make that “me too” moment happen for as many people as possible.
At the end of the day you’re alone, nothing’s going to change that. But the truth is we are more alone than them, yes we might have each other (diabetics), but we are alone. No one understands, not family, friends, not even we fully understand. Diabetes is too often overlooked, not understood, and many other things. I would never want nor need anyone’s sympathy, but for once I would like for someone to understand! What it’s like to take insulin, feel a low, a high, or even no what it’s like to sit through a health class that’s directed towards a diseases you have (even though they don’t know what they are talking about). We are all alone, but we are more alone than others. // Shared on My Diabetes Secret
What is courage? I think courage is in the eye of the beholder. As a diabetic I’ve never met nor seen anyone see diabetics as courageous people. I think that’s because we are courageous every day. Not by choice but by faith, so the next time you get judged, remember, we are all COURAGEOUS. // Shared on My Diabetes Secret
If you feel the need to share, My Diabetes Secret will always be here.
The same goes for my peers living with any other chronic disease at My Chronic Disease Secret.
I’d like to thank everyone who participated in #dblogcheck on Tuesday. Seeing all the comments on every blog I visited put a huge smile on my face.
I noticed a few comments about “missing” the day or not being able to get as many posts as intended. That’s okay, folks. The idea behind the day is to rekindle the community building fire and remind everyone out there that you are not alone. We’ve never needed a day for commenting, but rallying people behind a cause (even one as silly as this) makes the whole concept a bit easier to understand and execute.
Of course, taking the time to comment on every single diabetes blog post every single day is not a sustainable effort. There’s too many of us. That’s okay. My hope is that coming out of a self-imposed comment on everything day establishes some sort of routine that results in commenting a little more often than you did the day before.
So often we go through our lives focusing on the negative or simply not recognizing the positive. How often do you make a priority of leaving a positive review of something on Amazon or Yelp? How much more likely are you to leave a review if it’s going to be negative? How much more likely are you to tell Twitter or Facebook about a bad experience you had instead of a good one? I believe that commenting on these blog posts makes everyone feel better. Raising the collective spirit of the diabetes community is a goal all of us should have, regardless of how we achieve it. Considering how easily diabetes can break each of us down as individuals, walking away with any amount of positivity is going to take a group effort.
So thank you to all of you who participated. If you didn’t get to everything on Tuesday, that’s okay. Maybe set a goal to get to all of the posts by the end of the week? Maybe set a new goal to comment on at least one diabetes blog each week day? Maybe it only has to be one comment a week? I’m saying this in part to give each of you an idea as to how you might lift the spirit of the diabetes community, and also because I need to be better about commenting in general, too. I’m not immune to any of the observations I’ve made here. If we all do a little better, great things are possible.
Here’s a cat picture to balance you out.
After recent comments about the ever-changing community, and last night’s #dsma chat about communication, the idea of bringing back #dblogcheck popped up.
For those of you just joining us, #dblogcheck was an idea I had a couple of years ago that, for a single day, encouraged everyone to leave a comment on every diabetes blog post you read. The motivation behind this was not for pageviews or notoriety, but community. So often it feels like we’re standing on our little social media platforms shouting into the void, wondering if anyone is paying attention.
Of course the reality is that the Internet is made up of a diverse range of interactions. From the hyper connected curators, to the on-the-nose news sharers, to the social butterflies that say hi to everyone, to the lurkers who are paying attention but choose not to say much. #dblogcheck is an opportunity for all of us to come up, look around, and embrace the diabetes community.
Image (linked) from giphy.com
So, I’m nominating Tuesday, March 10 as our next #dblogcheck.
I just want someone I can tell how I really feel too, without fear of judgment or abandonment. I want someone who will check in on me, and will say “I know you aren’t doing okay, please tell me what’s wrong”.
I want a friend.
This was shared on My Chronic Disease Secret last week.
Today, Kerri wrote this:
I miss the old school blogging, quite a bit. I miss the small community feel that used to be in play, where people wrote in hopes of connecting instead of being “seen.”
As a result, I told Facebook:
I feel guilty saying ‘what happened to the diabetes community?’ to a community of followers who mostly have or know someone living with diabetes.
It’s important for me to remember that the community is, and will always be there, even if I’ve changed.
There’s been quite a discussion thus far.
All of this sort of ties back into something I wrote a few weeks ago about the sense that I’ve become more detached the diabetes community.
What I think I’m getting at is I’m feeling nostalgic for the way things “used to be” even if the way things are right now are a direct result of the growth the diabetes online community has experienced over the past five to seven years depending on your tenure. As we all grow up, have kids, move, get married, find new priorities, it’s difficult to hold onto everything that was a priority in years past. There are times when this blog feel like a mandatory ritual rather than an exciting routine.
On Monday I asked the Internet why there wasn’t a “My Cancer Secret” similar to My Diabetes Secret.
Yesterday, with some help, I took matters into my own hands with the launch of My Chronic Disease Secret.
I wrote an introductory post, which you can read by clicking on this link. Here’s the punchline.
But diabetes isn’t the only chronic disease impacting lives around the world. Where is My Cancer Secret? Why isn’t there a My Cystic Fibrosis Secret? Shouldn’t there be a My Depression Secret?
Here it is.
My Chronic Disease Secret is building upon what My Diabetes Secret started, offering a safe place for anyone living with or impacted by a chronic disease to share their secret free of shame, of stigma, of judgement.
More will surely follow as this gets off the ground, but I feel good about this one. Given how much of an impact (I believe) My Diabetes Secret has had on the diabetes community, it only seems natural, and fair, to give the rest of the chronic disease community an opportunity to share what they are feeling.
Today I read an article on my iPad from the Wall Street Journal about Dexcom’s foray into Apple’s App Store, specifically an app that will display blood glucose values from their continuous glucose monitor on the soon-to-be released Apple Watch.
While the headline is all about Dexcom, the content of the article shifts somewhat dramatically to the work from the Nightscout community, and how their persistence (hence the #WeAreNotWaiting hashtag), brought the conversation about medical device use, regulatory approval, and FDA’s policies on health-related apps to the table much sooner than anyone anticipated.
After I that article, I read a blog post from Kerri about the Spare a Rose campaign. Given the knowledge that there are children with diabetes around the world without access to insulin, and a mere $5 donation means insulin and test strips for a month for a child in need – reread that first sentence.
Wall Street Journal. iPad. Dexcom. Apple Watch. When you see what kind of options we have, and compare it with the lack of opportunity others experience, the contrast in lives is quite stark.
I’m not asking you to apologize or feel guilty. I’m asking you to help make a difference. Help the Spare a Rose campaign provide insulin and test strips to children with diabetes in need.