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.
When I first heard about the t:flex and it’s 480 unit cartridge I initial wondered what value that could have. “It would take me a decent chunk of time to use that much insulin, let alone that much in a 3-day period”, I thought to myself.
Then I remembered that diabetes, and its demands come in all shapes and sizes. And insulin sensitivity is the epitome of “Your Diabetes May Vary“. And that this diabetes thing is bigger than little ol’ me. And the more options people have to manage their diabetes with the goal of leading a happy and healthy life, the better.
I’m going to share a bunch of links in a moment that are all worth clicking on, in order of importance. They all revolve around Take This, a non-profit which “seeks to inform our community about mental health issues, to provide education about mental disorders and mental illness prevention, and to reduce the stigma of mental illness.” Most of the time I share content and projects and initiatives aimed at diabetes, its stigmas, and community-created solutions to the struggles and challenges of living with diabetes, and in a way, this is an extension of that.
The mental health component to diabetes management is often overlooked, ignored, and dismissed. But making the right decisions in the name of diabetes control is unbelievably difficult if you’re not in the right frame of mind.
So, in a way Take This does relate to life with diabetes. It’s another avenue to explore, share, and learn from others who have something to say about mental health.
Take This recently launched its own podcast, you can listen to it here.
And if you want to hear more from Russ Pitts, the co-founder of Take This, he’s been a guest on my podcast, Just Talking, not once, but twice. There’s plenty of talk about Take This in both episodes which should help you get a better idea of Take This‘ mission.
Over the past few months I’ve taken pointed efforts to reduce the time I spend staring at my phone. While social media is great, and ensuring all my emails are marked as read is a worthwhile goal, I wasn’t doing a great job of living in the moment. So I turned off nonessential alerts on my phone. Twitter, Facebook, Instagram – the apps themselves stayed on my phone, but their frequency of use dropped as the number of times my phone updated in the background decreased.
I’m still not sure if that’s enough to get me back in the moment, but I’ve certainly felt detached from the diabetes community as a result of these efforts. Recently I’ve made somewhat public statements that it felt like the community was shrinking or changing, but I wasn’t looking in the right direction for an explanation.
This is the result of my own actions. So now the challenge is to find a way to continue to embrace and engage the diabetes community, but in a healthy way.
This should be interesting.