I don’t have the courage to tell anyone I have this horrible disease.
Shared on My Diabetes Secret
Seeing stuff like this come through on My Diabetes Secret reminds me that we aren’t doing enough for the diabetes community. I don’t know exactly who “we” are, and I don’t know what can be done to help people like this, but I know the status quo is not sufficient.
How might we create a more accepting culture for people living with a chronic disease?
How might we empower people to feel they are in control of narrative surrounding their disease?
How might we better battle stigmas that create the shame that hides public disclosure of a chronic condition?
Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? (This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.)
Diabetes Blog Week – May 12, 2015
It’s funny, despite having presences on a variety of social media platforms, my enthusiasm for sharing aspects of my diabetes life waxes and wanes. With efforts like #dayofdiabetes, sharing is paramount. But I can just as easily go a week or two without posting a Dexcom picture on Instagram or mentioning diabetes on Twitter. Outside of Dayle’s own diabetes experiences, I don’t necessarily consider anything off limits for the sake of keeping a piece of me private. Sometimes I simply don’t feel like sharing anything because I don’t feel like sharing anything. Boring, right?
In the UK, there was a diabetes blog theme of “I can…” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life?
Diabetes Blog Week – May 11, 2015
My initial response to this prompt is quite predictable, especially considering my upcoming nuptials. The thing is, finding the person I will spend the rest of my life with isn’t something I’ve accomplished despite diabetes, it’s because of diabetes.
For some reason, there’s been a lot of activity on My Diabetes Secret over the past few days. Actually, I should specify, there’s been a lot more activity than normal on My Diabetes Secret.
I keep an eye on the likes and reblogs to make sure I’m doing everything I can to ensure this blog reaches the people who need it most. Yet, for reasons I can’t decipher, the number of new followers has increased at a significant rate. I wish I knew what made this stuff “stick” with the diabetes community on Tumblr. I wish I knew what drives people to share, reblog, engage, and interact. I wish I could figure out why this entire experiment actually, kinda works.
My hope is that every single reblog represents a “me too”, and every single like represents a “I hear ya”. My Diabetes Secret isn’t a place to try and one-up the struggles of others, but the shared emotions are clearly connecting.
I feel safe sharing this with you, because the people that need to hear this aren’t reading this blog.
My hope, coming out of my AADE presentation this summer, is that we can get those numbers to change.
To that end, I need your help.
“Having diabetes can be very stressful, and it can bring out all kinds of emotions. Denial, depression, and anger are feelings many people with diabetes have experienced. When you’re first diagnosed, it’s normal to believe there must be some mistake. it’s also normal to be sad or angry over the lifestyle adjustments it requires. The inability to get beyond these emotions, however, can put your health in danger.”
Of all the things I wish I knew when I was diagnosed, I think this is at the top. I don’t remember ever feeling particularly “down” about my diabetes in the early years. Maybe jumping right back into my classes at Virginia Tech prevented any opportunity to truly contemplate what the future of my life would become as a result of this disease. With so much of my life undetermined, I think I just added this to the list of things I had to consider.
These types of nuggets of advice are always tricky for newly diagnosed. There’s so much information out there, it’s easy to become overwhelmed. If you perform an image search on the word “diabetes”, you’ll get the clichéd injection pictures next to amputations. If you look for non-medical perspectives on diabetes, there’s a whole mess of blogs, and patient communities to discover.
My first piece for Quantified Self was published today. You can read it on Medium.
I started watching Daredevil on Netflix. This show is so good.
Heather Gabel is starting her PhD which will focus on studying the diabetes online community, and is looking for your input on what would be most beneficial for her to study and eventually share with us. Definitely worth checking out.
Tandem Diabetes has decided to not allow current t:slim users to upgrade to their new Dexcom-integrated pump when it hits the market. You can read their justification here. As you can imagine, I wasn’t very enthusiastic.
It’s a bit hyperbolic, but that’s what the Internet is for, right?
And, registration for the 2016 Diabetes UnConference is open. Highly worth considering, especially after hearing what Christel had to say about it on the podcast a few weeks ago.