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.
I saw a Facebook post from a parent celebrating the delivery of their child’s insulin pump and asking if Lantus would still be required once the transition to an insulin pump was complete. Of my many reactions to this, chief among them was confusion. Wasn’t it common knowledge that insulin pumps deliver basal and bolus? Isn’t this something that should be explained by a medical professional prior to filling out the paperwork and going down that path? If you’re sharing these sentiments on Facebook, shouldn’t you have learned this through DOC osmosis (DOCmosis?)? Wouldn’t you want to do as much research as possible before making a significant emotional and financial commitment to your child’s diabetes care?
But maybe that fact isn’t common knowledge. Maybe their endocrinologist didn’t take the time to explain the intricacies of pumping insulin. Maybe this is your chance to ask questions before things get real. Maybe I shouldn’t be so quick to judge.
Maybe I’m part of a hyper-connected portion of the diabetes community that seeks this information, that lives on the cutting edge of technology and discussion. Maybe I’m the anomaly, and the people who could use a little extra care and exposition shouldn’t be treated with the condescension that initially flashed through my brain.
It is reasonable to believe Diabetes Awareness is bigger than a diabetes awareness “month”, right? Living this disease day in and day out for over 12 years speaks more than an arbitrary allotment in a calendar. Sometimes speaking with one collective voice makes a difference (like #DOCasksFDA), but individual stories, whenever and wherever they are told are just as impactful.
Also, your diabetes (advocacy) may vary.
To that end, please read Dayle’s post about her perspective on Diabetes Awareness Month. It’s pretty great.
In light of some of the conversation happening on and around My Diabetes Secret, Cherise decided to use the platform she built to address some of the topics presented without giving an opportunity for the negativity to invade the weekly tweetchat.
One afternoon a car pulled up next to me and the driver rolled down his window gesturing to get my attention. He was holding up a small electronic device that turned out to be a Medtronic insulin pump. He wanted to say hello after seeing my license plate.
I had a lot of thoughts about this comment. I asked Twitter for feedback and got some good responses there. I also shared this on Facebook and got some good feedback there as well. I felt like writing more, but then Dayle and Kerri said all I wanted to say. So you should just read what they wrote.
Finally, I would urge anyone blogging for recognition to consider if a blog is really the right outlet for their goals/needs. Blogging is a form of sharing what it is you want to say. It’s not necessarily a platform for making people pay attention. That’s their choice. If your words or your way of changing the world resonates with other people and is valuable to them, they will listen. And that’s what it should be about – not conferences or freebies.
Defining the DOC: Why Do We Blog? – Imperfect Pancreas
I started this site because I wanted to find some kindred spirits. And that’s the reason I continue to write, and to try and connect. It keeps the loneliness of chronic illness at bay and makes doing this diabetes maintenance thing easier. Even though so many healthcare professionals think that my A1C is the most important marker of my success as a person with diabetes, I think my happiness is, and connecting with my PWD peers keeps me happy.
You Are HERE. – Six Until Me
I attended Stanford Medicine X this weekend, a conference billed as the intersection of medicine and emerging technologies. Because the conference took up so much of my time, I didn’t have an opportunity to record a traditional podcast. Instead, I asked ePatient scholars to leave a brief comment on their experience. With a little editing magic, here you go. Enjoy!
For more information about Medicine X, visit medicinex.stanford.edu.
Special thanks to everyone who called in:
On a notecard briefly answer one of these questions: what uses up your energy (spoons) the most; how do you most like to expend your energy (spoons)?
If you’re not familiar with the Spoon Theory, I encourage you to read this post from butyoudontlooksick.com. It’s well worth the read. But for the sake of this post, I’ll briefly summarize this whole spoon business.
Essentially, spoons are an arbitrary measurement of energy. “Healthy” people have unlimited spoons to use during the day, but people dealing with chronic pain have a limited number of spoons. As a result, seemingly ordinary tasks like taking a shower or going to the grocery store are weighed against the amount of energy, or spoons, required. Some days you have more spoons at the ready, and can get more done. Other days, you barely have enough spoons to get out of bed. If you ever see #spoonie included on a tweet, now you know what’s going on.
In the grand scheme of things, the Spoon Theory can apply to anyone, to any patient as a way to convey the struggles that come with getting by day to day. With that understanding comes the collaboration at Medicine X. Attendees decorated spoons in the image of the thing that drains their spoons on a daily basis. What consumes you as a patient advocate? What keeps you up at night as a patient? What worries you the most as a caregiver? If you’re honest with yourself, these are incredibly intense questions that can cost a number of spoons to just contemplate.
My spoon was decorated in the spirit of My Diabetes Secret.