Congrats again to the 10 winners of the 2013 DiabetesMine Patient Voices Scholarship Contest who were announced earlier this month! Over the next weeks, we'll be featuring an interview with each winner, delving into the stories behind their entries, and their take on the impact diabetes technology has on all of us PWDs (people with diabetes).
First up is longtime type 1 and fellow D-blogger Scott Strange, who many may know from his blog, Strangely Diabetic. A resident of Leavenworth, Kansas, Scott is 50 years old and was diagnosed back in 1970 -- the very same year the JDRF was originally founded (as the Juvenile Diabetes Foundation, at the time).
Scott's been in the information technology field for 25 years, but surprisingly, his contest entry focused on the concern that too much diabetes data can overwhelm us and that's there's a sore lack of attention to the psychological, mental and emotional aspects of diabetes.
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As it turns out, the emotional and mental impact of living with and/or caring for someone with diabetes is also topic of the August 2013 DSMA Blog Carnival, so we're doubling this interview as our contribution there!
(Thanks to our intern Amanda who talked to Scott recently to help compile this post.)
SS) I don't remember much of it because I was 7 years old. I was diagnosed in 1970. My mother diagnosed me. She could smell the ketoacidosis on my breath. I went to the doctor and took a blood test, which confirmed that I had diabetes. Most people have their training and such in the hospital, but I had mine outside the hospital on an outpatient basis. There was a flu breakout and they didn't want me in the hospital.
What was the basic message you aimed to convey in your video entry?
From a technological standpoint, we need tools to make life easier. All diabetics, type 1s in particular, seem to juggle an insane amount of numbers from sources that are not talking to each other. There isn't really anything out there that is able to take these pieces and put it together for us. At times, it becomes way too much. The lack of data I had growing up seems like it almost made things a little easier back then — there was less information to juggle.
You talked about how all the data coming at diabetics can be overwhelming and lead to depression. Is that something you've struggled with personally?
When I was diagnosed young, I learned I'd have diabetes and would have it forever and it would eventually kill me — probably by the time I got to college. That's not what anyone said; it was just the impression I took away. Combined with other things, this was almost a perfect storm for depression.
I grew up on a farm and was pretty much isolated, so when I got to school I didn't have the social skills to mix with the other kids. I got diabetes in second grade, so I was even more isolated because of that. There's also a history of depression in my family.
But I recently got a handle on things.
You've written a lot on your blog about diabetes and depression, and how you've come out of that... What advice would you give to other PWDs struggling or facing that -- especially in the context of overwhelming data?
If I'm feeling overwhelmed by data, especially when feeling depressed, it helps a lot to focus only on just the last couple of days and today. Don't worry about that next A1c. The past is over, learn from it. Tomorrow isn't here yet. You can have the best tomorrow possible by doing the best you can today. And today is really the only thing that you can have any control over. I do take data breaks where I just don't worry about too much except the last test I took. I take social media breaks as well, as it's simply impossible to keep up with everything and trying can be exhausting. As far as apps and devices go, unless it is a truly critical device, say a pacemaker, I don't really see much harm in taking a break from those as well. People take "pump breaks" sometimes and do just fine. The important aspect in both of these questions is "self-care": what is right for you at this moment to relieve stress/anxiety and to improve your quality of life?
Technology can be used to help with all the data we need as diabetics - can that same tech help with the emotional side as well?
What would you most like to experience at the DiabetesMine Innovation Summit?
I hope to experience better technology. Most of the technology I've used in the past, like the apps that are coming out, I don't find useful as a type 1. To use the app, I would have to do the work twice. I keep track of carbohydrates in my pump and then on the app. I check my blood sugar and then enter it into the app. I don't want to. I want to see a move toward interoperability and for devices to start to talk to each other through some middleman that can come up with an app to take logs from my pump and my meter, import the data, and then allow me to slice and dice it anyway that I want.
How this kind of advocacy potentially affect your life and the lives of other PWDs?
It's made it a lot better for me. When I first got online in 2008 looking for pump information, I wasn't into social media at all. I found a whole world out there of other diabetics. I found out that I needed the support, but until then, I had no idea that I did. It changed the whole approach of, "I don't really want to go to an in-person support group." It enabled me to integrate myself into the world of modern diabetes care.
Thanks for sharing your insights, Scott! Looking forward to seeing you at the Summit in November. And as always, don't forget to see what other DOCers think about this topic by checking out the DSMA site here.