Social media in the diabetes sphere is exploding, and patients are actually using online venues as one of their first lines of defense after diagnosis - and even years after their initial diagnosis. Logging online hours is becoming as important as getting in to see your endocrinologist these days.
When I was diagnosed with diabetes, I spent two weeks in the hospital learning how to give injections to defenseless oranges. After those two weeks were up, my parents and I were given prescriptions for insulin, test strips, a glucose meter, and a book about meal planning. And we were then thrust into the world of managing type 1 diabetes all on our own.
Compared to my diagnosis twenty-four years ago, diabetes care has come an enormously long way, and we as patients have the Internet to thank. Social media is, without fail, changing the way that people with diabetes are managing their disease. In addition to the prescriptions for insulin, a diabetes diagnosis now comes with a digital media method of care.
Where Are People With Diabetes Clicking Around?
Individual diabetes bloggers are a popular destination for both the newly diagnosed and the veteran diabetics. I've been writing my diabetes blog, Six Until Me, since 2005; it's where I chronicle what a "real life" with diabetes has been like for the past 24 years.
Another diabetes blog is The B.A.D. Blog (aka "Born Again Diabetic), which is written by a man who has been living with diabetes for twenty years and calls himself the Ninjabetic. Other bloggers, like Scott Johnson of Scott's Diabetes Journal and Karen G. of Bitter-Sweet Diabetes are sharing their personal experiences with diabetes, and giving slice-of-life advice as only a fellow person with diabetes can.
Ed: I'd like to add Amy Tenderich's Diabetes Mine blog, a long-standing diabetes blog which I subscribe to and enjoy. (Richard)
Social networks specific to diabetes are also a huge haunt, like TuDiabetes, a site developed by Manny Hernandez. TuDiabetes, which is comprised of over 15,000 people with diabetes, gives its users free reign to post photos, write blogs, and to participate in awareness initiatives like The Big Blue Test and Making Sense of Diabetes. Another popular diabetes social network is Diabetes Daily, where thousands of members are chatting daily in the forum and featured diabetes bloggers write weekly, in addition to the individual blogs being written by members.
Even the previously brick-and-mortar-only diabetes organizations are getting their webpages together. Now, even if you can't attend your local JDRF meetings, you can access their resources online - like the Type 1 Toolkit for adults with diabetes or the fundraising pages for local JDRF walks. The American Diabetes Association is expanding their online presence, with online versions of their Diabetes Forecast magazine and even their own public-facing blog.
Even my own diabetes care facility, the Joslin Clinic in Boston, MA, has a website that provides educational resources and support group information. And with these reputable organizations fleshing out their online homes, more and more patients are being referred to the Web for their basic disease education and support networking.
Why Are Diabetes Patients Clamoring For Care Online?
What's the big draw? I've attended a lot of healthcare conferences that all ask the same question: Why are diabetes patients the loudest and most engaged voices in the social space?
Answer: Because diabetes is every day. It's not a disease that you can manage by simply popping a pill and seeing your doctor once or twice a year. This disease, as a whole, requires thought and care every day. And for people who are living with type 1 diabetes, like me, the impact of diabetes hits at every morning, every meal time, every bed time, and just about every moment in between.
Diabetes is pervasive disease that gets into the nooks and crannies of our lives, and the Internet has become an unparalleled and powerful tool in dealing with the emotional and physical factors of this disease.
Photo by Jill A. Brown