Chronic Blessings 2015 – Community

When we are first confronted with RA or Diabetes we usually feel alone. Even if we know others there is something about being told you have one of these conditions that just feels isolating. I know, for me, when I was diagnosed with diabetes I already knew many with type 1 diabetes (mother, other children older and younger) but still in that instant I felt isolated. I adopted a notion of me against the world. I was determined to win.

Looking Inward

The hospital staff and others I knew were so positive and they tried to reassure me that others were working hard to make my life better, but I could not get my mind around that concept. To me it looked like the entire world did not have diabetes and it was me in my time, doing battle. Even when I was married and we headed into life together, I still felt like diabetes was my sole responsibility, a burden I had to bear, something not to trouble others with.

RA was different, by then Sheryl and I had been married over 23 years and I understood that what happened to me happened to us. But even then I knew only one other person diagnosed with RA and despite being in pain most of the time he was older and he had one chronic condition whereas I had two. Also, the people with diabetes I knew when I was younger had all fallen out of my life so I knew no one with this pair of chronic conditions. So I faced it alone and I personalized the diagnosis.

In a way, that is the male and in particular the American male way to deal with things. Our myths and legends are built on self-reliance. Growing up I was taught to be prepared, rely on no one else, figure your own way out, look first to yourself to solve problems, and I was assured that if I followed that mind set I would never be disappointed because there is so much disappointment in the world. Those words and phrases are what my generation of males was taught and it was fine as far as it went and if it worked in the common world why not with illness as well?
Believing this narrative of facing things alone, not surprisingly, it took 8 years after I was diagnosed with RA and 31 years after I was diagnosed with diabetes before I sought communities of people who might offer insight into either. I was, facing life as I had learned, straight ahead and by myself.

Looking outward

In 2008 I joined my first online community. I am so thankful for www.TUDiabetes.org. The people on that website opened a whole new world of community. I joined (I told myself) to help others. I found enormous help there myself. New techniques for care, new friends, and yes the chance to help others. As I have interacted with the community, I interacted with people with diabetes who are thought leaders in this community and hopefully help some people who had just been diagnosed who needed a kind word or a helpful tip.

After a few years of writing blogs on TUDiabetes I was introduced to twitter communities. At first, I was shy about joining new discussions. I first found Diabetes Social Media Advocacy (#DSMA) on Wednesday evenings at 9PM EST and then Diabetic Connect Diabetes Education (#DCDE) on Tuesday evenings at 9 PM EST. Both are great twitter chats about diabetes with terrific leaders and participants. These broadened my scope of the community related to diabetes. I find each to be important pieces of what I consider community. And each led to other communities I value a great deal, among them Karen Graffeo’s site at http://www.bittersweetdiabetes.com/ which hosts DBlog week.

With RA I am still searching for that one awesome community.  I have found that myRAteam.com allows the best contacts in the RA Community I have found. I enjoy blogging at www.CreakyJoints.org, and because of their editorial support my blogging has improved a great deal. I am very grateful for that help. I have also found other great twitter communities with the hashtags #JointDecisions, #ChronicLife, #Rheum and #SpoonieChat. My favorite RA community is #RABlog week at my page RADiabetes.com. If you have an interest you can still visit all 180 plus blogs written this inaugural year.

The Blessing of Community

All of this leads to one thing, in 2015 Community has been a major blessing. I am so thankful for the support, laughs, and friendships others have given me this year. As I write this I am reminded of something I read the first day when I visited TUDiabetes. No one should face diabetes alone. That is a terrific motto not only for Diabetes but also RA. Because no one should face any of this alone. Not even me a guy raised and indoctrinated to believe that going alone is the best way.

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