First, thank you to Chris for allowing me to post about #RABlog week on his web site. Chris volunteered this space to let me explain #RABlog week which is September 21 to September 27, 2015. This will be our first ever #RABlog week, so I appreciate the opportunity to explain why it is being held and why my web site RADiabetes.com is the sponsor. But first let me answer the biggest question .
Why are you talking about Rheumatoid Arthritis (RA), I thought you had Diabetes?
I am a person with Type 1 and was diagnosed with diabetes when I was 16. That means I have been a PWD for 41 years. So it is natural that I most closely identify with the diabetes community. But in 2000 I was also diagnosed with Rheumatoid Arthritis and in 2010 Ankylosing Spondylitis (spinal arthritis). While the three diseases are not related they all result from an over active autoimmune system which destroys things like Beta cells, connective tissue and other necessary stuff. We like to say RA is the body turned on itself. But in truth all autoimmune diseases result from the body turning on itself, so that is nothing new to we type 1’s.
The RA community is different
In 2015 I started to write in earnest about life with RA. Almost immediately when I wrote about RA, I noticed two important differences between the RA and Diabetes communities. First the RA community is much smaller. Some estimates put the number of people with diabetes at about 20 million diagnosed in the US. The RA community comprises slightly less than 1.5 million and even that is “a slippery number” as described by my fellow RA blogger RA Warrior.
The second difference I found was the sense of community. In the Diabetes world we have major web sites dedicated to diabetes issues and several independent bloggers. Now, admittedly most are dedicated to type 1 issues, but the difference is profound. Hardly a day goes by that some new product, service or person comes or goes from the diabetes marketplace. In contrast, RA has relatively few sites dedicated to RA issues, far fewer bloggers and only a handful of products.
Frankly, this leads to a sense of community that would be called anemic by diabetes standards.
How does one help create community?
One of the best parts of the Diabetes Online Community (DOC) is the annual #DBlog week. For those who have not participated, each year we start with 9 prompts and each day for a week most bloggers in the DOC blog on a single topic. Seven topics in seven days with two alternative topics (if the blogger is not excited about the daily topic). The seven day event yields around 600 blogs per year. But more important than the number of blogs or issues discussed is the sense of community that #DBlog week builds.
I want to promote that sense of community for the RA community. #RABlog week will have the same format as #DBlog week, with a few small changes. One important difference between RA and diabetes is fatigue, (which is one of the worst symptoms of RA), the topics will be announced early so bloggers can start work before #RAblog week begins if they wish. The second big change is that #RABlog week is focused on efforts to attract people who rarely blog, to participate in the event.
Increasing the number of bloggers might be a tough goal to reach, but for such a small community, increasing the number of bloggers would be a big accomplishment.
Finally, since I am relatively new to the community I have used crowd sourcing strategies to increase participation in the event. To date I have crowd sourced the selection of the #RABlog week’s badge, boarder and now I am conducting a survey to help select prompts for blog week.
These are the four stated goals of #RABlog week:
- Promote the cross reading (by bloggers) of RA blogs. This will develop camaraderie, awareness, and cross pollination of blogs in the RA community.
- Promote the discussion about important topics trending among the RA community,
- Build awareness of advocacy opportunities which involve the RA community, and
- Promote the use of other social media tools to promote blogs by individual bloggers.
These are big goals for such a little community, but I do not expect we will reach them in the first year. This effort is a long term effort and I expect (like #DBlog week) it effort will grow over time.
Getting the word out
My main media stream to promote #RAblog week is twitter and this has borne some fruit. By this writing, I have had 34 responses to a survey I am operating to select blog prompts and that survey will remain open until about September 1, 2015. If you would like to participate in the survey you can do that by clicking here (https://www.surveymonkey.com/r/5K7FCF7). You may ask why am I inviting people who may not have RA to participate in selecting blog prompts? The reason is goal number 2. If we make our prompts interesting to readers, I hope we will attract more readers. The blog prompts survey will remain open until September 1, 2015.
So far I have identified approximately 15 bloggers who are a little more than casually interested in blogging the entire week. Nothing like what is common by DOC standards, but a project must start somewhere and this one will expand as time goes on.
Vision for a broader RA community?
It is true, the RA community is doing well without me and #RABlog week, so a fair question is why get involved beyond writing blogs? The short answer is that it is a new challenge. I am not naive enough to believe one week of blogging will magically transform the RA community. But it can be a step in our joint efforts to advocate for patients, and better care. If participation in the DOC has taught me one thing, it is that the blogging community can be important for advocacy. I also know that #RABlog week can be a big part of the RA community going forward.
With that in mind, I hope if you have or care for someone with RA, you will join #RABlog week. I promise we will have fun, learn a lot and perhaps we will get to know fellow bloggers who also struggle with RA.
The event is September 21- 27 and information can be found at http://www.radiabetes.com/home/rablog-week-white-paper/. Yes the fun is building. And the fun includes building relationships, community and advocacy I hope even if you just read our blogs you will come join the fun.