I just watched the Friends for Life Video of the seminar on Social Media and The Monster Under the Bed
. I had wanted to catch it live when it first happened but of course I forgot that it was ongoing. I was really excited when I saw someone had posted a link that would allow you to watch it again…and then I lost that link. Needless to say, when I saw it posted on a friend’s Facebook page I pressed play instantly!
I was happy, but not surprised to see Jill Weissberg-Benchell note immediately the importance of the Diabetes Online Community. (I have been privileged to spend time with Jill at CWD conferences here in Canada). She noted the value of a group of people (real or online) who “get it”!! She further told her audience that 97% of posts onilne are accurate so those who are afraid of the “bad stuff” that they may find in social media circles are really only afraid of 3% of what’s out there. That is pretty impressive statistics.
The panel further noted that the DOC (Diabetes Online Community) is not about medical advice, its about support! Its about someone to talk to a 2am when you are awake and dealing with a low. Its about someone who knows how to keep an infusion set in place when swimming. Its about the little things that you don’t always think of asking your diabetes team. Its about instant access to information and help.
The experts were asked about how to involved lurkers in the online community and again great advice was given–the fact that they are reading means that they are learning and engaged. I have seen this often in groups that I have been a part of. A small number of people seem to do all of the posting or answering but every once in a while, you will see a person pop up and say “I don’t post often, but thank you so much for all that I have learned from you! Just hearing others going through the same as me means so much!” Get the message out there and people will listen.
But then came the question of how do you establish what a reputable blog or website is? There is the HON code which requires that health related sites meet specific criteria and registered sites are monitored regularly (sites like www.childrenwithdiabetes.com
are recognized). They also suggest that you consider sites that have been around for a lot of years (just so you know, www.diabetesadvocacy.com
has been around for about 12 years…wow where did the time go??). Finally, to look at sites or blogs that are recommended by friends or other reputable sites. To involve your health care provider, you can even give this list to them so that they can share with others.
All in all, Korey Hood summed up the role of the DOC best when he said that the online community is like your basal insulin. It is a constant presence that is there for you at all times. “In real life” interactions are big boluses of insulin. They are amazing surges that help us to keep going until we meet again.
I am so glad that I had the opportunity to view this video and would encourage others to do so as well. There are many great exchanges including a debate on parent blogging when panelists actually disagree (see the post at Our Diabetic Life
for more details). This video shows that the DOC is here to stay so adjustments and acceptances need to be made.
Normally I would take today to complain…actually I have a list of complaints, I mean topics that I planned to ramble on about this week. That changed yesterday when I read about a family who have amazed me since I first learned of them.
I don’t get the chance to read as many other blogs as I would like but I heard about a woman who had not just two boys like I have, but had FOUR and somehow was still functioning. I also learned that she had not just one child with diabetes, no not even just two children with diabetes but that three of her four sons had Type 1 Diabetes. In my mind this lady just went from amazing to superwoman! I have read her blogs and been amazed by her courage and her honesty.
I also belong to the Diabetes Advocates and have been able to see first hand this woman’s amazing spirit and giving nature. She has been there with opinions and words of encouragement on many issues.
Meri has been very public about her love affair with her husband. It came as a huge surprise to read that he was now undergoing a serious health crisis. Having previously battled a bout of cancer, he is now facing it again on a much more terrifying level. In Meri’s words, “…it is back in the form of 6 brain tumors, and multiple tumors in his lungs and abdomen. Metastasized melanoma. It’s pretty much the worst kind of cancer there is.”
I have never “met” this woman. I have never met her family. I have read of their courage. I have laughed at their coping skills. I am stunned at this latest revelation. There is little that we, the outside world can do but offer our words of support.
The family has also made one other request–prayer. No matter what your faith, no matter what you believe in, please keep this family in your thoughts and prayers. Send them “positive energy”, “healing vibes” and your support. On Sunday March 4th, they also ask you to join them in a prayer circle to pray for a miracle for Ryan, father to four, best friend and husband to Meri.