Wednesday, October 5, 2011

The ‘Other’ Side of Community

A simple message came across my Twitter-feed, in response to one I’d sent about an article regarding the idea of the Diabetes Online Community.

The individual on the other end of that Tweet was the article’s author, a respected pediatric endocrinologist who’s been Living With Type 1 diabetes for more than four decades and has been described as a luminary in the field of D-Management.

His message about the online D-Community: “Caveat Emptor!”

Or: “Let the buyer beware, when engaging in this potentially-dangerous online health community that might be trying to give medical advice or sell a product to those with diabetes. Online flash mobs are a risk, and they can certainly be a danger in the diabetes community as well.”

The Tweet that got me to the column/letter/article in a Texas newspaper in the first place: “With Diabetes Social Media sites there is potential for much good but also the potential for 'bad.' See if you agree:" Article link was here.

Clicking on the article, I saw a headline: “Be wary of diabetic-related social media sites.”

So I read. And some passages screamed out at me:


Social media sites for diabetes are enticing. People frustrated by brief contact with their doctor and not getting their calls returned or questions answered in a timely fashion will logically turn elsewhere for help. Getting a quick online response from a person you think has gone through what you are experiencing is very seductive.

The power to share common experiences is an overwhelming force. The dark side of social media in diabetes is its equally powerful potential to disseminate myth and misinformation. Health care professionals are involved with many sites, even if only as casual observers and not active content contributors. But even this is not meant to be a replacement for the attention provided by a health care professional who knows your medical history.

Social media applied to diabetes best fulfills the adage "double-edged sword."To quote another ancient wisdom: "caveat emptor": let the buyer beware.

Ok. First of all, I totally get that privacy is a concern when we’re talking about sharing anything online. Especially in the health care context, when medical decision-making and lives are on the line. That “be careful” message isn’t off base, at all - it's imperative. Not to mention in these days of widespread identity theft. But these warnings must be given in the correct context. While this uncertainty and hesitation certainly might be true on its face, and I wholeheartedly agree that people SHOULD be careful when it comes to online writing about health or otherwise, what bothered me about this article was that NOWHERE did it mention the D-Community that I’ve come to know and embrace in recent years.

Nowhere did it talk about a place where real stories are shared. A place of support. Friendship. Fun. Advocacy. Important context about the health care industry and regulatory environments. Yes, information and education and learning and adapting is a part of that… but that’s not really the “focus” – it’s about the people and connections, as a community. We are honest people sharing our experiences, not people out to make a buck or sell some snake oil (even though I understand these issues do exist online and do find their way into this community).

It makes me wonder: Has this person EVER ventured into this community? To an online site such as TuDiabetes or DiabetesDaily? Engaged in the blogosphere or #dsma discussions on Twitter? Has he ever experienced the support and community that our members share in, the sense of being part of something so “life-changing” and bigger than ourselves that it’s tough to even describe?

Certainly didn’t seem like it, from my reading of this article.

Seems like it may just be observations from a distance, general warnings localized for the diabetes readership, touching on this from the outside looking in.

And that’s a shame. Because the "good' of the online community needs to be better represented to those who might not be aware of what's out here. The article seemed to tell only half the story, glossing over the other side without even trying to balance out the overall point of what’s being written.

For me, it wasn't about answering a specific question about my diabetes; it was about offering a way to address the unspoken, oft-unrealized feeling of isolation that comes with a chronic condition. The sense that you're being taught the textbook management and living guidelines, but not how to actually live with it. When I stumbled across the DOC and began seeing it expand, it addressed that feeling that I’m not alone, that I can lean on friends when I’m feeling burnt out or down about my D-Life, and that being open and talking about my diabetes is an important part of coping that helps keep me accountable.

None of us proclaim to be doctors or experts, or “doctor replacements.” Most, if not all, of us have visible statements posted declaring this. There’s a simple mantra our community lives by: Your Diabetes May Vary. What works for you, may not work for me. We offer support and tell our stories. We do our best not to judge our fellow DOCers, unless someone specifically requests that or the situation warrants it.

All of the “dangers” that exist in this 21st century model of interacting are very important, but you can’t ignore the other part of the story. The side to what good this does present to those who are open to it. I think it’s important to make sure that other side of the story is known so that people can see the life-changing positives the Diabetes Online Community offers.

Maybe this is what some in the medical profession see the community as - a place where dangerous medical advice and information is being doled out to the detriment of their patients. Maybe the risks don't outweigh the potential good, and so it's better to warn PWD about and not talk up the community online? I don't know. For me personally, the benefits far outweigh whatever vague, general risks might exist in a network of strangers.

I have no doubt there are "bad" apples and that caution is important. But we can't live our lives in fear of what could happen - because then we'll never experience any of those moments of wonderful that might be so close, so life-changing. That is something worth recognizing.

19 comments:

Reyna said...

You are definitely part of the "moments of wonderful" that I have experienced via the DOC Mike. Very good food for thought here.

Meagan said...

Amen! Finding the DOC also helped me cope and know that I'm not alone. That's HUGE after feeling all alone for close to 16 loooong years!!! The DOC is invaluable to those of us dealing with "D", and as you said...we realize that "Your D may vary". Great post Mike. :)

Maria Q said...

I wonder what kind of experience he has with the Diabetes Online Community. Maybe he needs someone to reach out to him and show him what we all know best: When there are days where you feel crummy and diabetes is kicking your butt, having friends that understand it helps enormously.

This an especially strange post since more and more doctors are starting to understand the concept of d-burnout and the psychological/emotional challenges of living with a chronic disease. It's kind of surprising how cathartic it can be to "talk" those feelings out.

Nikki of Our Diabetic Warrior said...

Great post Mike! Since Diabetes can be a beast, it's imperative for me to have people living with type 1 or have a CWD to share with. The DOC is a WONDERFUL support group!

Renata said...

Awesome post....did you happen to send this to the author? It might just open their eyes a bit.

Wendy said...

The DOC has been a lifesaver for me...I can't imagine life without the DOC!!!!

jdca2025 said...

Hi Mike,

I agree very much with everything you mentioned here. It is important to be careful when it comes to medical advice, but the diabetes online community in large is filled with supportive and interesting people who have unique experiences to share. It is not only for people who are not getting enough time with their doctor, it is a place where all diabetics can come share their stories. Often times the net is the only real direct way to reach out to others from the community.

Overall the DOC has and continues to help a lot of people, and is an important tool for getting the word across regarding diabetes news and events. It is not so much different from real life - there are dangers involved, but it shouldn't stop one from getting involved.

Kathy said...

I think that social media is like a conversation on line. You get a feel for someone by reading what they write and can agree or disagree with what they say as well as assign a level of credibility. I have never met a blogger who is not sincere in what they write about, but not everyone has the same exact feelings or experiences with diabetes that I have. Thats what makes this all so interesting and a wonderful learning experience.

And to your question to me: No, I don't consider this a cure, but it is a lot better than what I had before. Viewed as a continuum, it is a mile from where I was and a few feet from the cure. :)

Kelly Rawlings said...

This was one of my (many) favorite lines in your piece: "For me, it wasn't about answering a specific question about my diabetes; it was about offering a way to address the unspoken, oft-unrealized feeling of isolation that comes with a chronic condition. The sense that you're being taught the textbook management and living guidelines, but not how to actually live with it." Thanks, DOC friends, for showing me how to L.I.V.E!

Brenda F. Bell said...

A lot of the author's fears are justified; just consider how many spam tweets you've gotten for the latest "herbal cure for type 1 diabetes". I have seen the social order on large sites, and have at least once fallen afoul because of a conflict of interest. Despite the freedom of the Internet, after a while, we learn that there are things we may not say on a social site because of whom it will offend, and how. (As an example, I may not publicly tow the libertarian line on medical care -- that it should be completely privately funded -- because too many of our people want the government to steal from the healthy, and from healthcare investors, to pay for our medical care.)

Melissa said...

Great post Mike! The DOC is about so much more than the "facts" of diabetes. It is about support and understanding that most of us don't get from the medical professionals that are too busy or don't return phone calls (as alluded to by the author). I've been reading the blog posts about Simonpalooza and I think that is a perfect example of how much of a positive force this community is. It goes way beyond medical advice.

Scott K. Johnson said...

Great post Mike - I appreciate your take on this, and I agree.

Thank you for offering the positive side of the equation - one that, unfortunately, many people like the author of the article don't seem to understand.

Jill said...

Mike: Kelly said it best. I've never been given and never taken "medical advice" from my fellow DOC'ers, and I've often blocked the spammers Brenda talked about - and although I could see where someone desperate could fall for a juice or raw diet cure, etc...., I think you made a good point that we all consult with each other about the aspects of living with this disease that doctors cannot address, even those who battle it and manage it every day as we do. There is a human side of this disease, and practitioners should wake up and realize that we are not coming to them for that side for a reason.

Meri said...

Amen. I guess with anything, you find what you look for. If you are looking for the supportive side of the DOC, you will find it. Heck, it is waiting for you! Great read Michael!

Hallie Addington said...

Great post!! Life without the support I've found online? I can't imagine. Very lonely

I think Sweets is better taken care of because of the discussions I have online. I know more. I know what to ask her doctor. That doesnt mean I give out medical advice nor do i take it. I'm not a doctor- I just PLAY one in real life!

Plus, emotionally.... Wow. She might not know any other kids with T1. Most certainly not know the adults that she's met and LOVES. We are incredibly blessed by this community. But as with anything- you must be smart!! don't check your brain out when you log on!

Great post!

Mari Ruddy said...

There's a really cool new book out called Public Parts, How Sharing in the Digital Age Improves the Way We Work and Live by Jeff Jarvis. He wrote What Would Google Say, another awesome best seller. I love the idea of shareing MORE not less in the world today.
Thanks Mike for your awesome perspective.

Penny said...

How did I miss this post of yours Mike? Glad I am catching it now though. Sorry for my late response...
You know, I saw that message to, sort of buyer beware and all and I thought 'has that person ever been IN the DOC to say that?' it was almost a little condescending, as if we couldn't, for ourselves, be able to pick out the flowers for the weeds. At least that's the way I read it as. No one in the medical community, upon ignoring a T1's emotional and community needs all these years, tells you to beware of the doctors!
I have learned more, laughed more and felt more community in the DOC than in any doctor's office I have ever been in with my cold. They would sooner amputate her arm or leg than meet her emotional needs. Sorry, but that's the way I feel. So, BRAVO to the DOC for filling such an empty place for all of us.
Beware indeed.
Great post Mike. Glad to be in the DOC with ya.

lnelson said...

a well created response in very DOC like fashion, which means, this post was written with respect to even the ones who don't seem to fully understand. that's what I find in the DOC, acceptance and understanding. It's the "social/emotional" part of my healthy living.

Anonymous said...

here is a helpful website for people exercising and playing sport.

http://www.ext1d.com.au/diabetes/


Sounds like last century people standing on the roadside saying "these horseless carriages won'y catch on". Doctors can't get used to being the font of all knowledge and often their patients knowing more about latest treatments than they do. My endo relies on me to tell her what new technology is available.