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Posts tagged ‘Friends for Life’

FFL: Social Media as Part of the Prescription.

At Friends for Life this  year, there was a special panel discussing “Social Media & The Monster Under the Bed: The Latest Thinking on Fearing vs. Embracing Social Media,” focusing on efforts to validate the role of peer-to-peer support in diabetes management.  Moderated by members of the diabetes online community, the panelists included:

  • Korey Hood, PhD – Associate Clinical Professor of Pediatrics at University of California, San Francisco
  • Jill Weissberg-Benchell, PhD, CDE – Associate Professor at Ann and Robert H. Lurie Children’s Hospital of Chicago
  • Barbara Anderson, PhD – Professor, Department of Pediatrics, Section of Endocrinology and Metabolism at Baylor College of Medicine
  • Jeremy Pettus, MD – Internal Medicine Physician, San Diego, CA

Pretty awesome panel (and the discussion was live-streamed – video embedded below).  The point of this discussion was to get health care providers talking openly and honestly about their thoughts on people with diabetes finding support online.  “In terms of how healthcare professionals view the DOC, I think that there are mixed feelings about it,” said Korey.  “I think that some can see the value in it and see it as an extra resource and others are a little bit worried about the information that individuals can take from the online community and whether it will be accurate and consistent with their recommendations.”

“What do we do to get providers using this [social media] more, I think it requires a change in mindset, using social media as another tool,” said Jeremy.   “We concentrate on using insulin or the pumps and CGMs, but we don’t really think of this as another way of of helping our patients reach their A1C goals.  As we all know, diabetes is a very psychosocial disease and we have a lot of tools to help people ‘get there,’ but there’s a big disparity between what we can do and what actually happens.  That’s kind of where I see social media and online support fitting in – taking what the providers can do and adding the support element to make sure it gets done.  I think of this as another way of reaching treatment goals.”

Barbara tackled the question of whether or not HCPs think support is important in terms of predicting or improving patient outcomes.  “I think the assumption that medical providers would think support is important – I wish that was right.  I think that what medical providers think is important is the algorithm that I’m giving you, or the prescription that I’m giving you.  Not that the reality is that it’s [also] the support.”

Korey added to that:  “I do work in changing patient behavior because it’s easier than changing provider behavior.”

Actually, in the meetings leading up to the event, the goal seemed to be to validate the role of the DOC in patient outcomes, but throughout the course of the discussion, it became clear that validation wasn’t ‘necessary.’  The fact that there were so many people in that room, talking about their experiences and how they’ve learned, grown, and benefited as a result of being involved in the DOC was enough.  The proof is in the people.

Jill summed up things nicely for me:  “Social media is here to stay.  It’s an amazing opportunity to meet with people who have the exact same experience that you have, who get it at a level that your family, no matter how much they love you, can’t get.  You get this sense of community that is impossible to get at your doctor’s office.”

Diabetes is a background issue.  The BEEP of the Dexcom as it alarms for a dropping blood sugar isn’t preceded by the loud scraaaatch of a record needle scraping across the vinyl, signifying a break in the soundtrack of our house.  And my insulin pump is simply something that I wear.  Except at Friends for Life.  There, a wailing Dexcom can cause seven different people to reach into their bags, furrowing for a jar of glucose tabs to offer up.  And my insulin pump becomes a show of solidarity.

This summer was my fifth Friends for Life conference, and I don’t like the view of my life without it.  For years, diabetes was the thing that made me different, and made me the odd one out in my elementary school, then high school, then college, and so forth.  But now, thanks to a flourishing diabetes online community and conferences that are centered around educational and emotional support for people with diabetes, diabetes is what makes me the same.  People I’d never know, or ever have anything else in common with become friends and a huge part of my support network in the context of living with diabetes.

The influence of the support of others who understand can have as much of a positive impact as anything else prescribed for life with diabetes – maybe more so.  Feeling emotionally capable of managing a daily, demanding disease is what keeps me doing what needs to be done, and staying adherent/compliant.  All aspects of my health are better for it.

Thanks to the panelists for raising their voices about this topic, and I look forward to watching conversations evolve.

 

Friends for Life Frenzy.

Bringing Birdy to the Friends for Life conference was awesome, because I was finally able to introduce my bonkers Birdzone to my friends in the diabetes community.  (And by “finally,” I mean in a way that counted.  When I brought Birdy to the conference when she was two months old, it barely counts, because she was more in the “burping and pooping and sleeping,” which she’s still into, but in a different capacity.  Except the “sleeping” bit. She’s not really into that.)  This year, my daughter was part of the party.

This year’s Friends for Life conference was different, for me.  With my mom and my daughter traveling with me, my perspective was skewed, seeing the conference through my own eyes (as an adult T1D PWD and faculty member), my mother’s (the parent of a grown-up CWD), and my daughter (the kid of an adult T1D PWD – holy acronym).  I watched as my mom worked to find her footing, immersing herself into a large network of other parents, even though her own kid was now grown.  I watched my daughter reintroduce herself to some of my favorite people, like Scott and Christel, and hug them fiercely.  I saw how Friends for Life could touch the lives not just of people living with diabetes, but for the people who care about the people living with it.  Because they’re also living with it.

As part of the conference team, I was responsible for co-leading several sessions, including the impact diabetes has on dating, a discussion about pregnancy, one about parenting, and a session on social media and the diabetes online community.  These discussions always serve to reignite my passion for connecting with other people who have diabetes, and talking about ways to improve our collective experiences.  (That, and they’re fun.)  More on these talks later, as I unpack suitcases and reclaim the parts of my brain that smash words together.

It’s a busy conference – lots of running around – and the breaks are brief and coffee/glucose-tab fueled.  There are so many people there that I want to talk to, and so many that I want to give huge “thank you” hugs to.  Running from session to session, with stop-overs at daycare to bring Birdy to the bathroom and then drop her back off with the other little kids, I felt like there wasn’t ever enough time to do or see it all.  I wanted to slow everything down, but the week rushed by at an incredible pace that left me hoping for ways to stretch hours into days.

It’s sometimes too much, trying to find words to describe how this conference has changed my life over the years.  I knew I wasn’t ever truly alone, but sometimes diabetes can capture you in a cage of isolation, making you feel like even small changes are too big to make.  But then you look around, right?  And you see the sea of green bracelets on the wrists of people whose pancreases are the same as yours, holding tight to family members with orange bracelets, and becomes more than diabetes.  It’s more than insulin.  It’s more than meters.

On Thursday night, at the FFL banquet, Scott and I were honored with the Friends for Life award, recognizing our work on our respective blogs, and also in helping to bring the “adults with type 1” track to life for the conference.  That night, I couldn’t figure out what to say.  Even now, a few days later, I still don’t know, other than a “thank you” that doesn’t even begin to scratch the surface.  But I do know that those awards stand to recognize not just individuals, but what the DOC has done and changed over the last decade.  Every voice matters, and every story heals.  For me, sharing these stories has been part of the prescription for good health.  Being part of this community has improved the way I manage my diabetes, and I am forever grateful.

Our lives are all different, from those without diabetes, and even within our own diabetes community.  In a week at Friends for Life, we learn that our differences can be empowering.  And our sames can be uniting.

“Mawm, I wuv confwences,” Birdy told me, spinning the orange bracelet on her wrist.

I touched her orange one with my green one, and she smiled.  “Me too, love.  Me too.”

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