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Posts tagged ‘#P4DC’

Stigmatized Secrets.

I’ve spent the last few weeks keeping watch on the My Diabetes Secrets Tumblr account (a version of Diabetes PostSecret – more here) and these two submissions keep leaping out at me:

The submissions as stand-alone pieces make me feel like I’m trying to shove limitless emotions into a Ziploc bag, but what kills me is that these were submitted anonymously.  There’s still something about diabetes, and the fear and stigma associated with this disease and all its iterations, that keeps people from feeling empowered/supported enough to say this shit out loud.

This week, I received an email from some PR company professing that diabetes is a disease of numbers and control, and when lab work is “in range,” the disease essentially melts away into insignificance.

Oh yeah?

It’s high time for the psychosocial impact of diabetes to be acknowledged.  People living with diabetes aren’t ruled entirely by our pancreases … there’s a lot of heart thrown in there, too.

For more anonymous secrets, check out My Diabetes Secret.

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.

 

Partnering for Diabetes Change.

Will you be at the CWD Friends for Life conference? There’s panel taking place, 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.  Here are some details:

I am proudly involved with this project, and am inspired by how the diabetes community supports each other, with that support contributing to improvements in all facets of our diabetes health.  The people involved in patient communities are what matters.  From an article I wrote in diaTribe a few months ago (but it still rings true for me today):

“Through connecting online, and in person, people living with diabetes have concrete proof that they are not alone, and that there is health worth fighting for, even after a diabetes diagnosis. Social media has saved lives in the diabetes community. It has helped people who are struggling with their diabetes to take control and improve their health. It shows people that there isn’t such a thing as a ‘perfect diabetic,’ but there can be an educated and determined one. It lets people know they aren’t alone in the ebb and flow of their diabetes management. It doesn’t encourage people to wallow in their troubles, but serves to inspire them to do the best they can, and to seek out the best healthcare they can find, both at home and in their doctor’s offices. A strong support system goes a tremendous way in making a difference for someone living with diabetes.

… I hope that the results prove what we as a community have found, but while we wait, we continue to share our personal evidence of the positive impact of social media. For now, the evidence is anecdotal. Eventually, the studies will show what we, as part of the diabetes community, have felt all along: personal connections between patients matter. The proof, for us, is in the people.”

I hope this discussion is the first of many.  If you’re at CWD, please sign up! And if you are off-site, you can attend virtually by signing up here.  For more information on Partnering for Diabetes Change, click here for a PDF.

{disclosures}

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