The Vibe: Positive, friendly, energetic!
Walking from my hotel room to the Opening Key Note breakfast buffet, I run into a green and orange bracelet wearing family. We exchanged “good mornings” and walked towards breakfast like long lost friends.
I hit the buffet, filled my plate, grabbed a coffee and found my friends in a Ballroom packed with 2,074 people. We talked, went over our schedules for the day, and chowed down.
After a performance by Crystal Bowersox (yes, THAT Crystal Bowersox), it was time for the Richard Rubin Memorial Opening Keynote by Dr. Desmond Schatz, who was discussing diabetes advances and roadblocks spanning the past 25 years.
Dr. Schatz believes that eventually, everyone in America will be screened for diabetes.
Paraphrasing Dr. Desmond Schatz: It’s time for combinations of diabetes drugs to be used - instead of a one-time hit - use them in ways that are impactful and pack a punch!
The pancreas is crazy sensitive and crazy complicated – and it’s difficult to study because touching a pancreas can cause bruising and pancreatitis.
Islets (as in Islets of Langerhans - endocrine cells that produce insulin, etc.) are different in children than in adults. Taking it one step further, Islets are different within individuals - which is why diabetes treatment must be personalized. YES!!!!
Like muscles, our immune systems have memory.
The keynote ended, the room emptied, parents made a bee-line to drop-off their “littles” to childcare and then head to their chosen sessions/support groups.
Older kids, tweens, and teens met their counselors in front of the grand ballroom and headed to their own set of activities.
I check my FFL app and realized that I was right where I needed to be for my first session of the day, “Positive Caregiving, AKA - Don’t Be The Diabetes Police”, presented by Dr. William Polonsky - President and Founder of the Behavioral Diabetes Institute.
Dr. Polonsky started off by saying - and I’m paraphrasing here: It’s imperative to have someone in your corner - as both a person with diabetes and a person who loves someone with diabetes.
Loving/caring for someone with diabetes is a delicate dance between positive caregiving and being a nag. Parent and partner insomnia is real, nagging isn’t helpful, neither is abandoning.
Orange and green bracelets need to locate the helping place in the middle.
Living with diabetes isn’t always easy - for the person living with diabetes or the people who love them.
And sometimes the people who love us the most (and I’m paraphrasing Dr. Polonsky) can accidentally cross over to the dark side, becoming experts at negative caregiving - saying and doing incredibly dumb things with the best of intentions, in the name of love and out of fear.
We are talking about the Diabetes Police: An individual/group of individuals that the universe has deputized to help a loved one with d to manage their diabetes - and whether they like it or not.
According to Polonsky, every DP Officer joins the ranks from a place of love - and usually in response to the person with diabetes deciding to state their independence and do the opposite of what the Diabetes Police decree, criminalizing the person with diabetes in the process.
Threatening the diabetes perp with complications doesn’t work.
Teens and the majority of humans aren’t concerned with long-term consequences, only short-term realities.
Unsolicited advice, (despite well meaning intentions) isn’t always appropriate or appreciated.
A few of the examples Dr Polonsky gave of what not to say to a person with diabetes:
You eat too much sugar.
Isn’t your blood sugar a little high?
At least you don’t have cancer!
Challenging blood sugars happen.
Instead of blaming, say something like: Let’s figure out what to do now.
Acknowledge when your person with diabetes is doing something right - not just when they’ve screwed up.
Don’t always be in the face of your person with diabetes - but also don’t leave them alone with it.
Make the effort to understand diabetes from the POV of the person with diabetes.
And when it comes to your role, you don’t have to always try to fix - just listen when they bitch about diabetes.
After having lunch with friends (both old and new), I headed to Finding Your Tribe Via Social Media.
The panel discussion was moderated by Scott Johnson and Kerri Sparling, and panelists included; Cherise Shockley, (Founder of #DSMA, #WOCdiabetes, and The Blue Fridays Initiative) Michele Auerbach (creator of the Lovelightandinsulin blog, Co-Founder of the ChronicLoveClub.com, ) and Mary Lucas (Head of Influence Engagement at BeyondType1.org).
All familiar names and faces from the DOC.
People participate online for different reasons.
For instance, Cherise began participating in D Social Media when she joined tudiabetes.org back in 2008. because like Cherise, tuD’s original Founder, Manny Hernandez also had LADA Diabetes.
Back in 2008, not many people knew that LADA Diabetes was a type and or existed, let alone sharing their experiences online.
The Diabetes Online Community is continually evolving and changing.
People in Diabetes Social Media spaces are now being invited to speak and hold seats at the table.
The Diabetes Online Community is responsible for helping to direct how we want to be communicated to and with - we are changing the game and driving the agenda ourselves.
Both the diabetes industry and diabetes (dot) Orgs have changed because of Social Media.
In the session, Kerri reminded attendees and panelists alike, of the VERY LONG HISTORY of the diabetes online community - which has been around for decades, pointing to Jeff Hitchcock, who founded childrenwithdiabetes.com back in 1995 as an early example.
AOL chatrooms, D forums, and the early days of blogging were brought up by moderators and attendees.
Diabetes blogs and online communities are not new.
Sidebar: Scott started blogging about diabetes in 2004, Kerri started sixuntilme.com in 2005, and Cherise started the weekly diabetes #DSMA twitter chat in 2010.
On a personal note: I started diabetesaliciousness in 2007 and participated in AOL Diabetes Chatrooms in the late 90s.
The Diabetes Online Community needs to use diabetes media mishaps as teachable moments to educate the masses, not vilify.
If you want to get to know the community better - look up different diabetes hashtags - not just your type of diabetes - there are more similarities than differences - and together we are stronger.
No matter the platform(s), don’t be afraid to let others know that you are new to diabetes social media.
It’s easy to get discouraged and overwhelmed because the landscape is huge.
Letting others know you’re a newbie helps you to feel less stressed and makes navigating through and between social media platforms and communities easier.
Never lose track of your WHY. As in: Why you posted. Why you started blogging.
Why you started engaging online.
Worry about the quality of support and communication - not about the number of followers you have.
There’s something for everybody in the Diabetes Online Community. Find what works for you!
My last session of the day was Language Matters - presented by Jane K. Dickinson - RN, PhD, CDE, 2018 AADE’s Educator of the Year.
Jane a t1D herself, likes to focus on living well with diabetes - and has done so for 44 years.
Acknowledge that parents/others who love people with diabetes are going to be more focused on a cure for diabetes - but until then, language makes a difference in the moment and in the long-term.
In diabetes, language makes a difference - both in the moment and the long term.
It's not just word choice that makes a difference re: diabetes, it's also the tone of the words and body language. As in a trifecta re: Language matters.
Ditch the labels. Attaching labels to people (good, bad, smart, stupid, non-compliant vs compliant) means that people (including healthcare professionals) tend to treat people like the labels they use to describe them.
Favorable labels, more often than not, lead to favoring by healthcare professionals.
Negative labels impact us negatively.
GOOGLE “Expectancy Theory.”
The words we as people, and people with diabetes, use to portray ourselves to the world, become the way the world sees us - and that’s a key takeaway worth remembering.