This year, Birdy decorated our hands all on her own.
Happy Thanksgiving, everyone! Thanks for being part of my extended family.
This year, Birdy decorated our hands all on her own.
Happy Thanksgiving, everyone! Thanks for being part of my extended family.
[I have a working relationship with Animas. My disclosures are here; please read them.]
During the middle of one of our discussion sessions, Daniela D’Onofrio let fly a statement that defined the whole blogger summit for me:
“Care what the community thinks, not what the community buys.”
Last week, the European Animas team brought a group of diabetes advocates together for a face-to-face discussion. This meeting is very special to me because it serves as a portal into the global diabetes online community, bringing advocates from different countries, speaking different languages, together at the same actual table.
And at that same table is the company responsible for believing in our voices: Animas. Several years ago, there was an air of awkwardness when it came to plunking different diabetes demographics into the room – did you really want to talk about the company RIGHT IN FRONT OF THE COMPANY? It felt weird. Strange, kind of like when someone asks if they have something in their teeth and you know you owe it to them to fess up about the giant chunk of broccoli sitting between their two front fangs but instead you say, “Nah! You’re fine,” and then nothing changes.
This was a meeting that included talking about that broccoli. We weren’t in an ivory tower talking about ivory tower-type things. We hit upon topics that felt uncomfortable at times, including the absence of type 2 voices at the table, and the perception of our meeting from the outside. It got sticky, the discussions, because we didn’t dance around any awkwardness. Instead, we tried to embrace it to move forward. When respect is coupled with honesty, more good comes of it. Now, years after those first meetings between the diabetes community and diabetes companies, people are being straight up about their needs and wants. There’s a power to that.
And, as a group, we recognized our privilege. We knew we were flipping lucky to be in that room, many with the support of Animas, and that the meeting is not a yearly guarantee. So we took advantage of our time together. We were honest, regardless of who was listening or taking notes. Our agenda included topics around incorporating and encouraging type 2 diabetes voices, diabetes and well-being, working through advocacy burnout, and building trust between diabetes companies and diabetes communities.
Annie has written about her experiences at the summit here, with some detail from her perspective on the sessions. More posts from other attendees are in the works, and the event was sort of documented on Twitter using the #IntlDOCExchange15 hashtag.
For me, the discussion about type 2 voices was the most eye-opening. It was understood that we were there with the Animas team, so therefore the folks in attendance were either Animas users or caregivers to Animas users. With insulin pumps not indicated for use by people with type 2 across the board, it made sense that the attendees were people touched by type 1 diabetes. Made sense, but still seemed wrong. We talked for a long time about how uncomfortable it can be, at times, to bring different groups together at times, but how necessary it is on the whole. I’ve been a longtime proponent of bridging the gaps between types (ashamed to admit my own preconceived notions in the past) and it felt good to see the people in our sessions talking openly about the common ground between the diabetes types, even if not everyone saw that common ground at first glance. People are people, regardless of their diabetes “type,” and to pretend we don’t have common ground is truly unreasonable.
Together, we’re stronger; no caveat added.
It was in that last session that Daniela summed up every company interaction (or simply every interaction, ever) that’s been productive, at least for me. Understanding and caring about the needs of the people touched by diabetes is what really matters; community and business objectives alike benefit from that level of interaction and involvement. This applies to people with type 1 diabetes, type 2 diabetes, type whatever diabetes.
So how can diabetes companies best serve the overall community? By caring more about what people think than what they buy. (Or, in terms that are more my speed: Give a shit about PEOPLE, not purchases.)
And I think that’s happening. Less slowly than before, and certainly surely, patient advocates across the health condition spectrum are raising their voices and being HEARD.
Our group’s viewpoints were not representative of the entire diabetes community (just as my post here is not representative of the entire summit), or even of our respective regions, but it was powerful to have different individual opinions shared comfortably and openly. Many people in the group were returning to the meeting for the third or fourth time, but there were a few new faces, and it was encouraging (inspiring, even) to see those new voices welcomed into the fold.
I’m very appreciative that Animas trusted me to facilitate these discussions, and allowed me the opportunity to meet with my global DOC partners to move the mission forward. Especially when they, as a company, are not dictating the mission, but are instead along for the ride with our community as a partner. Props, and thanks, for that, and for pointing out the broccoli while simultaneously picking it out of their own teeth.
(And with that, I’ll end that particular gross and specific metaphor.)
“So that’s a …” and her question trailed off with a note of empathy and curiosity, her hand gesturing towards the Dexcom sensor on my body.
In the summer time, I can most often be found either on an airplane headed somewhere for work or on the beach, pretending not to work. (There appears to be no in-between. And I’ll admit that there might be a little sand in my laptop.) On airplanes, it’s easy enough to conceal my diabetes devices and allow disclosures, if any, to take place on my time.
But at the beach, in a bathing suit under the bright sun, there’s no hiding anything.
There’s a new column up at Animas.com, closing out summer officially for me with “No Hiding It.” TL;DR (but please do go read) – my daughter’s new friend’s mom and I went to the beach, and my pump and sensor, and their associated tan lines, were a discussion point.
Nothing like educating others with our toes in the sand.
I can’t hear the name “Nick Jonas” without immediately hearing the then-teenaged cousins in my family clutching their invisible pearls and screaming, “OMGNICKJONAS” as if it was one word. In my mind, I think of Nick Jonas as a kind and smart … not because I have any personal experience to base that assumption off of, but because he’s also living with type 1 diabetes and I tend to be somewhat (read: entirely) biased towards people hosting broken pancreases.
Nick was diagnosed with type 1 diabetes about ten years ago and has recently joined Dexcom as a Dexcom Warrior. He’s been talking with members of the media about his new partnership and how CGM has changed the way he manages his diabetes, and somehow I managed to sneak in as a member of media. I missed the scheduled call with OMGNICKJONAS but his team was kind enough to carve out some time one-on-one while Nick was traveling. (And, for the record, this whole phone call took place with my daughter skipping by my office door, a giant inflatable stegosaurus being kicked around like a soccer ball. Such media.)
Kerri: You’ve been part of the diabetes community for ten years now, and have been an advocate for this disease almost since your diagnosis, right? Can you talk a little bit about what made you want to go public with your diabetes, and how that’s influenced how you feel about it?
Nick Jonas: I went public with my diabetes story six months after my diagnosis. The thing for me was about being as open and transparent as I could be to find support. I didn’t know any other diabetics. By sharing my story, I wanted to seek out and encourage people that this can be okay.
Kerri: So upon diagnosis you weren’t immediately greeted with stories about people’s Great Aunt Ethel who was mostly dead?
Nick Jonas: (Laughs.) No. Soon after diagnosis, I actually befriended a nurse whose son was a diabetic. For my mom and I both it was nice to have someone to talk with who had a better understanding of diabetes. People try not to overwhelm you with all of the information, but this friendship helped. I was encouraged.
Kerri: I’ve been wearing a Dexcom CGM system since 2006 and the data is incredible to see. How about you – has CGM technology influenced the way you manage your diabetes?
Nick Jonas: It’s one of those things that, for me, I feel like I have a best friend looking out for me. Which is the best thing. I manage my diabetes kind of by myself. I’m kind of personal about it. I like to have control over it, and I’m independent. With my CGM, I know what’s coming, and that makes thing so much more simple.
Kerri: Do you know the high and low alarms from the receiver by heart?
Nick Jonas: I do. (Laughs.) I’ve been totally in range for the last few days, though, so I haven’t heard the alarms in a while. One of the directors on KINGDOM, Michael Morris, is also on the Dexcom and we are always comparing our numbers.
Kerri: When I travel for work, I make use of the Share application for Dexcom so that my family can keep an eyeball on me. What are your thoughts on being able to SHARE data, and do you SHARE?
Nick Jonas: It depends on the situation. I don’t like my mom to be stressed about my diabetes so I don’t share with her, but my brother has looked in. We were recently in Las Vegas and when we woke up the next day, he knocked on my door and said that he received an alarm, and that I had been a little bit low.
Kerri: That’s like the ultimate “big brother” moment. So for those moments when you do SHARE, are there ground rules for the people who can see your data? Like “Don’t ever call me when I’m high, but call when I’m low” sort of thing?
Nick Jonas: Yes, we set those rules. Don’t stress if it’s a number like 200 mg/dL, but if I’m below 60 mg/dL you can call me.
Kerri: You’ve mentioned the perspective gained from life with type 1 diabetes. How has that perspective shaped you as an artist?
Nick Jonas: It comes down to responsibility. At an early age, I had to learn to live with a disease and how it affects how I live my life. I don’t want the things I’m able to do or not do be dictated by diabetes. It’s not perfect; days can be unpredictable. But at 22, almost 23 years old, I’m aware of what kind of a person I want to be as a result of diabetes.
There’s always a way to see something in a positive light. You’ll live a miserable life if everything that’s challenging is a disappointment.
Kerri: I’m glad you brought up the idea of perfection, because whether you want to be or not, you’re in the “role model” position in the diabetes community. How do you feel about having people looking to you for inspiration, diabetes-wise, and how do you stay inspired yourself?
Nick Jonas: I think it’s a two-way street. In moments when I’ve had tough days and needed a pickup, someone mentions that their child or friend has diabetes and that my story helped them. Hearing that keeps me doing what I’m doing.
Kerri: And you feel like you can be honest about the good and bad days with diabetes?
Nick Jonas: Yes, definitely. In the past, I’ve been hyper-insecure about admitting that I had really tough days because I want to stay positive. But without a doubt, anyone that lives with diabetes has tough days.
Kerri: I appreciate all of your honesty about diabetes. But diabetes can’t be the only thing we talk about. People want to know the life that diabetes is a part of, right? Like what bands are on your playlists these days?
Nick Jonas: Right now? I just made a playlist on Spotify, actually. I’m listening to a band called Purity Ring, this song by Melanie Martinez called Pity Party, and this song by Haim.
Kerri: Did you know that one of the girls in Haim has type 1?
Nick Jonas: Yeah, actually. My brother met those girls at Coachella and told me that one of them was diabetic. That was pretty cool.
Kerri: Did that make you like their band more?
Nick Jonas: I definitely liked them already, but finding that out didn’t hurt.
Thanks to Nick for candidly talking shop, and to Dexcom for supplying media photos that make me feel slightly uncomfortable for posting, but I’m going to do it in the name of science. For more information on Dexcom, you can visit their website. And for my personal Dexcom disclosures, you can read my disclosure page.
Copyright © 2015 Kerri Sparling & Six Until Me. 2005 - 2015. All rights reserved.
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