Here at the ‘Mine, we are constantly in awe of the amazing work so many folks are doing in the name of diabetes awareness! Thus, our semi-regular “Amazing Advocates” series…
Today, we’re excited to feature the awesome Cherise Shockley, founder of the #DSMA (Diabetes Social Media Advocacy) weekly Twitter chat. Cherise was diagnosed with LADA (Latent Autoimmune Diabetes in Adults) in her early ’20s, and now lives in Indianapolis as a mom who works full-time and is also studying for a degree in Media & Mass Communication for a digital audience. She launched DSMA almost exactly eight years ago on July 23, 2010 (!), and it quickly became a source of inspiration and support for the online community.
Of course, social media has evolved considerably over the years, and a new study focusing on #DSMA and peer support itself showed the true impact of connecting with peers who “get it.”
Please take a read of our recent chat with Cherise:
DM) Hi Cherise! First, can you share a little about yourself for those who don’t know you?
CS) I’m married to a great husband who lives with type 2 himself. We have a 12-year-old daughter, a “bonus” daughter, and two grandchildren. Diabetes decided to invade my body with (LADA) in June 2004 when I was 23. I love using social media to connect the diabetes community and exchange support with my peers, and my favorite social media platform is Twitter.
What inspired you to start #DSMA?
In 2010, I lurked and (eventually) participated in the Healthcare Communications Social Media (#hcsm) chat, moderated by Dana Lewis. It was empowering to watch and chat with healthcare providers (HCPs) from around the world on healthcare issues and how social media can help. I was participating in #hcsm and I had an “Aha!” moment: the DOC (Diabetes Online Community) uses Twitter a lot. We should have our own organized Twitter chat to discuss healthcare issues around life with diabetes.
Now, eight years later, can you tell us what you personally get out of hosting #DSMA?
I found the DOC in 2008. I didn’t have peer support for the first three years of my diagnosis. I want to make sure no one else living with diabetes (directly or indirectly) feels like they are alone. I treasure the friendships and extended family that I’ve gained. I can go to sleep knowing that people who participate or lurk in the DSMA Twitter chat, listen to or call in to DSMA Live and Wear Blue on Fridays know there are other people out there who understand what it’s like to live with diabetes. I also get to see people “come out,” i.e. learn to embrace diabetes and share it with the world. It’s powerful, moving, motivational and it inspires me.
Have you run into skepticism?
When I first started out people, would tell me offline that this wouldn’t work. Well, here we are. It’s amazing. This has improved my own quality of life and views on diabetes, and I am always touched by the stories people share. I never thought this would turn into what it has. This has opened up so many doors and connected people in our community.
You transformed this into a non-profit organization as well, right?
Yes, I announced my plan in 2012 for a new organization called the Diabetes Community Advocacy Foundation (DCAF). That happened in 2014, but it’s no longer a non-profit org even though the #DSMA activities still fall under this umbrella.
How can people get involved in DSMA? Do you have to be really active on Twitter?
No, you do not even have to have a Twitter account. All you have to do is follow the hashtag #dsma. You can participate in DSMA’s twitter chat every Wednesday, 9pm EST, and you can also follow @diabetessocmed which hosts the chat and is moderated by a great group of volunteers from around our Diabetes Online Community.
What motivates people to be involved with DSMA? What kind of feedback have you received?
DSMA is more than just a Twitter chat. Diabetes Social Media Advocacy is a real-time communication resource for people living with diabetes, caretakers and healthcare providers. For example, a number of years ago, DSMA hosted a monthly blog carnival for folks to elaborate on topics from the Twitter chat. That eventually went away when my own life commitments made balancing time more challenging. But as our diabetes community grows and evolves, we are continuing to come up with ideas and ways to open up communication between people with diabetes and healthcare professionals.
I’ve received a lot of positive feedback from the diabetes community, the Pharma industry, and a lot of lurkers too. All say that DSMA is empowering, fun, interesting and it helps connect and provide support for people directly and indirectly affected by diabetes.
Can you tell us a bit about the weekly online DSMA radio show you launched? What was the idea behind that?
In November 2010, DSMA Live was created to continue the conversation from Twitter. It’s a live one-on-one interview with patients, healthcare providers and industry professionals. We wanted to reach people with diabetes that may not read blogs, have a Twitter account or participate in the DOC. We also wanted to bridge the gap between patients, diabetes organizations, Pharma, healthcare providers and the greater diabetes industry.
Unfortunately, that great group that included myself, and diabetes advocates Scott Johnson and George “Ninjabetic” Simmons, also got busy with other aspects of life and we have put DSMA Live on hold for the time being.
At the upcoming American Association of Diabetes Educators (AADE) conference in Baltimore, we do plan to hold an in-person live DSMA Twitter chat. We’ve done this in years past and it’s been very successful, and we’ll continue that for 2018. There will be a DSMA Live in the evening on Aug. 16, so make sure to tune in for that using the hashtag #AADE18 and following me at @sweetercherise on Twitter.
What has been the most challenging thing about running DSMA, and how do you overcome those challenges?
I would say the most challenging thing about running DSMA is finding the time. I’m a wife (my husband is in the Army and is diagnosed with type 2 himself), a mother, and I work a full-time job with Roche Diagnostic’s Accu-Chek. I’m blessed. My husband Scott, my daughter and the Advisory Board are very supportive in all things DSMA.
A study was recently published about peer support looking at #DSMA chats. What did that tell you?
Yes, it was so humbling to see that data showing such an incredible impact of #DSMA, and how it touches lives in just one weekly chat on Twitter. My friend Michelle Litchman, a respected Certified Diabetes Educator in Utah, led that research and included some other great voices in diabetes — Christopher Snider, Perry Gee, Linda Edelman, and Sarah Wawrzynski. In just that one chat examined, the topic was “aging and diabetes” and there were 494 tweets with ~2 million impressions. Expand that over eight years, and you get the idea of how many people have seen #DSMA chats. You can read that full paper, “Diabetes Online Community User Perceptions of Successful Aging with Diabetes: Analysis of a #DSMA Tweet Chat.“
What are your hopes for the future of DSMA?
You’ve also started focusing more on diversity in the DOC, correct?
Yes, I recently started Women Of Color with Diabetes on Instagram to encourage women from diverse communities to share images of their experiences with diabetes.
As I told the Just A Little Suga diabetes blog earlier in 2018, I believe that people of color who have diabetes should make room for themselves in diabetes-focused discussions and spaces. I long for the day when I’m not the only black person in the room, and I encourage people with diabetes in communities of color to get jobs within the industry, emphasizing that there is place for our insight. That’s why I’m here.
I want to change the narrative of what people see, in the media or pamphlets, in local communities and online. I’d also like to use Women of Color as an avenue to share scholarships to attend conferences, to elevate and encourage and empower women of color to be a part of the discussion and influence policy change in diabetes.
These days one often hears talk about “exclusivity” and how the DOC needs to better embrace a variety of voices. Any final words to share on that issue?
I do see there is a disconnect in our community and we have to recognize that. Personally, my mom raised five kids by herself and we struggled. So yes, I get it. Even if I don’t talk about my upbringing, I do want people to know that I understand. But it’s not about me, it’s about making sure people’s voices are heard in the community. There’s an opportunity for all of us to have better conversations with each other and listen.
Thanks, Cherise! We’re so happy to have you making such a difference in the DOC!