As a diabetes educator/healthcare provider (DHCP) I’m observing that the rapidly growing world of the Diabetes Online Community, the DOC for short, is helping people with diabetes (PWD) and their loved ones find support and feel supported. People and their caregivers are connecting, building relationships and feeling more positive about the challenges of managing their diabetes. I’m delighted to see this trend continue!
As a DHCP I’ve long realized that I can’t walk a mile in a PWD shoes. I can’t know what it is like day in, day out to deal with this challenging and relentless disease. But, what I do know is that we can learn from each other to change the dialog between providers and PWD to be more positive, more supportive. Goal one with these Dialoging about Diabetes interviews with diabetes activists is to help make living with diabetes…just a bit easier. Goal two is to enhance the two-way street – to help more PWD connect and encourage more DHCPs to connect PWD to the value of social networking.
Here’s my dialog with Kelly Kunik, who’s lived with type 1 diabetes (T1D) for 38 years as of Halloween 2015, (which was also her parents’ anniversary). She was diagnosed at the age of 8. Kelly notes, “My greatest weakness (my broken pancreas) has become my greatest strength & biggest passion.” Kelly is a Diabetes Advocate, writer, blogger, speaker, humorist, and consultant. She says, “I laugh every day and am passionately spreading the word about living a great life with diabetes.”
HW Q: You were among the early members of the DOC back in 2007. How did you find the DOC? What motivated you to engage?
KK A: I’d heard rumblings about blogging (personal journaling) back in 2006. I started my blog, Diabetesaliciousness, in 2007.
Honestly, I didn’t really know that there was the DOC. Nor did I know what I was doing.
Growing up I pushed diabetes into the background - I didn’t want it to be a big deal, but of course, like it or not, diabetes was, and is, a big deal.
In my life diabetes is this huge weed whose tendrils have wrapped tightly around my family tree. In my immediate family of eight, four of us were diagnosed with type 1 diabetes. My older sister Debbie died from complications in 1991 at 33. I wish that there had been a support system like the DOC when she was alive. I think it could have saved her life.
HW Q: How and why did you start your blog? How did you evolve the persona of your blog?
KK A: I’d heard about blogging and several people told me I should give it a try. The “persona of my blog,” is my voice. One of the first articles I wrote was about a certain celebrity who stated that she ‘had weened herself off insulin via diet and exercise and now considered herself a type 2.’
HW Q: What are your favorite topics to address on your blog? Who do you hope to reach, engage?
KK A: The topics I cover depend on the day, my mood and other things. I write about day-to-day life with diabetes, diabetes guilt and stigma, how diabetes is portrayed in the media, blood sugar issues, and funny things that happen only to people with diabetes. I write about what’s in my heart and in my head.
I also write about non-diabetes related topics like my mother’s illness and subsequent passing. The DOC was there for me when my mother died - they literally carried me.
HW Q: What other interesting and exciting D-focused projects are you involved with? What do you want people to know about them?
KK A: I’m always working on D projects! My latest project is the #IwishPeopleKnewThatDiabetes Initiative. It’s an initiative/website where people with diabetes from around the world can share (in more than 140 characters) their diabetes wishes, hopes, experiences, fears and frustrations in multimedia formats.
The website is slated to launch at the end of August/Early September 2015 and stems from the Twitter hashtag #IwishPeopleKnewThatDiabetes and the #IwishPeopleKnewThatDiabetes Day that occurred on twitter on April 22nd 2015. It was a tremendous success. People from 16 countries participated and to date, the hashtag has generated over 18 million twitter impressions. It’s a work progress that makes me proud.
HW Q: You share quite personally in your blog? What do you try to convey to others with diabetes and the world?
KK A: I do my best to perpetuate diabetes realities and bust diabetes myths. I want people to know that diabetes is 24/7/365 disease with no time off for good behavior. I want people to know that living with diabetes is doable and that PWDs are amazing, resilient, and tenacious. WE ROCK! I want DHCPs to know that PWDs are human and we are flawed... but we are trying our best.
HW Q: What messages would you like to convey to us diabetes healthcare providers (DHCPs)? How can we be more empathic, understanding?
KK A: I’d love DHCPs to realize that I haven’t had a day off from diabetes in 13,797 days. It’s incredibly important that DHCPs realize that every number has a story. That 6 a.m. 275 might be the result of a 2 a.m. low blood sugar of 42.
I love that more DHCPs are looking to treat the mental and the physical aspects of diabetes - and more need to get on board. They go hand and hand. Diabetes guilt and stigma affects every single person living with diabetes.
Finally, I want PWD and DHCPs to work as a team. Good communication skills are key - we need to talk with one another instead of “at.”
PWDs are the experts at living with our diabetes. DHCPs are the experts at treating our diabetes - working together. There’s nothing we can’t do together!
HW Q: How do you feel you’ve been able to take burden of having diabetes and being surrounded by so many family members with diabetes into a positive in your life?
KK A: I had two choices. I could see my life with diabetes as half empty and spend a lot of time and precious energy hating diabetes. I refuse to hate diabetes, because I refuse to hate myself. MY diabetes, for better or for worse, is part of who I am. If I hated it, I would hate myself. In living with diabetes for almost 38 years I’ve learned that working with my diabetes is much easier than continually fighting with and against it. I have more moments where I own my diabetes and fewer moments where diabetes owns me.
I’m proud and incredibly lucky that I’ve managed to turn my biggest weakness (my busted pancreas,) into my greatest strength and biggest passion.
HW Q: How have you seen the DOC evolve over the years? How would you like to see it evolve over the next five, ten years?
KK A: The DOC has grown exponentially in the number of D blogs and the number of people reading them. This means more people are finding comfort and support from others who “get” diabetes. That’s outstanding! I’d like to see the DOC include more DHCPs joining the DOC so we can learn from one another. I’d love to see more diabetes voices participating in advocacy efforts.
HW Q: How can people connect and follow you online?
KK A: People can connect with me via my blog, iwishpeopleknewthatdiabetes.com (live September 2015) on the Diabetesaliciousness and I wish people knew that Diabetes Facebook pages and the Twitter handles: @diabetesalish or @iwpktDiabetes.
Kelly, thanks for sharing your story and your passion. You have amazing energy to do good in the diabetes world!