Today, we're thrilled to share the story of fellow blogger and active advocate in the Diabetes Online Community (DOC) Mindy Bartleson.
She considers herself a "Georgia peach" as she's from a small town in the South but now lives in Boston, MA, along with her two kitties, Lilo & Stitch. Mindy blogs at There's More to the Story, has worked with the College Diabetes Network (CDN), and has just started an exciting new job in data-driven diabetes care.
Here's what Mindy had to say during our recent chat...
An Interview with Diabetes Advocate Mindy Bartleson
DM) Congrats on being chosen as a winner, Mindy... So, what was your intro into this whole diabetes world?
MB) I was diagnosed with type 1 diabetes on March 8, 2000, when I was 7 years old. For almost a year before that, I had been sick and losing weight. I was on medication after medication; problems with my kidney, problems with my liver, you name it. Most of the time, my parents were told they were overreacting.
One day, I decided I wanted glasses because I saw other
people getting them. I began “complaining” about my eyesight. We went to the
eye doctor outside of my town. He looked at my eyes and told my mom he thought
I had diabetes because of how the blood vessels looked in my eyes, but he
couldn’t make that call for sure. He worked with children with diabetes in
developing countries, so that’s how he noticed it. That evening I also gave
up my favorite food -- mac and cheese -- for more lemonade (because of how
thirsty I was). This was the final straw.
This was also before the Internet was a big deal and instead of Web MD, my mom had to flip through a medical book.
The next day, we went to the doctor, and they tried to turn us away again. My mom refused and pushed them to check my blood sugar. It was 589 without ketones, and soon after I became an in-patient in Atlanta.
I mostly recall being incredibly thirsty and upset that I couldn’t have lemonade. I don’t remember much after that, besides the fact that my mom was terrified to go home. She still hates needles.
You’ve also struggled with mental health and other conditions, no…?
My experience with mental health has been a little all over the place. Growing up, I didn't want anything to do with counseling until I got to college because I didn't have great experiences after my dad passed away when I was 12. I finally started therapy when I started college in 2011 because I was ready, and a grant from the University of Georgia helped cover the counseling services I needed.
I experienced a really rough time with diabetes burnout during my junior year of college. This lead me to look at mental health, especially regarding diabetes, in a new light. I adjusted my mindset to make sure I practiced self-care and acknowledged the negative parts of diabetes out loud and to myself.
Then, I was diagnosed with ADHD, anxiety, and OCD my senior year of college... But the diagnosis noted that I was presenting symptoms before I was 12! The person I met with also noted that I was experiencing this even before I was diagnosed with T1D when I was 7, which was eye-opening and helped explain a lot.
What more do you think needs to be done in mental health for people with diabetes?
There is a lot within the Diabetes Community, but also society in general that needs to be done. If I had to pick one thing to focus on, it would relate to the title of my blog "There's More to the Story." Often the focus is only on diabetes and this causes other things to get missed. Sometimes diabetes and mental health are intertwined, but somethings they aren't -- they just manifest themselves in each but might not be causes.
You’ve been pretty passionate about the College Diabetes Network over the years, including your most recent work for them… can you share more about your experiences?
I got involved in the CDN while I was in college, leading Dawgs for Diabetes, a Chapter of CDN at the University of Georgia. I wanted to get more involved in the D-community as well as give back to it. The Chapter involvement gave me a lot during college -- mostly confidence and the chance to be around others who understood.
After graduating college in 2015, I interned with CDN in Boston and went full-time as the Program Assistant that fall. I was promoted to Communications and Partnerships Coordinator last winter and spent a lot of time working with the Chapter Network and Off to College Program.
Any other diabetes advocacy efforts you’re excited to have participated in?
I also volunteer each year at the diabetes camp I grew up in, Camp Kudzu (in Atlanta, GA).
And I helped Insulin for Life USA with some of their initial outreach after their new documentary came out during the ADA’s Scientific Sessions in June 2017. I think the work they do is really important because instead of diabetes supplies going to waste, they can be donated to people who don't have access around the world (although it's not legal to do that within the U.S.). For example, all those extra lancets a lot of us don't use could go to people who otherwise wouldn't have them. I also really like the idea that just about anyone can get involved no matter what their situation.
We understand you just took a cool new job in the diabetes tech space...?
Yes, I’m staying in the Boston area now, and just this month (August) after volunteering at diabetes camp, I started working at Onduo as a Care Lead. This is the Sanofi-Verily Life Sciences joint venture formed in September 2016. Onduo is a digital healthcare company that uses data to help people with diabetes live their best life, and our name comes from our belief that progress is possible when we work in partnership and move forward, together. As a Care Lead, which is similar to a health coach, I'll be working with people with diabetes to empower them to manage diabetes and overcome barriers to management.
I firmly believe in empowerment and advocacy in all facets of life, and I love the opportunity to bring this and diabetes together in my professional life.
Can you share more about the book you’re writing and the crowdfunding campaign you just launched?
I've also wanted to write a book, but I always thought I would go into fiction. I still hope to, but after getting involved in the Diabetes Community and working in it, I started thinking about writing something else.
I wanted to focus on life and how chronic illness and mental health might impact it. I noticed a lot of rose-colored glasses around me (myself included), so I decided I wanted to finish all of the content before I was 24. I started this project quietly about two years ago. The book is about coming of age with chronic illness and mental health. I want to balance the positive and the negative – because yes, things can suck, but that doesn't mean you can't do it. I talk about growing up in the South, my diagnoses, and other experiences such as the impact of my dad passing away when I was 12 and the importance of people who 'get it.'
I’m self-publishing and just launched the crowdfunding campaign on the morning of Sunday, Aug. 27, so there is more information on the book there for anyone’s who interested in backing the project or helping to spread word. I’ll also be sharing more on Instagram, Twitter, Facebook, and my blog.
What are the biggest changes you've seen in diabetes since you were diagnosed?
The biggest change I’ve seen relates to insulin pumps and types of insulins. When I was diagnosed, my only choice was NPH and Regular, which was why I was so excited to go on an insulin pump when I was 9. I’ve also really appreciated the fact that pumps help you calculate your insulin needs!
What do you think are the biggest challenges right now in diabetes innovation?
I think that a lot of people are doing a lot of similar things, which straps resources and causes friction. There can be more collaboration so there isn’t so much re-creating the wheel.
In keeping with our "Problem-Solving" theme this year, do you have an idea to problem-solve a specific diabetes healthcare need?
I think there's a better way to explain mental health to children and parents of children with diabetes -- for themselves and for their children, especially teens. That all comes back to my personal story and what I’ve gone through, and I think we could do better. I'm working on crafting ideas, through my book.
As to the Innovation Summit… what are you looking forward to the most?
Interacting with people in the diabetes space and learning from them, as well as offering specific patient perspectives.
We look forward to seeing you there, Mindy. Thank you for sharing your struggles, and for doing what you can to make a difference in this community!