Editor’s Notes: Though the runners from previous marathon teams have type 1 diabetes, this story is applicable to people with type 2 diabetes who are also training for the NYC TCS Marathon.
Ashleyrose is a member of the Beyond Type Run 2022 team—a team of nearly 50 people living with type 1 diabetes who ran the 2022 NYC Marathon on November 6. They’re on a mission to raise awareness and funds for type 1 diabetes, with fundraising open through the end of 2022. Congratulate Ashleyrose by making a gift on her fundraising page!
Running does not come easy to me. I take little steps, even though in my head, I’m running like a gazelle. But I’m still a runner!
I’ve had to unpack and work through some negative experiences I had with running in my youth. I’m a Time Rich Runner, a phrase I coined in honor of all of us runners out there doing our thing regardless of how long it takes. On race day we’re doing the same distance.
Some are fast, some are somewhere in-between, some are time rich, and we may cover the distance in different ways, but we’re all out there! I have a great deal of admiration and respect for all of my fellow runners.
I didn’t think I could have diabetes
My diabetes story began over four years ago, shortly after finishing my first marathon in my hometown—the 2018 Rock n’ Roll San Diego Marathon.
I was experiencing the classic symptoms: exhaustion, excessive thirst, frequent urination and weight loss. I felt terrible.
I knew something wasn’t right when I started training for the 2018 Melbourne Marathon and had the worst run in my life. It was a 5K training run and the effort to manage it was colossal. I couldn’t get enough rest. Simple activities were laborious. I struggled in all aspects of my life.
I didn’t properly consider it though. I thought type 1 diabetes only presented in childhood (a common misconception, but half of T1D cases are diagnosed in adults!), so I thought the only thing possible was type 2 diabetes.
But I thought type 2 was unlikely because I had been on a health and weight loss journey and was otherwise quite fit and healthy. Since then, I’ve unlearned many of the myths and misconceptions surrounding the different types of diabetes and am continuing to educate myself.
Then I got my diagnosis
I was finally motivated to go to my doctor just after my 39th birthday. I had been feeling quite unwell for several weeks at that point and could barely manage to get through my own birthday excursion. That coupled with the dwindling weight prompted the call to my doctor as I knew how challenging it was for me to lose weight in the past and to do so without any effort was alarming.
Sure enough my doctor gave me a preliminary diagnosis of type 1 diabetes after testing me and finding that I had high blood glucose levels and large ketones. I was stunned. After the initial shock, I cried. My doctor comforted me and sent me to the Emergency Room.
Thankfully, my partner had accompanied me to the appointment and was able to take me to the ER. I was fortunate enough to have an attentive, caring doctor, who coincidentally also has a personal connection with type 1 diabetes.
In the ER I was administered insulin and fluids, endured a battery of tests and was given a crash course in type 1 diabetes by the great team at University Hospital Geelong.
My diagnosis story took an interesting turn when I tested negative to all known type 1 diabetes antibodies. While it is an autoimmune disease, a small percentage of people test negative for known antibodies and are categorized as having idiopathic type 1 diabetes.
It predominantly impacts people of color and is under-researched and I’m hoping to bring more awareness to this underrepresented group of people with idiopathic type 1 diabetes.
Adventures in marathoning with diabetes
I have adjusted to life with type 1 diabetes. Every day is an adventure and an ongoing experiment. I didn’t get to run the 2018 Melbourne Marathon; my diabetes diagnosis was still quite new. I was doing fingerpricks and I hadn’t built the confidence to run a marathon so soon after diagnosis.
But my work as an actor and performing artist helped me learn about how to manage my type 1 diabetes in changing circumstances. I learned that the adrenaline and nervous energy before a performance can cause a sharp spike in my blood glucose levels.
When I’m in a production, I communicate my access requirements to the production team, a diabetes access area backstage is organized and we discuss an emergency response plan. As a performer, I feel empowered when I have those steps in place. It took the same steps to help with marathon training.
Ultimately, I got a Dexcom continuous glucose monitor (CGM) and that transformed my relationship with running with diabetes, giving me the confidence boost I needed. Having a Dexcom made running more accessible for me and helped me get my second marathon and the first after diagnosis under my belt, a virtual one during the height of the pandemic, on Wadawurrung Country. I ran my third marathon on Kumeyaay Country running the 2021 Rock n’ Roll San Diego Marathon.
After four years, a series of life events, the pandemic, and wayward timing, I finally crossed the finish line in the heralded Melbourne Cricket Ground at the 2022 Melbourne Marathon, completing my fourth marathon and earning my long-anticipated bling.
I’m carrying that momentum with me as I tackle my fifth marathon, the New York City Marathon with the incredible Beyond Type Run Team. I’m so excited to be on this odyssey and have learned a great deal about myself in the process.
I look forward to running more marathons in vibrant, time-rich, empowered style. I’m planning to celebrate my successes at Disneyland and will extend the celebration on the lovely beaches in my beloved San Diego.