I’ve lived with T1D since 1965, diagnosed at age 11. It was in the “dark ages” for diabetes management, without all the remarkable technology available to us today, to “control” and “tailor” our insulin needs to our diabetes demands.
About 10 years ago, I was faced with health challenges that required several surgeries … and I started to experience the perils of being hospitalized as a person with diabetes. It was not a good realization. Hospitals took away my control and put me at great risk. I was scared. I worried that I would be helpless and at the mercy of the healthcare system. I worried about what was going to happen as I got older, became less capable of managing my technology, and lost my support network.
These are fairly normal concerns for anyone who ages, EXCEPT, as a person with Type 1 Diabetes, I have the added burden of managing the disease, including keeping up with technology, coping with insurance and pharmacy orders, determining where I will be able to live, plus all the what ifs (What if I lose my vision? What if I fall? What if I can’t take care of myself). SO MANY WHAT IFS!
A group of my local T1D friends gathered in my dining room to discuss these concerns, worries, and fears. What could we do, as a group of passionate, caring T1Ds, to identify the needs of those of us aging with T1D? Most of us had been told upon diagnosis that we would probably not live past age 40.
And yet, here we are, still living, still thriving and enjoying life, well into our 60’s and beyond.
What would we need, going forward, to feel safe, to feel prepared, and to feel relaxed, calm, and empowered?
—— Joanne Milo, “The Savvy Diabetic”