The Problem

It is time that the full scope of Type 1 diabetes is acknowledged, which includes millions of adults who are too frequently misdiagnosed as having Type 2 diabetes, an altogether different disease.

Sunday, April 12, 2020

Reflections on Living with Type 1 Diabetes for 25 Years

April 13, 1995:  When I was 35 years old, my health declined rapidly, and I was hospitalized in diabetic ketoacidosis (DKA). Before 1922 and the discovery of insulin, I would have died then and there.  I was devastated, and I cried through the entire night at the hospital.  I knew several people who had Type 1 diabetes, and their lives were really difficult, and I feared that for myself. In that moment, I never imagined I would live another 25 years with this disease, free of complications, much less learn to thrive with it.  I was also incredibly active and loved traveling the world, and I thought that I would be constrained.  When I was diagnosed, my mother was about to leave for a trip to Bhutan, in the Himalayas, where she would be completely unreachable.  Mom told me she wouldn’t go, which was quite unlike her, but I insisted she go on her trip to Bhutan and she did (years later, I would travel to Bhutan as well). My father called me every day while Mom was gone, to check up on me.  Even though family and friends did their best to comfort me and be there for me, it was the scariest moment of my life.  

Fast forward 25 years, and I am happy to say I have a great life.  There have been bumps and challenges along the way but through each of those obstacles, I have become stronger and more resolved to live my best life and help others along the way.  I am using technology to manage my diabetes that I never thought I would see in my lifetime.  I wear an insulin pump (Tandem tSlim with ControlIQ) that is linked with a continuous glucose monitor (CGM) in what is called automated insulin delivery. It is nothing short of a miracle. I continue to travel the world, not without some challenges along the way, but I do it (except not now, since we are sheltering in place due to the coronavirus). My last big trip was 2+ weeks trekking in the Peruvian Andes, where our highest elevation was a 14,550 ft pass.

I have learned a lot along the way and my journey is far from over. I am very grateful that I am a scientist, because managing Type 1 diabetes is a big science experiment. I have successfully advocated for the recognition that Type 1 diabetes is not a childhood disease—I still have a long way to go and much to accomplish, but I have seen progress.  I started a blog to help people who are diagnosed with Type 1 diabetes as adults, most of whom are tragically misdiagnosed as having Type 2 diabetes, an altogether different disease, due to the persistence of the myth that Type 1 diabetes is a childhood disease. I met many others with Type 1 diabetes, and discovered I am not alone.  I belong to a club of very determined people who are living every day with purpose and zest. The Type 1 friends I have met along the way are such a gift—thank you all. I have learned to slow down—when I was first diagnosed, my older sister told me that I was too driven and needed to slow down, and she was right.  Six months before I was diagnosed I began practicing yoga, and yoga and meditation have helped me to unwind.

After 25 years of living with Type 1 diabetes, my approach is now grounded in experience.  I take the best care of myself as possible, embrace and lean on my support network along the way, do a lot of exercise/yoga/meditation (my magic pills), help others especially the newly diagnosed (kindness and compassion are necessities), and live my life to the fullest (which includes a lot of traveling).  It hasn’t always been easy, and it was a really rocky start at diagnosis, but I have done my best for these 25 years and I have an amazing life for which I am grateful every day.