“So what happened here,” and my doctor would point to a single blood sugar from three Thursdays ago, a 243 mg/dL at 3 am.
And I wracked my brain trying to remember what happened that night. Had I changed my pump site before bed? Sometimes that causes a high afterwards. Did I eat a snack and miscalculate the insulin dose to cover it? Did I over-treat a low? I couldn’t remember specifically what happened. Do I make something up? Do I lie?
I shrugged with frustration. “I think diabetes happened there.”
Type 1 diabetes doesn’t exist outside of the context of life. I wish it did; I wish diabetes was something that existed independent of everything else in my life, making it absent the influence of variables like exercise, eating, and emotions. But diabetes is a pervasive, persistent thread that weaves its way around every aspect of my life, from breakfast to the last thought before falling asleep at night. It’s the preposition that dangles off of every thought – “with diabetes” – and makes my disease a constant and necessary priority.
Minimally Disruptive Medicine makes sense as an approach for chronic illness because it flies in the face of what chronic illness attempts to do, which is to disrupt. Diabetes is very disruptive and intrusive, so making my care approach towards the disease more streamlined and integrated creates a culture of hope, motivation, and effort.
When it comes to building a care plan with my medical team, my personalized variables need to take center stage. Ask me what my goals are, instead of building treatment recommendations around what you think my goals should be. Do I want an A1C that’s within ADA guidelines? Of course. But am I willing to achieve that goal by way of several low blood sugar events per week? No way. My doctor’s goal may be to improve my fasting blood sugars, while my goal might be to overcome my fear of overnight hypoglycemia. How do we take medical guidelines and best practices and balance those within the context of my real life?
Diabetes maps differently in every single life, so personal preferences take precedence. You recommend that I wear an insulin pump to help best control my blood sugars? Prescribing the device is one thing, but I also need training on how to integrate this technology into my real life. Connect me with peers who wear their insulin pumps safely and confidently at the beach, or while running, or while tending to the needs of their small child.
Show me “how” instead of telling me “why.”
Talk to me about my preferences, my goals, and my life, because that’s where my diabetes exists. Diabetes exists around my life, not the other way around. I don’t build my life around diabetes. It’s not a hole in me or the whole of me. There’s life to be found after diagnosis, and my focus remains on making the most of that life.
Kerri Sparling has been living with type 1 diabetes for over 29 years, diagnosed in 1986. She manages her diabetes and lives her life by the mantra “Diabetes doesn’t define me, but it helps explain me.”
Kerri is a passionate advocate for all-things diabetes. She is the creator and author of Six Until Me, one of the first and most widely-read diabetes patient blogs, reaching a global audience of patients, caregivers, and industry. Well-versed in social media and its influence on patients, Kerri presents regularly at conferences and works full-time as a writer and consultant. Her first book, Balancing Diabetes (Spry Publishing), was released in the Spring of 2014.
Kerri and her husband, Chris, live in Rhode Island, USA with their daughter.