Since September of 1986, when I was seven, I have been living with type 1 diabetes. Day one of diabetes is mostly a blur for me, but I remember that my mom picked me up from soccer practice early, as my pediatrician had called and said there was an elevated amount of sugar in my urine. We were told to pack a bag. My parents mumbled the words “diabetes” to one another and they both cried, and I had no idea what was going on, but knew it had to be serious if Dad was crying, too. I was sent off to spend 12 nights at Rhode Island Hospital, where I practiced injecting insulin into an orange before learning to push needles through my own skin that same day. I also remember feeling the heave and shift of my life’s foundation on that day, as I made room for diabetes. I think everyone in my family felt that shift.
And that feeling isn’t unique to my family alone. I talked with several folks in the diabetes community – parents of kids with diabetes and adults who were recalling their own diagnosis – and that moment of “shift” was banked in the memory of many. Parents remember the moment that diabetes came crashing in, and how they adjusted to this new version of normal.
“The moment indelibly etched in my memory bank is our beloved pediatrician telling my nine year old daughter that she had diabetes. My daughter looked up at Dr. Mindy and said, ‘Does that mean I’m gong to DIE?’ To which her doctor replied ‘No, it means you’re going to have to LIVE differently,” said Renee Holtzin Bernett.
Amanda Heikkinen received her child’s diabetes diagnosis while she was shopping. “I still vividly remember receiving a phone call whilst out shopping telling me to collect my four year old son from day care and to take him to the children’s diabetes clinic immediately. Utter kindness and patience from all the medical staff guiding us through the overwhelming process of keeping my son alive. What did I do wrong and it’s not fair kept repeating themselves in my head and often out loud. It’s been 10 years now.”
Some adults recalling their own diagnosis have a very matter-of-fact way of recounting the story, ticking the box of “diabetes diagnosis” in the way that helped them move back into the status quo as quickly as possible.
“I started doing my own injections from day freaking one because of the nurse I had in the hospital. She was so stabby with the syringes, so I decided to take over. The other nurses were all so impressed at my initiative, but I just didn’t want to get any more hard and fast stabs. I let them believe that I was a self-sufficient unicorn,” said Jacquie Wojcik, diagnosed at age 10.
“I remember the first time I got low there, too. I remember the nurse very seriously telling me the symptoms and that I must call them if I feel it. I was writing on my new Lion King notepad with my Lion King pencil, snuggling my Simba stuffed animal when it happened. Well, it became hard to write, my lines were wiggly, I felt shaky, then it clicked, I was low! I’ll never forget the pride I felt when the nurse tested me and said yes, I was low, and she told me I did a great job.” shared Joanie Lutz, also diagnosed at age 10.
Elizabeth Tull was diagnosed at the age of two, and the treatment of diabetes hadn’t reached a high level of finesse yet. “One thing I know is an actual memory is the glucose tolerance test the friend did to try to figure out insulin dosing. She had me drink a cup of sugar water, and then collected my blood in tubes for analysis, five times within an hour. There were apparently no lancets in those days, they had to use a razor, and I still remember the terror of it, my mom holding me down, trying so hard to be brave, but after the second finger poke I fell into pieces.”
“I remember not understanding and wanting to cry, but then not crying because I saw that my mom was about to cry. Neither of us ended up crying. I also remember thinking I was pretty cool for handling injections and my dad telling me it was not a disease, just a condition. For some reason, that word choice made a big difference in how I saw myself for a long time to come,” said Fatima Shahzad, diagnosed with type 1 as a kid.
“I was only 4 years old, but I remember leaning up against my closest door while my mom rubbed my butt really quickly to try to numb it before my shots. Oh, and so many Snoopy Bandaids. Every finger,” said Briana Wolin, diagnosed as a small child.
“Apparently I woke from a coma in the hospital, was told I had diabetes, and said ‘I’m glad it’s me and not some other kid because I can handle it,’ and went back to sleep,” said Melissa Lee, diagnosed with type 1 in grade school. “I don’t remember it. What I remember is being given a list of a dozen names for sugar and being told to learn it. Twenty-seven years later, I’ve yet to see ‘hydrogenated starch hydrolsate’ in an ingredient list.”
A diabetes diagnosis doesn’t come with a set of instructions. Sure, it comes with recommendations and suggestions, but there’s no “how to” of life with diabetes. Most of the time we figure it out as we go, which is what brings us together in our little corners of the Internet, sharing our best practices and worst moments. Whether you’re on your first day of diabetes or your 15,000th, Happy World Diabetes to YOU. You’re changing the way that diabetes is presented to the world – increasing honesty and realism – and you’re proving every day that there’s a good life to be found after diagnosis.
