This is the first time I am speaking publicly about my life with diabetes.
When I was diagnosed with Type 1 as an 8 year old in 1973, I did everything I could to hide my illness from everyone. I just wanted to be known as Abby the cheerleader, Abby the student, Abby the softball player, Abby the happy camper…not as that kid who had diabetes who had to test her sugar by peeing in a cup, putting a few drops in a test tube, and adding some tablets to determine if I had “a little” sugar or “a lot” of sugar. Can any of you relate to this? You can’t even imagine what the life of someone with diabetes was like 43 years ago…
I also didn’t know ANYONE else who had diabetes. There were no support groups (I started one), no blogs, no websites, no nothing! So I have been very slow to come forward with my daily struggles. I always just did what I had to do, quietly. As others before and after me have said, you kind of feel invisible with diabetes. You can definitely live with it, you can even have a productive and “healthy” life… but very few talk about how much work it is! Every single move you make has to take into account how it will affect your blood sugar (and therefore how you physically feel) and what action you will take to try to stabilize it… eat more, eat less, take more insulin, take less insulin, workout harder, don’t workout today, counting carbs, calculating ratios, changing infusions, silencing the CGM alarms, testing, testing, testing. It’s 24/7.
I am so grateful for my endocrinologists throughout the years. Perhaps I selected them because they were the ones who were willing to help me figure out how to live my life on my terms. Dr. Robbins at first, Dr. Stern when I was in college, Dr. Bernstein who kindly offered to educate my future husband and who made my twin pregnancy a success (a future post), and now Dr. Cobin, who for the past 15 or so years has made me feel like an equal partner in my treatment.
So I am slowly but surely “putting myself out there.” I want more people to know what having Type 1 diabetes is like. I test my blood sugar in the middle of gym class, I take out my pump to bolus before a meal in a restaurant. I am grateful that my two nephews (on my husband’s side) with T1D are benefiting from all of the amazing technology out there that I am slowly but surely embracing.
They are not peeing in cups.