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I have two daughters with Type 1 diabetes, and in my experience there’s a disconnect between what people think it\u2019s like to have Type 1 diabetes and what it actually is like.<\/p>\n
Many people are not aware of all the variables that come into play to control blood sugars. Some people think you take your medicine and you get a steady blood glucose of 120. In reality, you have to guess what the dose of your insulin is based on your guess of what the carbs in the food are based on what your guess is of the portion of food that will be eaten. Plus, you must take into account your guess of the amount of fat and protein in the food, and whether one has just exercised or is about to exercise (and how much exertion that exercise will involve). If you are about to go to sleep that must be taken into account, or if you\u2019re going to be somewhere difficult to treat a low (such as a child on a school bus) keep that in mind as well.\u00a0 And don\u2019t forget to pray that your pump infusion set is working and that your insulin didn\u2019t fry in the heat. Now push go on your pump, or poke your arm with a needle and, voil\u00e0, you’re done!<\/p>\n
A diabetes disconnect also results from confusing headlines, such as Cure for Type 1 Discovered<\/em> (it\u2019s in mice) or New Drug for Diabetes<\/em> (it’s for Type 2). Many book titles are misleading as well, often using language like \u2018Reversing Diabetes\u2019 or \u2018Preventing Diabetes\u2019 while meaning Type 2 diabetes and not Type 1. Even medical journals often don\u2019t distinguish between Type 1 and Type 2 diabetes in their titles.<\/p>\n Recently, I saw a friend whom I hadn\u2019t seen for a long time. When I pulled out my daughters\u2019 meters and lancets to check blood sugars, she said \u201cI didn\u2019t think you still had to do that.\u201d<\/p>\n This is not the first time I\u2019ve heard someone say this. People seem to interpret the advent of continuous glucose monitoring systems (CGMS) as the end of fingersticks. Not only were we on a break from the CGMS, but the CGMSs can lead to more fingersticks due to the alarms for\u00a0low or high numbers\u00a0and the need to confirm them, as well as the need for calibration with fingersticks.<\/p>\n Another time an acquaintance told me that when she grew up her relative had to check his blood sugar with fingersticks. She sincerely thought that blood sugar testing no longer required finger pricks. Perhaps advertising had confused her, as some ads seem to gloss over that fact that you still need to prick your finger, and some emphasize \u2018soft\u2019 needles. Also the talk of pumps \u201cinstead of shots\u201d perhaps has misled those who don\u2019t know that the pump still requires needle insertions and that shots are still necessary when high blood sugars develop from pump sites malfunctions or other problems.<\/p>\n A pediatrician with a child with diabetes told me her colleagues have no idea what it\u2019s really like to have a child with Type 1 diabetes. There is a lot of talk about blood sugar levels and the threat of complications, but I hear less on the day to day side effects of high and low blood sugars, such as headaches, stomachaches or feeling shaky, that children often cannot put into words, but suffer from nonetheless. This is apart from the amount of work that diabetes care involves, such as testing blood sugar levels throughout the day and night, giving insulin for meals, snacks and bites, always counting (or guessing) carbs, checking on daily supplies, carrying diabetes bags, filling prescriptions, downloading pumps, visiting the doctor, and the list goes on and on, encompassing every single day and night. In addition, I don\u2019t think people are typically aware of the need for the continuous infusion of basal insulin, and that this rate of delivery needs to be adjusted regularly due to physical growth or changes in routine.<\/p>\n