I have two daughters with Type 1 diabetes, and in my experience there’s a disconnect between what people think it’s like to have Type 1 diabetes and what it actually is like.
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’re going to be somewhere difficult to treat a low (such as a child on a school bus) keep that in mind as well. And don’t forget to pray that your pump infusion set is working and that your insulin didn’t fry in the heat. Now push go on your pump, or poke your arm with a needle and, voilà, you’re done!
A diabetes disconnect also results from confusing headlines, such as Cure for Type 1 Discovered (it’s in mice) or New Drug for Diabetes (it’s for Type 2). Many book titles are misleading as well, often using language like ‘Reversing Diabetes’ or ‘Preventing Diabetes’ while meaning Type 2 diabetes and not Type 1. Even medical journals often don’t distinguish between Type 1 and Type 2 diabetes in their titles.
Recently, I saw a friend whom I hadn’t seen for a long time. When I pulled out my daughters’ meters and lancets to check blood sugars, she said “I didn’t think you still had to do that.”
This is not the first time I’ve 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 low or high numbers and the need to confirm them, as well as the need for calibration with fingersticks.
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 ‘soft’ needles. Also the talk of pumps “instead of shots” perhaps has misled those who don’t 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.
A pediatrician with a child with diabetes told me her colleagues have no idea what it’s 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’t 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.
To make up for the diabetes disconnect in the world, I actively seek environments that focus on connection for people with diabetes. Educational diabetes conferences like the Children With Diabetes Friends For Life conference are places where everyone understands the look on your face when you are performing the complex analysis of variables listed above followed by the necessary math.
Diabetes camp is another place that can make up for some of the inequities of diabetes. My daughters may not be included in some playdates and sleepovers, but the camp camaraderie and happy charades of diabetes camp can make up for it.
And of course there is support online. Numerous blogs and cyber cartoons bring smiles and understanding to those in need. Nevertheless, a more widespread awareness of the challenges of Type 1 diabetes is still needed in my juicy opinion.