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.
Our 6 year old was just diagnosed 2 weeks ago and our 2 year old was diagnosed just shy of 15 months. This article was so true in that people think they know but really have no idea. I had well meaning relatives comment that at least my oldest was in a family with other diabetics. It broke my heart because to them it must seem easy but in a family of 4, I’m the only non-diabetic and sometimes its overwhelming. You do the carb counts and blood sugar checks with a smile because they are your kids and you… Read more »
As parents we just became aware of our 9 year old daughters T1 condition. All the symptoms were there. Tiredness, constant need to visit the toilet. Waking me up at night to drink water, more than once a night that is. Then tummy aches started. And to add to the injury, she developed a lung infection. Coughing, vomiting followed. Two courses of antibiotics and no improvement. Second opinion sought and within 5 minutes diabetes was diagnosed. It was a big shock to myself and her mother. How could we miss this. How did this happen? Because of the the timespan… Read more »
As a nursing student looking to specialize in pediatric care, it was very interesting reading about adjustments parents need to do in order to better care for a child with diabetes type 1. Sometimes in the healthcare field the focus is on treating the medical condition and symptoms; however, it is also necessary to be aware of the burden and difficulties some diseases place on the patient and their family. I also fully agree on the misconceptions about type 1 vs type 2 and many people are not aware of the differences. It was very rewarding to learn more about… Read more »
I know this post is older, but it still attracts newly diagnosed families, like us! My son was DX at age 4 and he is now 6. This post explains everything to the T! All of the emotions parents go through. I could only imagine the child. I know of ADULTS who had experiences with Type 2 Diabetes and could not even handle the symptoms. My baby is my hero, truly. Blessings to all T1D Sufferers, young and old. Hopefully one day we will get rid of this nasty disease!
I am so grateful of this post, it brought tears to my eyes within the first 30 seconds. I am a 20yr old T1 diabetic who has been living with diabetes for 12 years, and one thing that is terribly true is that no one can comprehend what highs and lows entail on ones psyche, body & soul. I constantly view people with T2 diabetes complain about various problems yet they are the same ones who refuse to take a walk or even drink a glass of water. No one could even start to fathom what I would give to… Read more »
Hey I’m a kid myself, Well more like a teenager. Im fourteen years old. When I was three I passed out in kindergarden and went to the ER straight away. I got diagnosed with diabetes type 1. Reading this made me really think about what my parants go through. Although I help them a lot because I’m old inough to understand most of it. But thanks for writing this! It made me understand so much more.
I’m from The Netherlands so I’m sorry if I spellen something wrong.
Thank you for writing this. I am a mother of a 4 yo son, who has had T1D for just over 1 1/2 years. It is so comforting to know about other people who deal with the same hardships.
Thank you so much from a mom of a Type 1 pre-teen son!! He also has thyroid problems related to his diabetes and when his doctor said he was going to hit puberty early and I was going to have a hormonal boy on my hands before I was ready, Boy was she right!!
Having been diagnosed at 22, I am so grateful that my own parents did not have to go through what you describe. I think that the parents of kids with T1D are unsung heroes. Even though I have type 1 myself, I honestly cannot imagine the fear and anxiety you must experience each day (and night). Thank you for all that you do — and I hope there is someone in your life who can give YOU a hug.
I have 2 daughters with T1D. One is too young to tell me when she has any low symptoms. It’s the worst having a very small child with T1D. They can’t help at all. The stress, anxiety, depression from managing this disease can be difficult to cope with. I always worry about them dying.