I have lived with type 1 diabetes for nearly 15 years. This disease, which is largely misunderstood by the public, is a chronic illness that can feel like a full-time job. For us type 1 diabetics, it’s a 24/7 gig that consists of constantly monitoring blood glucose levels, administering insulin injections, and having to worry about how diet, exercise, and many other factors affect our health now and in the future. No matter what I do, my type 1 diabetes is not going away.
Experiencing low blood sugar, dealing with the cost of medication, and managing stress and anxious feelings related to diabetes are bummer side effects of the condition that we are forced to live with. What I refuse to live with, however, is any stigma attached to being diabetic.
Dealing with type 1 diabetes (orany type of diabetes) is exhausting in many ways, especially when you have to deal with some people's preconceived notions of the disease.
First, I want to clarify what type 1 diabetes really is, as it’s often misunderstood. Type 1 diabetes is an autoimmune condition in which the pancreas can’t produce insulin, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) says.
Insulin is a hormone that the body needs to allow sugar (also known as glucose) to enter your cells. Glucose is the body’s main source of energy, and energy allows you to live your life—to walk, to breath, to talk, to move. So you need it to reach your cells and tissues. Therefore, when the pancreas doesn’t produce substantial (or any) insulin and glucose remains in your blood, unable to enter your cells, you end up with high blood glucose levels (hyperglycemia); this comes with all sorts of health consequences. With type 1 diabetes, I have to inject insulin into my body several times a day in order to do the work my pancreas cannot.
When my blood glucose levels are high, I am fatigued and weak. My head pounds, my mouth is dry, and I am thirstier than you could ever believe. Having to inject my own insulin means I can also face low glucose levels (or hypoglycemia) at times. The worst part of having low blood sugar is scary, extreme full-body weakness. My condition can lead to future health problems, too: Type 1 diabetics worry about complications including heart disease, eye damage, and kidney damage.
Another one of the biggest struggles I, and many people like me, face with type 1 diabetes is how to handle stereotypes and misconceptions associated with the disease. So, to help you understand how to better communicate with people in your life who may have type 1 diabetes, here’s a list of things you probably shouldn't say to us:
Don’t say: “Did you get that from eating too much sugar?”
For the record, neither type 1 or type 2 diabetes are caused by eating too much sugar. Let’s go over type 1 diabetes first: It’s not entirely clear what causes the condition, but it’s thought that it happens when the immune system wrongly attacks the insulin-producing cells in the pancreas. This causes damage and makes the pancreas unable to properly produce insulin. Type 1 also may have a genetic component.
So, not only is this comment incorrect (and hurtful), it also perpetuates a harmful stereotype about type 2 diabetes. Sugar doesn't cause type 2 diabetes either; this is a diabetes myth that needs to disappear. Eating a diet high in calories (including sugar) may influence a person’s body composition, and weight and body fat can potentially play a role in whether someone develops type 2 diabetes (although this is a complicated relationship, which you can read more about here).
Just like type 1, type 2 diabetes is a multi-faceted, complicated condition. Diet (and therefore sugar) is only one, indirect factor of it. Believing that either type of diabetes is a result of simply eating too many donuts or candy bars is offensive and an oversimplification of two very complex diseases.
Don’t say: “My friend’s sister’s cousin’s mother-in-law has diabetes, so I totally get what you’re going through.”
No, you don’t. Maybe your friend’s sister’s cousin’s mother-in-law gets it, but until you have had to wake up in the middle of the night with low blood sugar, weak arms and legs, your heart pounding, slinking down to the refrigerator in a full-on sweat bubble while the rest of the people in your house are sound asleep, you can’t possibly understand what it’s like. When someone says this to me, they’re minimizing my experience with this disease.
Don’t get me wrong, I can appreciate someone trying to relate to me by mentioning someone in their life who specifically has type 1. But a better way to make a comment like this, if you must, is to say, “I know someone with type 1, but I’m really interested to hear about your experience with it if you’re comfortable sharing.” Then, I’m happy to share some of my experience, and you can better support your friend’s sister’s cousin’s mother-in-law, too.
Don’t say: “Can you even eat that?”
The only thing worse than hearing this question is hearing it just as I’m about to pop food in my mouth. It’s embarrassing. I am an adult, so please trust that I can make my own food choices and that I already understand the intersection of food and diet and my health condition.
The truth is, a person with type 1 diabetes can generally eat what they want as long as they understand their carbohydrate-to-insulin ratio (in other words, how much insulin I need to take per serving of carbohydrate). This might be a different story for a young person who is newly diagnosed, who may need to work with their guardians and doctors to navigate their diet and get the hang of their insulin therapy.
But at my age, and with my experience, I can eat what I want safely, so you don’t have to ask.
Don’t say: “If you go on [insert fad diet here] you can reverse your diabetes.”
I can’t tell you the number of times a person has told me to try the keto diet, or become vegan, or drink some special shake from an obscure website, in order to “cure” my diabetes. While I have absolutely nothing against any of these diet choices (reminder: what you eat is nobody’s business), these comments hurt me because when you say this, it makes me feel like you think my diabetes can easily go away.
There is no cure for type 1 diabetes, but nine times out of 10, a person will argue with me about why I’m wrong and attempt to convince me that some miracle diet is the secret I’m missing out on. Nothing I eat or don’t eat will ever get my pancreas to produce insulin again—period.
Don’t say: “Are you seriously going to do that insulin thing here?! Gross.”
I’ve had some pretty rude reactions from people in public places when I’ve checked my blood glucose levels or injected insulin. But, please remember, insulin therapy is the only treatment for type 1 diabetes. It can be a tedious and meticulous process to fine-tune treatment for your body and stay on top your insulin therapy to avoid serious side effects. I can’t go very many hours without an insulin injection, so I unfortunately can’t plan my treatment around your squeamishness.
If the sight of a minuscule amount of blood (which happens from checking blood glucose levels) bothers you in any way, then please just don’t watch.
It’s worth pointing out that some people with type 1 diabetes use an insulin pump that is attached directly to their body. I wore one for 10 years and people were definitely curious about it; some people even put me in an awkward position when they demanded I lift my shirt so they could see exactly how it was attached to me. I understand that people are curious, but it’s important to also be respectful. These are pieces of medical equipment that some diabetics have to carry around with them 24 hours a day, because it literally keeps them alive.
Despite some annoying comments here and there, I have also had the privilege of having a lot of supportive people in my life, too.
My family and friends have helped me manage a lot of challenges, and I am so grateful to them for that. They don’t make me feel different, in large part because they avoid these types of comments, accept that I will do my insulin therapy whenever and wherever I choose, and also just by remaining kind and considerate in general when it comes to my condition.
So as for what you should say to us? Simply asking, “What is it like to have type 1 diabetes?” or “What’s that you’re doing there?” (when I’m checking my blood glucose levels or measuring out my insulin) is perfectly okay. I’m always happy to describe my condition or walk someone through my treatment process if they are curious and willing to learn.