By: Mason Mattu, Section Editor
In September 2019, I lay in a hospital bed at BC Children’s Hospital. A nurse hovered over me, poking my finger with a device I had never seen before. I winced. What was going on? What was happening to me? I wanted to ask many questions, but my throat was so dry it hurt to speak. The fluorescent lighting, beeping monitors, and hospital staff whispers around me converged into one panicked environment.
All summer long, I was frequently drinking water and feeling excessively thirsty. Over the course of that summer, I had lost so much weight that I don’t even recognize myself when looking back at photos. Hours before going to the hospital, I had run out of my piano teacher’s house, feeling as if I was about to vomit. That night, my mom, who has experience helping my diabetic uncle, tested my blood sugar with his monitor and saw it was abnormally high.
That night, I was told I have type 1 diabetes (T1D). I felt as though I was a stranger in my own body. Apparently, my body had decided to fight with my pancreas, destroying cells that make insulin in the process. Insulin is a hormone crucial for managing blood sugar and turning food into energy.
Suddenly, my life became different than most other 13-year-olds. From giving an insulin shot whenever I ate something, to counting the amount of carbohydrates in a meal to calculate dosages, all the while making sure my blood sugars weren’t high — my family and I were tasked with a full-time job that no one should have to be tasked with.
For the first few years after my diagnosis, I was afraid to admit I had T1D. I’d prick my finger to test my blood sugar underneath the table. I’d leave class early to give a shot before lunch.
The comments from others definitely didn’t help. “What’s wrong with you? Why do you have devices on your arm like a cyborg?” some would ask. “Maybe you shouldn’t have eaten so much sugar!” others would say. Did they know T1D isn’t brought on by diet, but is entirely predetermined by my genetics?
Did they know the machines that made me look like a “cyborg” were crucial for my survival?
The comments didn’t stop when I became an adult. If anything, I noticed the same degrading questions, just posed in a more condescending way. There’s nothing wrong with being curious. I am more than happy to tell others about diabetes as long as they check preconceptions and judgments at the door, and ask questions respectfully.
It is my hope that by showing you some of the questions I’ve been asked as a type 1 diabetic, you will gain a better understanding of what it’s like to live with this disability.
“But you don’t look fat! How come you’re diabetic?”
A better way of asking: Don’t ask this at all!
This is an incredibly strange observation to make about anyone! Please don’t say this. First of all, there are two types of diabetes: type 1 and type 2. Type 1 diabetes (the one I have) is not brought on by diet at all. Type 2 diabetes, when insulin cells don’t stop completely as they do in type 1, is sometimes linked to lifestyle choices. However, anyone could get type 2, regardless of their weight or lifestyle. Making assumptions about someone’s health feeds into stereotypes and shows that you’re ignorant, not that you’re curious. So, just stop.
“What are those weird things on your arm and stomach?”
A better way of asking: How do these devices help you?
I’m at the pool. Just chillaxing. Why does someone need to comment on my medical devices and point them out?
I wear two medical devices at all times. The first one is a Dexcom G6, a type of continuous glucose monitor. This device allows me to see what my blood sugar is at all times via an app on my phone — without constant pricking. On my stomach, I wear an insulin pump. This is where I enter my carbs and blood sugar, and press a button to give insulin. It’s connected to my body via a wired tube.
Does it get annoying wearing these devices all the time? Yes. Sometimes, my pump tube gets caught on a drawer handle and I have to reattach it with a new tubing and cannula set. Sometimes, I wish I could go into a pool without disconnecting a pump and putting a clip over the pump site on my body to protect it from water. But these devices have saved my life.
I understand why people would be curious. However, would you ask someone who you just met why they have glasses? Or point out that they have braces? Asking questions is fine, but not when you first meet someone. My medical devices are not an icebreaker; they are something deeply personal to me. I am happy to field questions after we start chatting, but not if it is the first thing you say to me.
Another reason for not pointing out medical devices right away is due to the comfort levels of different people. Some might outwardly tell you what it is; others may feel shy, nervous, or even angry. Like anything, you should practise sensitivity. Let the person bring it up in casual conversation, or when they bring up that they have T1D. Then, bring your curiosity to the table.
“Are you counting your calories?”
A better way of asking: Wow that’s a lot of math! What are you up to?
Imagine this. You’re at a local coffee shop and run into an acquaintance who knows you have T1D. If I’m drinking, let’s say, a mango smoothie, I’m going to have to give insulin for it. Period. No, I’m not counting my calories. No, I’m not starving myself. I’m going online to a nutrition website to count the carbohydrates!
Diabetics have to give insulin shots based on how many carbs are in a drink or meal. The amount of insulin I take is based on my carb ratio (the number of carbohydrates in one gram of insulin). I have to look up the carbohydrate content online, or make an educated guess if none is available. At home, this also means using scales to precisely measure how many carbs I will be consuming so I can give insulin for it.
So, for that mango smoothie, if it has 50 carbs in it, I’ll have to give around 10 units of insulin for it (plus more if my blood sugar is high!).
“Should you be eating that?”
A better way of asking: How do you manage what you eat?
I’ve never really liked sugar. I try to eat as few ultra-processed foods as possible.
I do enjoy the occasional ice cream cone. If you see me eating one, don’t automatically assume I am going to drop dead and turn to ashes.
Type 1 diabetics can still eat sugared food — it’s just all about the timing and what our blood sugar is. If my blood sugar is at a good level and I’m in the mood for a sweet treat, then I’ll give insulin.
Living with T1D doesn’t mean eliminating treats; it just means managing them.
“Shouldn’t you be grateful that it’s only diabetes? At least it isn’t (insert another disease here)!”
A better way of framing: Tell me about your lived experiences.
This is actually a very common question diabetics get asked, especially when we are first diagnosed.
Living with any type of chronic illness isn’t easy. Yes, I recognize that being diagnosed with a more debilitating condition is definitely a more gruelling experience for someone. However, comparing disabilities to each other only erases the lived experience of someone living with that disability. For me, asking this question erases the hardships I experience and those of others with disabilities. Comparison is never the way to go when seeking to understand someone. Instead, ask about their lived experiences.
I hope this guide was of use to you and that I didn’t come across as being mean in any way. Some type 1 diabetics are comfortable answering questions — as long as you’re being respectful. However, not everyone has the same boundaries and it is crucial that you learn to respect them. There’s a difference between curiosity and shaming.
Six years after being diagnosed with type 1 diabetes, I still feel uncomfortable with this condition. It is, of course, a full-time job in and of itself. By being respectful when communicating about type 1 with me and others, you are making it clear to us that our voices matter.
