I recently just passed my one year diaversary, one year since I was diagnosed with Type 1 Diabetes. What a year it has been… Diabetes just wasn’t something I thought of much before diagnosis. It is interesting to see how I’ve come to start forming opinions over something I have only known for a short while.
It’s also interesting to watch peoples faces as I explain things. At a restaurant I might get “Is the food ok? Is there something wrong?”, “Oh no no, I have diabetes. I’m just waiting for my insulin.” Sometimes I get a knowing nod in return, sometimes a concerned look, sometimes a confused glance that says ‘but you’re skinny?’ The wife is often quite good at jumping in and clarifying “He has type 1 diabetes, that’s the autoimmune one.”
I didn’t choose this disease, it’s not some moral failing or punishment for some sin. A heroin abuser wouldn’t look at me and think “he’s overburdened with ‘mitochondrial challenges’.” I am a simple stew, a pinch of bad DNA and a mysterious trigger swirled together.
So yes, “I have diabetes.” I’m a person with a disease. Type 1 diabetes is absolute shit. I have a pretty vivid memory a couple months into diagnosis meeting someone with Type 1 and asking them “how is it living with Type 1?”. “Oh it’s hell, it’s the absolute worst.” Well that sounds a bit dramatic… Yeah, later on driving home in the car Sierra and I agreed, there’s nothing you can’t do while having Type 1. They’re just being dramatic. Little did I know that I would later come to completely agree with this stranger 🤣. Type 1 diabetes is absolute shit. It’s not that I want your pity, or that I want you to look at me and think “that man has a terrible life”. No, my life is good, my family is great. I do all kinds of amazing things. Life is good. Type 1 diabetes is absolute shit. As my endocrinologist told me recently
(summarized) There is no disease that exists where we ask more from the patient than T1D. Someone with a cancer diagnosis is told to take this pill or do this treatment but after that happens they don’t have to think about treatment for the rest of the day or week. For people with T1D we’re asking them to perform the complex job of a pancreas by injecting insulin manually a few times a day. That is a very difficult job and it invades every moment of their life.
I do find myself sometimes envying those that were diagnosed with T1D quite young. Some of them don’t even know a different life… a life without diabetes. A life before (gestures to everything) all this.
Lately people-first language is something I’ve been thinking about. This is the modern (and I believe important) pattern of describing what a person “has” rather than what a person “is”. So in this case I “have” diabetes, I am not “a diabetic”. The idea here being that I’m a person first, and that my identity is not defined by diabetes. I can reinforce my other humanly traits and not make “diabetes” the primary essence of who I am.
Look I think people-first language is really important but it does almost require a few key things 1) that diabetes is something negative or that others will have preconceptions about it that are negative and 2) that I should distance myself from it.
I mean, my therapist is probably right. I should probably continue saying “I have diabetes.” I mean Type 1 diabetes is absolute shit. It’s the worst! 😆 but it’s interesting because a year has passed and I’ve met a lot of people with Type 1 diabetes. Let me tell you, every single one of them is awesome.
The community that surrounds Type 1 Diabetes is crucial. They are the only ones that will understand this disease. They are the only ones that can actually reassure you “That GP is an idiot.”, “I can’t believe (friend/family member) said that to you, what a horrible thing to say.” The community is amazing. Everyone wants everyone else to succeed. We’ve got teenagers fighting with hormones, and kids falling off bikes, and train conductors, and airline pilots, and professional athletes, and teachers, and bus drivers, and dog walkers, and stand-up comedians, and West End actors, and mountaineers and they all are in this together. They all have been and are willing to spend a few minutes to tell me “It’s going to be ok”, “You’re doing great”, “This is absolute shit”. The people in this community are good people. Really good people.
So I’m conflicted because when I think of someone with Type 1 Diabetes, I only have positive things in my head. Yes they face a challenge, but they are so willing to stop and smell the roses and chat and commiserate, because by giving a little of themselves now someone will return the favor in the future. And when we get together in the pub and an alarm blares and someone mutters “oh for fucks sake”, we know exactly how that feels. So I don’t know, maybe sometimes in a conversation I will answer “I’m a diabetic” because I don’t mind being labeled when the people in this community are so damn great. (but Type 1 diabetes is absolute shit)