Diabetes is a hot mess.
And for a long time, I have allowed that mess to isolate me. A more accurate statment is that I isolated myself because of the mess.
The disease not only makes you a hot mess, at times, but is so misunderstood it itself is also a disaster. And it can be an exhausting thing to explain to people.
They (a general term I’m bestowing upon the medical community) now say there may be up to five different types of Diabetes. Though there are only three truly recognized forms of the disease: Type 1, Type 2, Gestational. The remaining two types fall under pre-existing types and are not formally acknowledged by associations like Diabetes Canada and the like.
There are also many schools of thought regarding Diabetes’ nomenclature.
A lot of people believe there should be different names for the different types; Type 1 Diabetes should be called something entirely different than Type 2 Diabetes – there should be no types. The idea is that either one or the other would be called Diabetes. Kind of like Voldemort and Harry Potter, neither can live while the other survives.
Sometimes I fall in to that school of thought…
It can be quite frustrating to have people react to my I’m a Type 1 Diabetic statement with the following comments:
– You don’t look like you have Diabetes! Exactly what am I supposed to look like? Wilford Brimley?
– You’re too young to have Diabetes! But they can diagnosis Type 1 a few weeks after birth…
– You’re not overweight, how can you have Diabetes!?!? I do not have Type 1 Diabetes because of my weight, my pancreas is broken. End of.
– You can’t eat that, right? Wrong. If I bolus correctly I can absolutely have that. Thanks TIPS.
And there are more terrible comments that have come from people. But those, for me, are the most common. And they are disappointing (and ignorant!) at best. Hurtful at times. And generally a sad statement on the world’s understanding of the disease.
Then there are the reactions to the devices I use. They can be and have been anything from sympathetic to overly dramatic, and are not limited to the following:
– That one of those high-tech nicotine things? First of all, what is a high-tech nicotine thing? Secondly, no. It’s my FreeStyle Libre. Monitors my glucose levels.
– OMG. You have to prick your finger and test your blood!?!? Yes. It is called a blood glucose test. It requires my blood in order to tell me where my blood glucose levels are.
– OMG, you have to inject yourself to eat? I could NEVER do that. Yes I do. And yes you would. Because if you didn’t you would die. So…
– There’s a girl in the bathroom doing drugs!! Three people from the restaurant rushed in as I was injecting myself with insulin, then the manager asked me to leave. And I did. After bolusing and without my lunch…
I do not currently have an insulin pump so I cannot reflect on the comments pumpers receive. Though I have heard of some equally unfavourable things being said…perhaps, once I receive my pump (and some of those comments) I will be able to update this post…
Then there are the reactions to my highs and lows. Or hyper and hypo events. To speak proper Diabetes. These comments have come from both those who understand those events and those who do not:
– Why are you having a juice box if you can’t have juice? First of all, we already covered the whole “you can’t eat that” thing. Secondly, my glucose levels are LOW. I require sugar to raise those levels. You know, so I don’t die.
– So, now that you’re a normal number, you’re fine, right? Yes and no. I have experienced terribly awful hypo events that have left me feeling unwell for days. I have also experienced hypo events that I have immediately bounced back from as if it never happened. I have also experienced hyper events that have left me feeling like shit. Even after I’ve corrected and reduced my glucose levels.
– I don’t understand, you were fine and now you’re low? You didn’t do anything! I know, welcome to my world. Welcome to Type 1 Diabetes. Where extremely careful management can easily be thrown out the window for no reason whatsoever. Other than you have Type 1 Diabetes and that’s just how it rolls sometimes.
– I don’t understand, you were fine and now you’re high? See above. The same applies.
My diabetes is not your grandmother’s diabetes. It is not your best friend’s cousin’s diabetes. And it is not your uncle’s friend’s nephew’s teacher’s dog’s diabetes either. While we may all have Type 1 Diabetes mi diabetes no es tu diabetes.
This was never more clear for me than when I recently went to camp with 100+ other adult Type 1s. I watched others experience lows just like me and endure highs just like me. I also watched others have completely different experiences and reactions to both.
While there was a common thread between us all, how we weaved with it varied greatly.
This was once again brought to my attention when I had a most lovely coffee date with a fellow camper. That’s right, the girl that was once (and maybe still is) terrified (and possibly incapable) of making friends has made a friend! And she is a most wonderful, beautiful human being.
Promises were fulfilled when we met on a cold, dreary night earlier this week. We had the most lovely chat, in some cozy chairs, over a couple of warm, unsweetened Matcha Green Tea Lattes.
We sat, shared and laughed together. Scanned our arms, beeped and checked our glucose levels together. It was truly a most magical experience for me. Truth be told, I’m still happily floating along because of it.
My two decades of Type 1 isolation has burst wide open in the last 18 months…
First I made contact with my lovely friend (and now extended family!) in Wales (I still can’t believe we met her, and her partner, in person – what an experience that was!), then all those campers! Now I’m having coffee met-ups with fellow Type 1 Warriors and making plans to meet more for future dates. Whaaaaat!?!?!
Diabetes might be a hot mess. It might super suck sometimes. But I have met the most wonderful people because of Type 1, fellow warriors and their supporters, as well as those in the medical field.
I have had some (several) unsavory encounters with people too.
But even those experiences brought something positive to me.
Because I refuse to allow negativity to reign. Even chin deep in that hot mess.