Diaversary – A bittersweet story
It has been 15 years, almost to the day, that I was diagnosed with type 1 diabetes mellitus at 19 years old.
It came as a shock to me, obviously. I lived a relatively healthy life, played tennis and volleyball multiple times a week but still fate decided my body would find it highly amusing to go and attack it’s internal functions. An underlying disease I was told, most likely inherited from my long passed away fathers side of the family. One thing was for sure though, I had to live with the fact, starting that Monday morning, I would never have the same life again. From that moment on, I was stricken by a chronic auto immune disease.
I won’t go into detail on how diabetes works. Google is your friend and there are people way better suited to explain the intricacies of T1D, but I would rather tell you about the (unseen) impact it has had in daily life. It started with insulin shots four times a day, finger pricks to test blood sugar levels, feeling like absolute cow manure because of highs, acting like a man on drugs due to dangerous ketone levels and low sugars… the list goes on and on. As I’m writing this I am hooked up on an insulin pump, 365 days a year, 7 days a week, 24 hours a day. I’ve got an NFC scannable device planted in my arm that can be read rather quickly to find out an indication of my blood sugar levels at that very moment. The latter is not connected to the former though (because of insurance coverage – yay western capitalism)
“The dread of knowing you’re fighting to keep your eyesight, your limbs, your vital organs working properly. It’s not as easy to live with as many think and it’s often downplayed to the point of ridicule”
In the middle picture in the header above this article you can see a small part of the collection of supplies I have used over the years. There’s a whole cupboard full of this stuff, with more to come, not to mention the thousands and thousands of dollars/euros/pounds/yen/etc this little joke has cost me and everyone paying taxes over the years. This doesn’t even start to represent the struggles, the calculations, the preparations, the hospital visits every 3 to 6 months. The dread of knowing you’re fighting to keep your eyesight, your limbs, your vital organs working properly. It’s not as easy to live with as many think and it’s often downplayed to the point of ridicule.
NONE THE WISER
The most, for lack of a better word, annoying part of suffering from T1D is the massive amount of misunderstanding that goes around. Both in professional and private situations, I might add. I can recall my ex-girlfriend’s mother asking me to take my insulin shots during the family Christmas dinner out in the hallway because she didn’t want to make the visiting family uncomfortable. During an internship I was asked the same thing, if it was possible to leave for a bit so no one would see me making sure I didn’t kick the proverbial bucket. Even an old friend got mad at me for (mind you, very subtly) taking my insulin in a restaurant while the people she was concerned with had no such regard for our well-being with their offspring running around like fools during dinner time.
These are isolated incidents though. Most of the time you hear common remarks like “can’t you eat any sugar?” – yes I can, “I know someone with diabetes too, how cool is that?” – good for you, “but you don’t even look fat” – different kind of diabetes, “if you drink goats milk combined with west-African swallow poo you’ll get cured” – No I won’t, but thanks for the input… it’s a long list. I don’t blame people for not knowing about diabetes much (hell, I don’t know anything about asthma or Crohn’s disease either so would be hypocritical for me to go on a tantrum), but it does get tedious. Let’s call this part an open invitation and please put the questions you have about diabetes, specifically aimed at the day to day goings on, in the comments below, I’ll gladly answer them.
HIGHS AND LOWS
Yes, diabetes sucks. And it will suck for the rest of my life. I will always have to deal with high healthcare costs, having to take precautions at any step and so on. As I’m writing this it’s the middle of July where many, despite an ongoing pandemic, are preparing to go abroad for a few moments. I can too. I will be somewhere in between Nottingham and Birmingham most likely for about a week. But I have to make sure to pack extra insulin. Make sure it’s cooled. Make sure I pack extra infusion sets, sensors and test strips. I have to make sure I bring a doctors note so I won’t get… arrested or something. I have to bring extra sugars and a glucagon pen so I don’t die because of an unforseen Hypo. I have to check what the rules and regulations are in the country I’m going to and if I can get emergency supplies there. It’s a lot of small things that eventually come naturally but still are a lot of hassle on top the already stressful holiday preparations.
“I learned how to take responsibility and know what it’s like to live with a chronic illness. For me it even became a little bit of an identity”.
Despite this fun but bitter little rant, I want to end on a high note and hopefully one that will inspire type 1 diabetics around the world. Sure you feel like a cyborg with the scanners and insulin injection pumps in your body 24/7. And yes people ask silly questions a lot. Yes, my insulin pump is very visible and the little white plate on my arm is always present when I wear a short sleeve shirt. But you can use it. I do (or try anyway). You learn a lot from having diabetes. I learned how to take responsibility and know what it’s like to live with a chronic illness. For me it even became a little bit of an identity. I’m not ashamed like a lot of other Type 1’s to be seen as a patient. I can’t help I’ve got this disease so I’m not going to apologise for it. I stand on that stage and sing my heart out with Den Purls with my pump hanging from my jeans. I take pride in being the odd one out and turned it into a brand (Suikervrij Design means Sugarfree Design, a cheeky nod to this very mindset).
I probably will forever be linked to hospital visits, strange behaviour, hormonal mood swings, weight, diet and more because of my diabetes. But for me it’s a bittersweet story. A story that honestly should be heard and understood by more people. Now there’s a mission statement for you.