Seeing one post from a teenager just diagnosed with diabetes where their response was thankfully to be proactive in seeking out info and support, and some of the first responses I read? Unfortunately just reminded me of what a good thing it ended up being that I can't NOT seek out information on my own.
Because what I did end up getting when mine was rediagnosed while I was unconscious really was criminally inadequate. And it really could have harmed me further if I hadn't started looking for more just as soon as I was able to.
Apparently, the way to deal with somebody having been misdiagnosed and subjected to malpractice-level treatment for years completely ignoring guidelines? Is to retcon it so that they obviously knew about the actual diagnosis all along, but just Did $CONDITION wrong enough to cause themselves a crisis situation. 🤯😵💫😵
So yeah, no actual education or guidance required because the person must know this shit already! If they'd just do as they were told at some imagined point in the past and take the damn insulin they never had, surely there would have never been a problem at all.
Well, thankfully I already DID know some things (and had strong suspicions for a good while that nobody wanted to hear 🤬)--and also had the wherewithal to do research on my own for the practical stuff that I didn't know nearly enough about.
Or I might well have been dead within a few months of being set loose, from what little instructions I did get. Not even exaggerating.
I got sent off with set doses of insulin for 3 meals a day no matter what I was eating or doing, and a finger stick glucose meter with like 4 strips prescribed per day to keep this shitty Tamagotchi going. Also ended up needing to ration the fast-acting stuff toward the end of the month, until I could get the hospital-issued prescription math that just didn't math sorted out with the GP's office. That took a couple of months.
Anyone who knows anything about T1 diabetes will know just how adequate that sounds as a treatment plan.
Never spoke with an endocrinologist the whole time I lived in the UK. Maybe one cycled through at some point while I was out of it in the hospital in 2020, but I sure never saw them. T1s are automatically supposed to be referred to the local hospital's department for that, but I never was even after the emergency diagnostic retcon. That did happen in 2020, but we stayed there for nearly a year after The Crash. Nobody ever mentioned the diabetes team at any point.
Joke's on them though, with how I have been managing basically as soon as I got the appropriate tools to do so. I'm really not that easy to kill off.
Now I just keep numbers going that have had the last two endos here running more tests to make sure I'm really T1 and do need insulin. 😱
(That would be a resounding YES, btw. My beta cells are pining for the fjords, and have been for a good long while. Enough were stubborn that I somehow didn't completely collapse until 2020, but there is absolutely no question that my body needs the supplemental insulin to keep going. At least these folks are indeed ordering testing, if they are in any doubt.)
Once I got to Sweden, I must have seemed like I had my shit together well enough--and was frankly plenty old enough--that nobody has seemed to think that I really needed much guidance. Though they do seem much better set up locally for people who do, and, like, actually pretty competent overall.
I don't particularly want or need any particular professional help beyond keeping the necessary prescriptions coming, and keeping tabs on stuff like my thyroid and kidney function. Just as glad that they're mostly willing to let me get on with it in a less-negligent seeming way. If I do need some help, I can ask and they're actually reachable.
Yeah, that turned pretty ranty. But it apparently took me over 5 years to really process some stuff. It was just So Much, all smashed together.
And I was freshly struck by the sheer audacity of that retcon mindfuckery to avoid any accountability, in contrast to some (very reasonable!) expectations and assumptions about how a new diagnosis should work.
I am very glad that OP over there probably can expect much better with their new diagnosis at 16.