Today's prompt: Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.
I've been pondering this topic for a few days, because there are plenty of diabetes-related issues that I am pretty passionate about, and have ranted extensively about - a small sampling includes, but is not limited to: diabetes myths (no, I didn't have too much sugar as a child, yes I can eat that...); pump access (while I don't believe everyone will get on with a pump, I believe everyone should be given the option); CGM access (ditto); and the word "compliance" (grrrrr...). I don't really formally advocate for anything, but I was trying to think of something that I, personally, feel is important, and what it came down to is this:
I think that education is one of the most important things that a person with diabetes needs in order to best manage it - we have a condition that requires daily decision making in order to prevent it from kicking us in the ass (and despite our best efforts sometimes it does that anyway!) How can you make the best decisions if you're not informed? I really feel that everyone who has diabetes, or cares for someone with diabetes should have access to an education course at diagnosis, and that information should be updated as necessary.
I think that everyone should be taught carb counting, and how to adjust their insulin if necessary. I think that everyone should be taught how different factors can affect your blood glucose levels - alcohol, exercise, hormones, stress etc. How these can make your blood sugars go up or down, and how to help manage the changes. What to do if you're sick, or if you're hypo.
I appreciate that when you're newly diagnosed this is a huge amount of information to take in, and I'm not suggesting that a newly diagnosed person gets handed a huge folder with all of this (!) but I do think people should be made aware that education is available, and encouraged to ask questions and find out more. And I think education is just as important when you've been diagnosed for 10 years, 20 years, 50 years. Information changes, medication changes, better ways become apparent, and newer technology makes life more manageable.
One of the reasons that I feels so strongly about it is that I was that uneducated person for a long time. I was diagnosed in 1988. I was put onto Mixtard, taught to carb count, how to test my blood sugar and inject, and that for exercise I should have some glucose tabs before it. And for almost 20 years, that was it. The information was never updated, no-one ever told me about things like MDI or how things like hormones might affect my BGs. Instead, I went on doing the same things, even when those things were clearly no longer working, because I wasn't aware there might be other ways of doing things - I'd assumed (silly me!) that if there were new things that I should know, that my doctors would tell me. I went to clinic, got told off for HbA1cs that were too high, and sent away again. Rinse and repeat for long enough and you hit burnout and stop caring (or at least I did anyway).
Fast forward to 2006, I moved to Cambridge, learned about MDI, and found the DOC. The DOC was a revelation for me, in many ways, but especially for opening my eyes to new information and better ways of doing things. The idea that I could adjust my insulin, ways of dealing with exercise, insulin pumps, and so much more! This was all new to me, and it sparked a fire to become so much more proactive about my diabetes management, with obvious results in my blood glucose levels and HbA1cs. It taught me to question my doctors, to research for myself, and to learn enough about my diabetes that I could manage it (mostly!) successfully by myself. I try and help, and pay some of that back, by sharing that knowledge wherever I can, but it never feels like enough.
I see people on twitter and facebook, in forums and mailing lists, and in RL as well, who have such little knowledge about their diabetes that I find it terrifying. I don't blame them - I was much the same in some ways - but when you find someone who's on a pump who has never been told about ketones, or someone who has never been told the importance of matching carbs and insulin, or even that you have to worry about more than just how much sugar is in something, it's scary. I worry for them, and I despair at the thought that there are HCPs out there who think that it's perfectly acceptable to let someone go with such a potentially dangerous thing as insulin with no education - or who blame the diabetic for out of range results without helping to understand ways of improving things. There's no excuse for that in my book, and it's one of the reasons that I think the DOC is so fantastic - because it helps to provide that education, even when the professionals who should be doing it are failing so miserably.