The most important thing to do as a diabetic – featuring my diagnosis story

Looking back at the day I was diagnosed, there is one thing that stands out most for me and that is my frustration with the hospital staff and the way they approached me as a newly diagnosed person with diabetes.

Some doctors were nice, telling me how “you can lead a normal life with diabetes” and that this illness is “no big deal” – however without giving me any real information. So, there I was, sitting on a white hospital bed, IV in arm and completely clueless. I didn’t even have any idea why I had to stay in the hospital and why this could not be dealt with at home and I had no idea what the numbers meant that the nurses told me after pricking my finger. Everyone just told me that I would receive all the information once a doctor comes in, but all the doctors kept repeating was that “if managed well, diabetes is no big deal”.

Type Two? Type One? Who knows!

I want to add to this that during my stay at the hospital, I wasn’t diagnosed as a Type One or Two immediately (even though the sign were fairly obvious). They had sent my blood to a lab and decided to wait with any proper decision for the results to come back. I later discovered that they decided to treat me as like a mixture of Type Two and One in the sense that the basal insulin I received was for Type Two and the mealtime insulin was for Type One. Looking at this now with all the knowledge I have of diabetes, the decision they made is still very confusing. I think the only way I could have been mistaken for Type Two was because I was 31 and therefore a bit older than the usual age.

Anyway, the next day, I was put in a room together with a couple of Type 2 diabetics and I received a lesson about nutrition from one of the nutritionists that worked for the hospital. I was told that I now needed to count the carbs and watch my cholesterol and my weight (which is ridiculous because I was on the verge of being underweight).

So, this was the afternoon of the second day in the hospital and I still had no idea what to do or how to do anything. The next day, a Friday, I was also told by the nurses that there would be no doctors and no further lessons on the weekend and that basically I was supposed to wait until the following Tuesday to receive more information.

Up until that point, I did what I was being told, I waited I listened, I was patient. I didn’t say anything when my BG went down to 80 during my first night there (when it previously was above 1200) because they put a lot of insulin in my body.

I’m a reckless b*tch

Because the hospital I stayed at did not have any internet and there was no way for me to do any research there, I did something very reckless and I would not ever recommend to anyone doing this (DON’T DO THIS) but I did it anyways because I was desperate. Using the last bit of data on my phone I googled “how to treat a low blood sugar”, I then got some glucose tabs from the hospital kiosk, I checked myself out for the afternoon and took the bus to the local library. Once arrived, I borrowed all the books on Diabetes that I could find and brought them back to the hospital for a little weekend reading session.

Finally, I had all the information I needed: I learned what a bolus is and that there is a time window of when to inject insulin and that there is a carb ratio too that you have to figure out first. I learned about the two different types of insulin and why it’s necessary to have them. I learned all the important words people with diabetes need to know and even some more specific information on how many carbs to take to treat a hypo. And while learning all the technical things about managing diabetes is very important, I believe this experience has taught me the most important thing of all, right from the start: Taking charge of my own health. All the sitting and passive waiting, the pity from doctors and nurses built up a very toxic situation that did not help me as a newly diagnosed. Let me give you one more example for this:

During my hospital stay, a doctor came to chat to me and in an effort to make small talk, he asked me about my hobbies and I mentioned my love of playing the ukulele. His response was… well, he basically said that with my fingers getting poked all day from now on, I would be unable to properly play anymore. He didn’t even mention any sort of CGM or fCGM or anything like that, even though these devices are covered largely by the German mandatory national health insurance. Unfortunately I didn’t have the opportunity to speak with this certain doctor again, however I was able to ask my dia doc for the fCGM on the first appointment I had with him. Thanks to research I was also able to ask for (lifesaving) Glucagon and a backup Insulin pen in case mine broke.

The point I want to make is that the moment I took charge of my condition and started to research my diabetes diagnosis became something I could deal with. I wasn’t a victim anymore, I was able to look out for my own interests and to advocate for myself. I was able to question things doctors said and to call them out when they didn’t tell me the whole truth. Information is key. Taking charge is key. Asking your doctor a million questions and asking them to explain their decisions to you and why they recommend a certain course of action is key.

In the end, I think I was really lucky to deal with these kind of health professionals early on because I learned quickly what’s important when managing diabetes.

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