I’m soon-to-be 28 female from tiny south-European country, Slovenia. My story of diabetes-related incidents start in my childhood (I was having reactive hypos), but I was not diagnosed with diabetes until 2013, after some serious stress episodes. I am VERY lucky to live in a country where 95% of my diabetes necessities are covered via national health insurance. Tiny portion is covered by extra insurance, and some less necessary things (ketones stripes, glucose tabs) I pay out of pocket. Worst case, Slovenian type 1 diabetics pay about 50€ (about 60$) per month. In last few years, things are getting a bit worse (it’s sometimes hard to get the amount of supplies you need) but all in all, we Europeans have it good when it comes to this (the actual quality of medical care is quite bad in most placess, but let’s not go there).
My official diagnosis is now “slow onset type 1 diabetes” as we don’t use the term LADA. I was only 23 when I was diagnosed: fit, normal weight and all, and despite all this, like lots of LADA patients, wrongly diagnosed with type 2 at first. I must confess, that unnerved me much more than the correct diagnosis I recieved later. I just felt like it’s impossible, although my grandmother has it. From that little knowledge I had of diabetes, it just didn’t seem right. Luckily, I understand English and am good at using computers/internet, so I gooooogled and goooooogled and read until I was completely overwhelmed by all the information (read about MODY, low carb diets, general autoimmunity… etc., too), but I did get something out of it: I probably have LADA. Now, I must say I have mixed experiences with doctors. I was lucky that my primary care physican sent me to do OGTT only based on me telling her my reactive hypos got more frequent. But to get from my initial diagnosis in june 2013 to my correct diagnosis in dec 2014 (and starting insulin) it took 4 doctors and me being VERY proactive and pushy (which I naturally AM NOT). I was also still reading soooo much, mostly online, talking to only real-life type 1 diabetic I know, connecting to some type 1’s from my country via forums… I was doing so much to get control over it, and although I did not realise it at the time, I was overwhelmed. Also, I had quite a different mindset back then, and I resented anyone who did not take time to listen and understand me. I WAS taking steps to get control of the disease but I don’t think I was understanding the disease itself at the time. It’s partly due to my other health issues that felt more real and immediate, but mostly due to me not actually taking time and slowly absorb it all, but just rushing into all the data and what should I do and what not to do and how others do it and all the “oh, my, I’m so alone with this”… It was just too much, all of it.
When I started insulin, it still did not hit me. I was used to having hypos, and actually doing the whole testing and injecting routine did not phase me as much as I expected, at least not initially. My eyes and feet were fine, okay. I did notice my skin is drier and probably some other symptoms, but I usually thought it’s probably because of my other illnesses, heck, I only have gotten diagnosed, and my a1c was never above 6,5% !
Also, it did not yet impact me on a personal level. Everything I had to change because of it… I accepted it. Telling people about it? Ok. Sports? No problems so far, only few hypos that I managed just fine. Testing in public? I don’t give a s**t, except if some people are real near me - then I just asked if they’re comfortable (if not, I (or them) turn away). I went to the diabetic clinic before, and seen diabetic wounds, and seen people disabled by diabetes… I was even following blog of a much younger lady (18), a cautionary tale how fast it can get really bad (she was almost completely neglecting her diabetes for years, and the consequences were severe vision problems, kidney problems, and getting few of her toes amputated). It did not affect me. That was not me. I was taking care of myself.
But…
The last few months, these are the months I am fully realising the reality of this sneaky disease. My levels rose and so of course did my insulin requirements. Okay, I started to get wary, a bit. But then… In June, I was making myself a coffee, boiling some water in the electric keetle. Not realising it had just boiled (a moment of carelessness), I reached above the keetle just when a gush of steam blew directly on the lower side of my forearm, just below the wrist. Ouch. The burn was about 5cm big (I think that’s about 2 inches), round. At first, all seemed okay. But then the blisters started to form. A few smaller ones and a big one, that one later fused with some smaller ones. It was to big not to use plasters, because I kept hitting myself (you don’t realise how much you use a certain part of your body until it’s injured), and of course, eventually it burst. What left was about 3x2cm (1inch times 1,5inch) big wound. That would not heal. Of course not! I waited for a week, until it got really bad. My wrist was swollen and red, my whole arm hurt and the forearm felt hot (and was hot to the touch). The next day, after a very bad night (pain!), I went to the urgent care (it was Saturday) and luckily got somebody who was sensible enough to immediately presrcibe me antibiotics and some ointment for the wound. Also urged me to vaccinate for tetanus.
This was the point where it hit me. I was fully aware that it’s very very possible that if I didn’t have diabetes, it wouldn’t have gotten so bad. I was grateful that I live in a civilized country where healthcare is accesible to (nearly) all and considered a basic human need. And I was realising, yes, I have diabetes, and looooots and loooots of things in my life are yet to be impacted by it. Some of them, I did not even think of yet or imagine them. Will I be discriminated against at a workplace someday? Maybe. Will I lose the ability to feel hypos? Possible. You never know. I might or might not develop some complications someday. I might or might not die sooner than an average persone because of it. I cannot predict this.
BUT! I can still do my best and continue to better myself and my lifestyle (with occasional lapses, because I am HUMAN) and do everything in my power to live a fulfilling, happy life for me and for people who love me or care about me. That’s why I despite my current unfavorable circumstances, I still gathered all my power and will to make an appointment with the best diabetologist in the country, who also happens to be an amazing person, who keeps ecudating herself, not only in the field of diabetes, but also related fields (she even gotten a degree in Psychotherapy to help depressed and burned out diabetics!).
That’s why I’m keeping myself informed (but also being realistic and not getting my hopes up every time) about the new developments in treatment… and maybe even a cure? Someday. Maybe. I am still young, a lot can happen in years to come.
This disease will not consume me… But, I am now starting to respect it and really accepting it as a part of me that will not just dissapear.
