Story Time: My diabetes diagnosis & my way to the online community

I’m currently in the midst of one of those phases when I have a lot on my plate. Work keeps me very busy, there’s a lot going in the world of diabetes, I’m on the road a lot and I’m just about to embark on an exciting trip! Oh and sure – on top of it all, there’s this thing called diabetes, which I also get to manage all day long. 

So my head is spinning – and yet, my thoughts keep circling back to 2009. This week marks the 10th anniversary of my diagnosis. Story Time!

2009 – I had just turned 18 back then. Timo and I had just met. My diabetes was already there, we just didn’t know it yet. (Talk about buying the cat in a bag!) I was in 12th grade, fully focused on my finals and already planning the next steps. After all, the world was my oyster! I was also a passionate handball player and loved to completely exhaust myself during a good game. 

But I wasn’t feeling well – for months on end. At some point, sport was more torture than fun. I was constantly ill and unwittingly lost weight. Colds, muscle aches, bladder infections… I sat in waiting rooms all the time. The highlight I had been looking forward to forever – Rock am Ring, the biggest rock music festival in Germany – I experienced as if through thick fog. Luckily, I didn’t drink any alcohol because I was on antibiotics. Otherwise things might have gone very wrong. After the festival I went back to school. It’s normal to be tired and flabby after a festival weekend, right? But THAT tired? Something was off. But it still hadn’t really „clicked“ yet. 

Only when I got insanely thirsty did I realized that something was really wrong. I could hardly endure it: In the cinema, I ran out in the middle of the movie to jug down a litre of Fanta (Fanta? Seriously?). At school, I interrupted class and asked my classmates and even my teachers for something to drink. Once I even got off the school bus and ran to the next gas station because I couldn’t stand the 15 minute ride without a drink. I got the sugary iced tea – what a great idea! Once I had resorted to drinking from huge carafes instead of glasses, I knew: This can’t be normal!

I did what nowadays, anyone would do. At that time though, people thought I was mad: I googled my symptoms. The search results were pretty clear: Thirst, combined with fatigue, was a clear indication of diabetes. In equal parts amused, confused and worried, I called my boyfriend and told him about my findings. He couldn’t believe it either. Back then, like so many people, we associated the word diabetes with unhealthy lifestyle, overweight and old age – but certainly not with a healthy 17-year-old student! 

But it was clear that a consultation with Dr. Google wasn’t good enough. So the next day, I was in a doctor’s office again – my mother was there, but kept very quiet. I told the doctor about my symptoms and her face froze instantly. She knew me quite well back then and I could see how shocked and saddened she was. Wordlessly, she gave the nurse a meaningful nod. She immediately got out a blood glucose meter. The doctor began: „It is very likely that you…“ – I interrupted her: „Diabetes. I know“. A finger prick and a few seconds that seemed like eternity later, it was official: I have type 1 diabetes.

Immediately, we were sent to see the only endocrinologist in town. We probably didn’t have to wait there for too long, but my memories of the appointment there are very foggy. All I remember is that he gave me my first insulin injection – and that I actually tried to resist it. Unfortunately, it’s not quite as spectacular as on TV. The improvement isn’t really that immediate and dramatic. But throughout the following hours, I did start to feel better already. 

The endocrinologist set up a one-week stay in a clinic. Meanwhile my mum and I drove to my school and let them know I wouldn’t come in that week. I even got to talk to my friends for a moment. They were deeply shocked while I was quite relaxed and in the mood to crack jokes. At home, I packed my things and for the first time the diagnosis began to sink in: Diabetes. Sugar. What would change now? One thing quickly popped into my mind: No more sweets! So I did the only reasonable thing I could possibly have done: I ate a huge bowl of fruit loops with orange juice. 😀 1. Don’t knock it ’til you’ve tried it! 2. Yes, I know. Not a smart move. But what did I know back then? 😉

The week at the clinic was like a mini-vacation. At that time I was covered by private health insurance and I was given first-class care. I was feeling better every day. And more importantly: I finally knew what was wrong with my body and why had I felt so sick in the last months (HbA1c 14%). It was clear to me that my life would change. But to me, that was much better than uncertainty, worry and mysterious illness. 

The insulin injections were a bit bumpy at first: I didn’t want to do it myself, but the nurse didn’t want to completely let me off the hook either. So we compromised and the two of us fiddled around with the syringe. I felt so silly that immediately, I preferred to do it alone. All in all, I was very pragmatic at that time, I wanted to learn as much as possible and be independent. My focus: I wanted to go back to my normal life. I was motivated and determined.

But the honeymoon phase put a spoke in my wheel. My factors kept changing until I didn’t have to inject any insulin at all for two months. It was as if I was healed. But of course, that wasn’t true. Instead, I got to watch my pancreas give up completely throughout the following months. This process was not just painful, it was an annoying hindrance. I was impatient! I wanted to finally know how to manage my diabetes and get on with it – perfect straight lines included. At that time, I had no idea that this was an unattainable goal anyway. 

Unfortunately, the medical support afterwards was not very helpful. The only endocrinologist available to me had an uncanny gift of sparking fear and self-doubt in me, as well as for nipping any kind of motivation in the bud. Empathy? None! Moreover, people were scared of the swine flu at that time. Since I was part of a high-risk group now, he wanted to keep me away from festivals (and probably every kind of fun and adventure). That didn’t really seem realistic and applicable to my life. So I distanced myself from him – and drifted away. 

Now living my life was the focus again. I was determined not to let diabetes take the leading role in my life. I wanted to give it as little energy and attention as possible. Although I always took my insulin, I rarely ever checked my blood glucose. Years went by and I was flying blind. I finished school, moved out of my parent’s house, got my first own apartment and started university. Enjoying life was always the focus. But diabetes was always somewhere in the back of my mind. I pretended to myself and everyone around me that diabetes wasn’t a big deal, but of course it weighed heavily in reality. Over the years, I tried again and again to start fresh and really get my diabetes „under control“. Again and again I fell back into old patterns. At times I didn’t touch my blood sugar meter for months. How I survived my semester abroad in Moscow, including lots of vodka, I have no idea. It certainly wasn’t my doctor’s motivational speech: „Maybe you can do better over there. I’ll believe it when I see it.“. 

Although I had diagnosed myself through the internet back then, I simply never thought to google diabetes again afterwards. If I had, maybe some things might have gone differently. Instead, I felt alone and isolated, because I didn’t know anyone else who had diabetes. I felt like nobody really understood what I was going through, not my friends and family, and certainly not my doctor. 

The most important step for me was to finally change doctors at some point. After all, I lived in Cologne by then and had options. That gave me some drive again – yet there were still ups and downs. At some point there was another switch of doctors. If I remember correctly, I called my practice during one of my many „fresh starts“ and was told that my doctor had left the practice months ago. Oops. So I went looking again  and this time i found a really great endocrinologist. He listened calmly, showed compassion and understanding and he even praised me. I had never experienced that before. He also recognized the small steps, for example me showing up at his practice at all. We were on the right track. When we arranged a follow-up appointment, he noticed that I was making a note on my smartphone. At that time, this kind of thing was still new. His face lighted up. He had just returned from a conference in Berlin and told me about the young people with type 1 he had met there. He handed me a flyer about the diabetes online community: „You are so modern and digital – maybe this is something for you“. 

A flyer. Not very digital. And admittedly not very impressive either. But I was interested! And that was exactly the impulse I needed. I finally turned to the internet again and a whole new world opened up to me. A world in which I was no longer alone, but in which I could connect and share experiences with thousands of other people with type 1. I was completely overwhelmed. The realization that even people who have had diabetes for years and put so much energy into their therapy, still have really shit days again and again, opened my eyes: No one really, really knows what they’re doing. We all just do our best and will fail again and again. And that’s okay! Diabetes is shitty – and none of us chose it voluntarily. I still have to tell myself all that myself today. But back then, it was completely new information for me. 

It quickly became clear to me: I wanted to be part of this community. I started to share my experiences in Facebook groups, took part in a few tweet chats and soon I had the idea to write my own blog. At first I hesitated, but again, there was an impulse from the outside. During my studies in Edinburgh, I HAD to start a blog as homework for Online Marketing. 

So I had to, but I wanted to as well! And I never regretted it. Sharing life with diabetes with all of you out there has become an integral part of my diabetes therapy. It really helps me to share the ups and downs every day. Having people who really understand the frustrations, but also the successes – it’s amazing. Without the community I would not have understood how complex diabetes really is. But with you all by my side, I know that we can all do it – together. And for that I want to say THANK YOU! <3