As a person who lives with type one diabetes, I actually have many jobs: Keeping track of my glucose levels. Calculating amounts of carbohydrates, possibly also fats and protein. Deciding on the appropriate dose of insulin. Tracking the results. Factoring in 42 different components that may influence my blood sugar on any given day. Correcting high blood sugars. Treating lows with extra carbs. Making sure I have enough insulin and diabetes supplies in stock. Running to the pharmacy. Scheduling and attending loads and loads of appointments with medical professionals. And so much more ...
Source: Know Your Meme
But really, when I was diagnosed with type one diabetes ten years ago, I was instructed to do all this for one reason: "To prevent complications". That was it. That was my one job. This was all the motivation I was given: "Deal with this as best as you can, for the rest of your life, or else you'll go blind, your kidneys will fail and your feet will fall off".
Needless to say, that did nothing to motivate me. And years went by while I perfected the art of minimum input, maximum output for diabetes management. The results were not much more than okay, but at least diabetes didn't take up too much time and energy, which was what mattered most to me. Back then, I couldn't admit to anyone, especially not myself, that diabetes actually is a big deal and that it does demand a lot of energy and time.
Fast forward a few years and things are finally changing: I've found my way to the diabetes online community, realizing that I am, after all, not the only person in the world with diabetes. In fact, there are thousands of them on the internet and I have the possibility to connect with them. What I learned was liberating: We all struggle, we all have imperfect glucose levels and we all have to find our way to accept that. Realizing that I would never reach the level of perfection that was expected of me (by unhelpful medical professionals and unrealistic brochures) somehow made it easier for me to actually achieve better results. Moreover, diabetes was starting to become more than just something that had happened to me: I started blogging and even created my own little online shop. I made friends in the diabetes world and it became something like a second home to me.
Fast forward another few years: I'm rocking this whole diabetes thing! My time in range is pretty great, my A1c is 6.2%. I just started DIY looping. And my endocrinologist tells me I have diabetes-related polyneuropathy.
I had one job. And I failed. I had developed a diabetes-related complication.
So there it was: The shock, the stigma, the shame. But is that really the way we should look at this? I've been living with type 1 diabetes for ten years. If all goes well, I will keep living for many more years. Which in all likelihood means many more years with diabetes. And now also, many more years with complications. I felt as if I was in some sort of limbo: All I had been told was to prevent this one thing from happening. This worst-case scenario. But what happens when you haven't been able to do that? For the majority of my life, I will be living with diabetes-related complications. And yet, nobody had talked to me about anything beyond preventing them. I had simply not been prepared for life after developing one.
Source: Stephanie Haack
Well guess what? Life goes on. Nothing dramatically changed once I was diagnosed. Except that there was this label of failure. The way I was treated, spoken to, looked at when my complication was diagnosed and since then.
That does not necessarily mean that I was treated badly, but I was certainly treated differently. I could hear it in people's comments: Why was this happening to me? Had I done this to myself? Should I have taken better care of my diabetes? Of course I wondered this too: Was this the consequence of those few years when I didn't manage my diabetes well? But what about all those years of hard work and good results?
The stigma of diabetes-related complications is real. This needs to change - because it is neither justified nor helpful. The simple truth is that I never chose to have diabetes and I never chose to develop complications either. I always did my best. Maybe it wasn't always the textbook best, but it was the best I could do at the time. More importantly, even with ideal glucose levels this still could have happened to me. Language matters here: We cannot prevent complications. All we can do is decrease the risk of developing them. And if we do develop them, we can deal with them in an appropriate and helpful way. There is no place for blame or shame here.
Yes, diabetes-related complications are scary. But they're not too scary to talk about them! In fact, not talking about them might scare us even more. And if we are too afraid to screen for them, that can make them even more serious. It's a vicious cycle!
There is an abundance of serious issues that we can develop concerning our nerves, heart, kidneys, eyes, feet, skin, our digestive system as well as sexual and mental health. We need to be able to talk about them without stigma - in order to diagnose them early, treat them effectively and keep on living our lives without the additional burden of shame and blame. Because life goes on. Complications don't change that. They merely complicate it - just as diabetes itself. And we can certainly deal with that!
If you have been diagnosed with diabetes-related complications or are worried that you might be in the future: Don't be afraid to reach out and share your story. Many others are going through the same thing. You did not fail your one job. This is not your fault. It's just a part of life with diabetes - you will find a way to deal with it. And most importantly: You are not alone.