In the past couple of days I've seen 2 videos about young people with type 1 diabetes, the first on my local news station and the second at the new york times video health section. I was struck by a couple of things about this. The first of course, is that they were out there at all. Not one but two! Both videos were well done and both framed the rigors and challenges of living with type 1 diabetes pretty well. After all there's only so much you can get after in 3 minutes. They accurately captured the rigors of the pump and blood tests and taking shots and carb counting, as well as the challenges of being newly diagnosed as a young person. I was surprised how good it felt to see it all so openly discussed and pictured, highlighting what it takes to live with diabetes and in the process making it a little less secret or hidden away from everyday view. The fact that these stories had been made in the first place and made relatively well to boot was a really very good thing.
The second thing that came to mind as I watched these 2 pieces was the overall tone and point of view of the stories. Both were about newly diagnosed teens adjusting to the profound changes diabetes had brought to their lives. Both also spoke of the fact that their new regimens were becoming "normal" to these young people and their families. Of course there were the cautionary tales of why it's important to follow the regimen doctors, nutritionists and nurses had laid out as well as the usual "teen rebellion" under stories. But there was no real judgement attached to this and frankly both stories seemed to be taking a progressive step away from the usual line of "it's just like being normal with a couple of extra steps thrown in". Again, I though that was good.
But still after all is said and done, I am left feeling like a key part of the story is still missing here. As I said before, this very much could be a matter of limited time to tell a story, but I'm thinking that isn't the only reason. No, I think what's being missed is subtler and in all honesty not something a newly diagnosed person can articulate at the beginning of this process or an outside reporter would know to ask. Nor can the young people's family speak to it when they're also getting used to the new regimen, the tactical aspects of the disease and ultimately, internalizing the new definition of their child or sibling or parent as a person with a chronic illness. Everybody is adjusting and everyone involved wants it to all to just be OK. No one has the desire, let alone the language to talk about how very not normal diabetes actually is or for that matter, will ever be. As I watched the shows though, it felt like the 2 young people featured sensed this, and were reacting to that truth, even though they didn't have the language or perspective of time yet to express it. The adults around them were acknowledging that the "transition" was difficult but were also at the same time implying strongly that at some point these kids would "get used to it" and all would be "normal" again. Any resistance or struggle they were having at this point was framed at least in part, by the fact that they were teens and/or that this was all so new still and they were just getting comfortable with a new process. I understand this. From my experience and point of view, I also think it misses a subtler truth.
I got used to having diabetes. * I never got used to having diabetes. That's the first thing that came to mind when I started the exercise of capturing
20 things I know about diabetes a couple of years back. I
have gotten used to having it on a very basic and deep level of course, as have the people around me. In a very real way it
is totally normal for me now making it hard, if not impossible for me to separate myself from it. And yet, as I sit here after all these many years with it, I can say with total honesty that I am still
not used to having diabetes as well. It still shocks and surprises me, it still hurts me physically, and also on a very deep and profound level, it can still frighten me to my bones. These reactions may not be as stark or acute as when I was first diagnosed but that doesn't mean they aren't still there. As I watched those videos about 2 brave young people coping with the profound changes diabetes has brought to them, I was reminded again that yes, I have gotten used to having diabetes and yes too, I will never get used to having it either.
