I had a Twitter exchange recently with another T1D. When someone asks her why her blood sugar is the way it is, she might say it’s because the moon was full – or because it wasn’t.
I heard this a lot when Samson was first diagnosed. I would ask why something spiked him, and would get “because it was a Wednesday.” Or statements that diabetes is inherently unknowable and indecipherable. Or outright exhortations to stop aiming for such tight control as it simply wasn’t possible.
At the time I found those comments EXTREMELY discouraging. Here I was, heartbroken that my beautiful little boy would be faced with potentially a lifetime of complications, and doctors are saying THIS ONE NUMBER is literally the only thing I can control to lower complication risks – and people are telling me it’s so inherently variable that expecting the level of control I was seeking was simply unrealistic.
On the other hand, she said she finds the assumption that she can keep always in-range blood sugars very discouraging. Which I completely get at this point. I mean, we don’t manage that feat and I think that while it’s *possible, the amount of effort to do it would be unrealistic given other factors in our life. And even amazing things like @daisymae 's swimming thread shows how close to amazing you can get – but that there is so much trial and error and that perfect certainly isn’t possible.
I guess I am sort of waffling around the basic question of what’s the right way to speak about diabetes when someone is first diagnosed – and later, when they’re frustrated with the control they get?
How much optimism and sense of control is good for a person to hear about, and how much just makes them feel unnecessarily guilty?
Do you find the “because of the moon!” type of talk annoying or discouraging, or actually reassuring and motivating?