As Jess points out, today’s topic for Diabetes Blog Week is: “What is one thing you would tell someone who doesn’t have diabetes about living with diabetes?”
I’ve written before about the impact that diabetes has had on the way I think about food — and that’s a huge aspect of life with diabetes that people don’t really get and which I’d like to share. But that’s just part of something much larger that few people not directly connected to the disease truly understand: the emotional aspects of diabetes. The constant calculating, and estimating, and judgment, and sense of failure when, inevitably, your blood sugars rebel. In other words, the part of diabetes that is invisible, the part that torments you every time you take a bite of food, or feel a familiar trembling, or tuck your diabetic child into bed, or see an unwanted number on your glucometer’s screen.
So many times people react to the visible parts of diabetes — the shots, the finger pricks, the pump tubing. They try to be empathetic. “Doesn’t that hurt?” they ask. “How many times a day do you have to prick yourself?”
Before I had diabetes, that would have been my reaction, too — no one likes injections, and the visible parts of diabetes are, after all, unpleasant. But now that I actually have it myself, I don’t care about those superficial aspects. I don’t care about giving myself shots. I don’t care about finger sticks. What I care about is the uncertainty. The inconsistency. The discipline. The self-hatred. The frustration of never, ever being able to get things totally right.
That, I think, is what I’d most like to communicate to people. That insulin is not a cure; it is a management technique, and a very imperfect one at that. That injections are nothing compared to emotions. That I would gladly prick my fingers a dozen more times a day, give myself a hundred more shots, if there were any medication that could relieve the constant mental burden of living with this disease.
So this is what I wish I could tell the world about diabetes: sticking yourself is not the hard part. It’s the emotional toll that hurts the most.
This resonates. People on the outside are always asking about the finger sticks and the injections, and they seem slightly bored when I indicate the emotional toll.
I’d like to add to your insights one of mine: the reduction of pleasure in food. I look at a piece of toast, and all I see is 18g carbs. I don’t simply eat out of hunger or want; I eat numerically.
So glad I read this, as I couldn’ have put it any better. It is so true about the emotional thing – it takes so so much out of you, and I don’t think anyone who’s not diabetic could ever truly understand that, no matter how much they want to empathise with you. Thank you for sharing this – really resonated with me so much. Take care :) Sophs
Great post. I completely and totally agree. It is the inside struggle of diabetes that is the most difficult. Thanks for putting into words what we all struggle with day in and day out with Diabetes.