Type 1 Diabetes: A Slice Of Life
Over the last few weeks, I have had a few run-ins with the gentlest of diabetes police – people who don’t mean to be second-guessing me or asking me why I’m eating that, but still, they can’t help but ask. Sometimes their questions are subtle and we end up having a quiet, private discussion about what type 1 diabetes means to my life, and I welcome these opportunities as ways to help educate and advocate.
But other times, when I’m at the table with a piece of pie in my hand and about to sink my fork into it, knowing full-well that I am at a very good blood sugar and have bolused for the pie carefully, and someone asks, “Why are you eating that?” … I feel completely defeated. And embarrassed. Can’t a girl have dessert without being questioned? And when questioned, why isn’t my explanation good enough to justify my actions?
I’d like to be a person with diabetes who sits down for dinner and eats with everyone without the scrutiny.
There’s a difference, in my eyes, between choosing to be a diabetes advocate and being forced to explain myself. I have no problem explaining to a stranger what the difference between type 1 and type 2 diabetes is, or what this machine on my hip is, or why my purse keeps BEEEEEEP!ing, or why I’m carrying more candy than an Oompa Loompa. I actually like having these discussions, because I feel like people are only familiar with one kind of diabetes and one linear explanation for “the sugar,” and I like knowing that I’m helping to educate them about the different kinds of diabetes, particularly type 1.
What I don’t enjoy is having someone look at me like I’m doing something wrong, just because they are unfamiliar with the ways that my diabetes needs to be managed (or the way I’m choosing to manage it). I’ve written about diabetes and guilt before, and my inability to ever be “the perfect diabetic,” so this isn’t a new gripe. But what’s made me particularly frustrated is how there seems to be this common misconception that “it’s only diabetes” and it’s okay to pass judgment on my choices. Diabetes isn’t viewed as a serious disease to those outside the bubble of understanding, and complications for a young person with type 1 can thankfully be hard to spot, so maybe diabetes just looks too easy to some people. Maybe we are just too good at masking how challenging it can be sometimes.
What would my well-meaning diabetes police say if I responded to their comment of “Whoa! Having pie? You can’t have pie!” with a dissertation:
“Yes, I can have pie. If I’m willing to go through the necessary motions, you know? I have type 1 diabetes, and I wear this pump to give myself the insulin hormone that I don’t make for myself anymore. Supplementing all day long! Unlike type 2 diabetes, which I know you’re more familiar with, I don’t make any insulin at all, so every meal is a tight balance of blood sugar monitoring, carbohydrate counting, and then dosing my insulin in accordance with the meal I’m about to eat. Then, after the meal, I’ll keep monitoring to make sure that I’m not going too high or too low. It’s about balance, but not about deprivation. So yes, I can eat this. And I will eat this. And so long as I’m able to keep my numbers in check, my body shouldn’t rebel after a piece of pie.”
The thing is, I’ve given this explanation before. Many times. And I’ve explained diabetes to so many family members and so many friends (and just as many complete strangers) that it frustrates me endlessly to see that they aren’t retaining any of the information. And not only are they missing what I’m saying, but they’re constantly – albeit gently – calling me out for my actions. It makes me feel like such a crumb, like everyone is watching me while I eat. (Nothing like that to make you feel paranoid. Not to mention pregnancy weight gain, adding insult to injury.) I know they mean well, and I appreciate their concern, but they need to listen to me when I answer them. And they need to trust me when I give a clear explanation. I’m not asking them to explain their food choices or exercise decisions or the details of their daily regimen – it’s not my business.
I’m sorry if I seem frustrated, but the scrutiny is making my head and my heart ache. I don’t have a track record of being irresponsible. I don’t exhibit signs of disease ignorance or depression or unawareness. I’m taking very good care of myself, especially now with the baby growing inside of me and my focus turned to diabetes the majority of my day. I’m tuned in. I’m careful. I’m doing my best.
Yes, I can have the pie. Next time, I might skip it for reasons all my own. But whatever my decision, please don’t assume you have a right to question it. Until you are living with type 1 diabetes, you don’t understand. And I’m not expecting you to understand – ask me what you want to ask me. I’m more than willing to talk to you about this.
But if you don’t have a question, and you only have those comments, I’m just respectfully asking you to be quiet. Please. I’ve had enough.
*This blog post was originally published at Six Until Me.*
I have the same experiences as mentioned with the pie eating. Many un-informed people about diabetes should take diabetics as model role for eating habits and practices. What is good for treating diabetes is also good for those without when it comes to carbohydrate counting, exercise and more. What I am concerned about is the cost of medication for treating of diabetes. Why is insuline so expennsive. It isn’t dependent upon the pancreas of pigs or cows as it was once. It is manufactured in a laboratory and and has been for decades. Why is a vial over a $100.00. It is a life dependent necessity of life for diabetics type 1. We are held hostage to the price of life and quality of life seems eminent depending on what one is able to pay. Doesn’t seem right for a retired or soon too be retired person to use the rest of his 401K (what is left remaining) to give to the coffers for the right to live. I remember when one could purchase insuline for $1.99 a vial cash price for U-80 NPH or Lente. Granted the insulines are better today than of the 60′s & 70′s but why $100.00 or more for a cash paying customer? The research and developement has been overstated in the case of insuline, and the prices should be coming down not going up??? What is life going to be worth if we retire?