Actually, he’s pretty cool. And was generous with the “marginally acceptable”! A nice way of saying “these stink”! Like you, I make MYSELF feel bad! I ruminate over every bad value.
Here is an interesting blog on the subject of…guilt… It’s from “Six until me”
Diabetes Can be a Five Letter Word.
… and that five letter word is “guilt.”
At the ePatient conference last week, Sue Rago was talking about diabetes and the complications that can arise. “But the complications of well-managed diabetes? None.”
And despite the fact that I met and enjoyed hanging out with Sue, this statement cut right through me. Well-managed diabetes produces no complications? So diabetes-related complications are just the result of an inattentive “host,” or “slacking off?” It’s not the fault of diabetes itself?
The direct relationship between diabetes and guilt has always made me feel … well, guilty. I’m not familiar with what it’s like to live with any other disease than type 1 diabetes, so I do feel lucky that I have never experienced something like cancer, but since my scope is limited, I know this diabetes/guilt dance all too well. And diabetes - as a disease state including both type 1, type 2, and gestational - always seems to come with some added bonus of “You did this to yourself.” It sounds harsh, but I hear it all the time.
It makes me feel so frustrated, this assumption that diabetes only does what we tell it do to. “The pump does it all for you, right? So diabetes is like, simple to manage?” Or “Just follow the rules and you’ll be fine, right? Bad stuff only happens to people who are lazy and don’t take care of themselves.” I’ve never, ever heard someone ask a person living with a different disease - “Oh, what did you do to make this happen?” - but I’ve heard someone ask me about my diabetic retinopathy and respond, “Well, you must not be controlling your diabetes very well.”
I work damn hard to manage my diabetes, and before I took the reigns on my disease, my parents worked hard to manage it. I take my insulin, I test my blood sugar, and I see the doctor as often (maybe more often) than I should. Efforts are made to best manage my health, but the fact remains that I have a disease. I don’t classify myself as “sick” and I don’t view my life as compromised, but the reality is that type 1 diabetes is an autoimmune disease that causes my pancreas to stop its production of insulin. As a result of this, the blood sugar homeostasis of my body has been forever disrupted. And while the medical advances of the last few decades have been tremendous, giving rise to things like improved meter accuracy, insulin pumps, faster-acting insulin, and continuous glucose monitoring devices, there still isn’t a cure. My pancreas remains busted, so I will never be in “perfect diabetes control.”
Yet so many people think that a pump or a medication is the answer, robbing fault from diabetes for any complications that may arise and instead making complications the result of “something I did.” I will fight that assertion tooth and nail for the rest of my life, because I care too much about my health and work too hard to let the perception of complications be that of fault.
Back in March, I found this piece of paper wedged into an old diary of mine from middle school:
Even then, as a kid, I was taught to feel solely responsible for my diabetes, as though diabetes itself didn’t play a role in any of the outcomes. “If I want to live:” is how that piece of paper starts off. What a heavy burden for a child with diabetes. High blood sugars? My fault. Spilling protein into my urine? My fault. Any threat of complication? My fault? Diabetes wasn’t the cause - I was, apparently. (Granted, many times highs and lows were a result of being a rebellious teenager or eating a ‘forbidden food,’ but were it not for the diabetes in the first place, it wouldn’t be an issue.)
I don’t agree with this mentality, and I refuse to subscribe to it. Type 1 diabetes requires daily maintenance and diligence, but even if I follow “all the rules,” there can still be complications. My genetic make-up plays a role. My family history plays a role. And of course, my actions play a role. This isn’t a diatribe to give me a free pass to slack off and not care about my health. I need to take care of myself and work hard for my health. I have always tried to remember my role in this relationship with diabetes, but I can’t fool myself into thinking that if I just work hard enough, my body won’t ever exhibit diabetes complications. If my eyes start to bleed, it’s not because I didn’t care enough. Things happen, and I need to be able to roll with whatever life dishes out. I live with diabetes every day - I don’t need the guilt.
Because at the end of the day, diabetes complications are the result of diabetes.
Posted by Kerri Morrone Sparling on October 29, 2009 11:30 AM
As the parent of a diabetic child…you feel graded too… and you also feel responsible for the disease in the first place. You ask yourself…did I feed him something that caused this…did he get it from my side of the family… If had made him eat better or take better vitamins…would he still have gotten this??? If his numbers are high…was dinner figured wrong…or low did I have him take too much? Yes…there is guilt and self grading being the parent of the diabetic too.
I can relate. Although I’ve been telling myself lately when its higher than it should be, that’s not very cooperative.
Karen…to a mom of a T1D child…I chuckle at your comment. One time when we were in the endo’s office they checked Rob’s BS, he was 100. The doc replied “A perfect score!”. At that time, it made me wonder if Rob felt like he was being graded. lots of chuckles
I like the idea of saying “check blood sugar” and when it isn’t in range saying. “My blood sugar is not being cooperative.” That takes the feeling of guilt away from us who deal with this everyday and puts the blame squarely in the lap of diabetes itself. Thanks for the wonderful idea.
Can I quote you on that one… Its the truth, you take insulin, and that magic number doesn’t always do what youd like or expect it to (completely)… My blood sugar isnt being cooperative isnt judgemental on you, and it says you know its not ideal but your dealing with it
Why do i think of gilbert godfrey the comedian saying “YOU FAIL” in the tone he goes “YOU FOOL”
My first 4 or 5 years of home bg testing (I had started before home bg testing, when only urine testing was available) I hated it too. Maybe would check 2 times a day instead of the 4 I was supposed to.
Since then I’ve come to see it as a valuable tool. Doesn’t mean I can make every number come out “right” by any means but I would feel completely and totally lost without it. And I often test 8 or more times a day… not because I feel “good” or “bad” about the numbers but because how can I be in control unless I know the number and what to do about it?
Yeah - I feel the same way too Tim - with being in control. My endo last week after I saw him due to having high BG’s (up in 400’s - freaked me out) - lead him to say that I am OCD. Being the polite gal I am, and having read many other PWD’s descriptions of diabetes being 24/7 - I told him off in a nice way. Maybe I am OCD, but I’d rather be in as good health as I can to avoid complications further down the road.
Off to test my BG’s - this MDI method is still a relearning experience for me now that I’ve semi-perfected my BG’s with an insulin pump .
Anna from Montreal - The Roller Coaster Ride of Diabetes - Whoo! Whoo!
Lol, i did that. My endo was talking about me being so on top of my sugar that i knew what it was going to be in the future, and asked why i was aiming for 291 the next night.
I feel this most accutely when we are at the lab in our local hospital. Seems that, more often than not, my daughters BG number is high in the lab and I take a deep breath waiting for the lab tech to comment…“oh that’s not a very good number, what’s going on?”, or just a, “hmmm”, or “tsk, tsk”. Once the lab tech even phoned me at home afterwards (our first visit shortly after moving to this community) to say that maybe we wanted to look into seeing a dietician and here’s her phone number! Sigh.