… 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.
*This blog post was originally published at Six Until Me.*