The Truth About Living With Diabetes
The truth is that people who contract Type 1 diabetes face a miserable future, and assuming they live long enough, they face a brutal day-to-day battle as the disease gradually eats away at almost every vital organ.
-Steve Cameron, "The Ugly Truth About Diabetes"
I'd like to go on record with three controversial statements--each part of my truth:
- America's #1 Diabetes Related Complication is Misinformation
- Diabetes doesn't cause complications; sustained hyperglycemia can.
- Devastating complications are not inevitable.
America needs a public lesson on diabetes. We need open dialogue. There's a firestorm swirling around the online community and one's beliefs surrounding diabetes and its complications are the target. Oprah and Dr. Oz didn't help matters. And well intentioned though he is, Steve Cameron article on what a "bitch" it is to "contract" the disease, isn't helping, either. I know many old and hairy diabetics who haven't experienced "the ugly truth" he portrays as inevitable. Such "truth" is only his own.
Everyone's diabetes is different. And for those who love us, I know it can't be easy at times. Cameron's sister suffers debilitating and devastating complications she must face with every day. He bears witness to her pain and daily struggles. He stands in his own truth and calls it like he sees it. I can't fault him for that. But like any of us, he should speak only for himself. We don't need him writing "the-future-of-those-with-diabetes." I'll speak for myself, knowing I'm only a true "expert" on the ways in which type 1 diabetes show up for me in my own body and life. And even then, it's an expertise culled from countless educated guesses and self-corrections along the way.
While it's impossible for a PWD (person with diabetes) expect a perfectly healthy future ahead of them without making adjustments in diet, exercise and mode of delivery of insulin, the same could be said for anyone. And while it's not my fault that I have type 1 diabetes and a wonky immune system which like to attack its own troops, I do have to take responsibility for the things I do have control over when managing my diabetes. Sure, there exists no guarantee that I will avoid all complications if I continue to test 5-10 times a day, eat lower-carb, get regular exercise and do all I can to keep my bloodsugar in a stable, healthy range, but it sure as hell helps. While it isn't an insurance policy against complications, it's as close as any one of us can come to such a thing.
Surely I don't need any more guilt over my life choices, which include occasional drinks out with friends and a cone with a solid scoop of custard perched atop it, but I do have to plan and consider such choices carefully because my pancreas produces no insulin, and I have to pump it on in using an educated guess based on the information available to me at the time (grams of carbs, fat content, insulin-on-board, time of the month, etc.) Sometimes I'm spot on. Other times, I over or under-calculate. Diabetes is not an exact science.
And while all types of diabetes result in abnormal fluctuations in glucose levels at times which put an obvious strain on the body (and take an emotional toll), all the frightful complications need a catalyst, which comes in the form of abnormally elevated bloodsugar sustained over long stretches of time, which yes, tends to mess up your system. It's the continuous overabundance of sugar (glucose) in the bloodstream which flows into vital organs which produces the worst damage. Complications like blindness, amputation and neuropathy, while possible, are not inherent or inevitable.
I say all this knowing I have a very real need to dispel such notions of hopeless and inevitably miserable futures for all diabetics in order to make it out of bed each day, trying my best to manage that which cannot ever be fully tamed. Still, diabetes is not a death-sentence--nor is it an automatic prescription for a lesser life than those without it. And while there is not always a direct correlation between how well one manages his/her bloodsugar across time and the complications one has or may find later on down the road, there is substantiated proof that sustained levels of extreme hyperglycemia serve as a catalyst for the vast majority of destruction within the body of a diabetic.
Diabetes isn't a hungry monster that "eats away at virtually every vital organ" no matter what. Complications don't come by way of mere diagnosis (note to Cameron: people don't contract diabetes, and, just for the record, it isn't contagious) and a decade of disease, nor is there a "pretty solid formula" for what to expect for each and every diabetic which includes "ten years of "OK" functioning" followed by a lifetime of misery and inevitable demise if your shake of the dice comes up short.
To me, this sounds like denial in a different form. It sounds like something I, too, might tell myself if I were forced to watch my sister struggling to cope with multiple comas, amputated toes, vision loss and dialysis. I certainly wouldn't blame my sister--that would be cruel and unfair since it's not her fault she has type 1 diabetes; I'd blame the monster of diabetes which nonsensically eats away at her body without due cause.
But you know what? That's not quite right, either. The truth as I see it is that there are choices one makes in life after being armed with the knowledge available at the time (which was in many ways incorrect years ago when Cameron's sisters was likely dx'd), and those choices have consequences. In life there're always going to be those "lucky ones" who sneak by under the radar somehow and manage a life of debauchery and indifference without ever fully facing the music. And there are those who do mostly well all their life and still get slammed with harsh consequences for a couple missteps. It isn't fair. We're not all dealt the same hand in life, and even if we were, we'd all play it differently.
I, too, have a sister living with type 1 diabetes. She's my identical twin, in fact, and no one is more precious to me than her. I love her with all my heart. She's had diabetes since age eight, which means 24 years of this stuff. But Mr. Cameron, my experience watching my sister navigate life and diabetes couldn't be more different than yours. I watched her soldier on as a young girl, inspired by her grit and determination. I watched her run four full marathons, and joined her in my first half-marathon ever. I saw us both travel far and wide across the country and the world discovering new horizons. I witnessed her wedding day and watched as she became a loving and strong army wife. I held her first child in my arms before even she. I've watched as she's given birth to three healthy amazing and beautiful children who are gifted with a loving, intelligent, and fully capable mother who just happens to have diabetes. Her body, while strained during pregnancy, is not ravaged by any monsters. Her future, though unknown, is not fated by misery. And her present-the only real moment we've got-is not riddled with fear.
I believe in free speech and support the right of every American to express their views and experiences with or without diabetes, it doesn't make what Mr. Cameron said right or true. While it may be more compelling to site his sister's story versus my own when seeking funding and support for a cure, it is wrong to propagate the myth that one's life and future (the implication being every diabetics future) are destined to be brutal and miserable. After 24 years witnessing my sister's life with diabetes, 21 of those as a type 1 myself, I know the truth isn't always as ugly as Dr. Oz or Mr. Cameron would like us to think. I believe in healthy doses of worry and concern. I reject the onslaught of it the media proposes--because the truth is, even if I do face complications, from mild to the most severe, living in fear now-in this blessed moment--robs me of the joy and peace-of-mind I so cherish in life. Even when that life includes diabetes.