But still...! Imagine, for a moment that you're a person living with diabetes, and have lived with it for many, many years... Imagine it's been challenging. You've gone through many phases of burn out, and phases of challenge. It's been a deep struggle, for various reasons:
- Managing this crap every day is a roller coaster, and well, it seldom likes to actually do what we expect it to do. Einstein once said that "doing the same thing over and over again and expecting different results" was the definition of insanity. I like to call it... Diabetes.
- You have some white coat person always reminding you if you don't take care of yourself, you're going to die. And NOT in uncertain terms, either.
- You'll get retinopathy...
- You'll get nephropathy...
- You'll get neuropathy...
- All the opathies...
- You'll get your limbs amputated...
- You'll lose bladder function...
- You'll be impotent...
- You'll have congestive heart failure, or a stroke...
- You'll go into DKA, or insulin shock...
- You'll DIE.
- You may not necessarily have many close friendships, in your immediate circle of acquaintances, that can actually understand you.
- You have some family members constantly reminding you of the things the white coat person was reminding you...
- You have friends, coworkers, and other relatives, wanting you to FORGET about what the white coats, and the other family members, keep reminding you, and then just go live life with them... "just live a little." (And it's always 'living' that's centered around food, or alcohol.)
- You have your own deep desires to want to just be NORMAL, or as close to normal as you can be... and "just live a little."
- You've carried the heavy load of discipline, and care, however individualized your load might be, for a long, long time. You are very AWARE of how serious it is if you don't carry the load.
- You get tired... You burn out. You drop the load.
Now... most of us understand this circle. We understand that it gets OLD carrying the load, and we get burnout. We stop... we go through the motions. Often, we even get eating disorders, etc.
So we crusade long and hard for our folks, because, we don't want people to think we gave ourselves complications, when they happen. No one consciously says "I'm going to chug donuts! I want retinopathy!" -- Burnout IS a part of chronic illness. It is NOT a character flaw. It is not simply "people not doing their part," or not taking responsibility. It is simply... people being TIRED from taking on so much responsibility.
By contrast, we may have well been doing 'our part,' and were just genetically predisposed to complications... But the world outside of us does not understand "genetically predisposed." The media doesn't tell ANYONE about "genetically predisposed" -- only about 'you can prevent and avoid complications, if you just take care of yourself.' Why? Because the media is not interested in shades of gray -- the media has a job, and that job is to gain viewership, and ratings. The only way you get viewership, readership, and ratings... is by generating controversy... And the only way you get controversy is by getting folks to think in the inflexible lanes of black and white. And when you scare people about the rising cost of diabetes (uncontrolled diabetes, mind you), and then show them articles about "My aunt Bonnie, who didn't take care of her diabetes, and was irresponsible, etc, etc..." people get MAD. Angry. Unsupportive. Unsympathetic.
Does that make sense? I'm sure it does.
Now, imagine a non-diabetic person... living their life as usual. They want to be normal, and keep living, just like anyone else... and as usual. They have the same family members, coworkers, and friends pressuring them to "just live a little."
They go to their doctor, and hear:
- "Meh, you could lose a couple of pounds, but you're fine."
- "You maaaaaay, or maaaaaaay not get diabetes down the long road... It's just not easy to say. But don't worry about it. You'll be fine. Just walk it off."
- "Meh, you're blood sugar is a little high, but you're fine! There's no way you have any issues... Just walk it off..."
- "Nah, I don't think we need to test anything, you're fine... Just walk it off..."
Now... If it is hard for us to get our minds wrapped around the realities and burdens of illness, when we HAVE illness... Imagine how hard it is for an illness-free person to get their minds wrapped around the POTENTIALS of illness, and some "boogieman" of illness, out there, somewhere, over the hill... that may come, or not come... but they can't really say for sure... It's just some hazy smoke and mirrors thing. Imagine being "genetically predisposed", but only if you trip! "Don't you ever TRIP!" (Of course, they don't ever mention the trip can also be almost anything, besides weight and diet...)
Sure, hindsight is 20/20. I'd love to go back in a time machine, and slap the crap out of Liz, and tell her "hey, start carrying the load a little sooner!" (Not that it'd be of much help, with all my other health conditions, medications, and predispositions... They are, together, a much stronger trigger than lifestyle...) Some might say I was damned if I didn't, and damned if I did... But I'm not quite sure what I'd be avoiding, frankly...
"Live sternly, as a diabetic, so that you don't become a diabetic."
Seems a bit off putting... It might be hard to convince Liz. Especially if no one's serious about the boogieman... It's never around, and just some foggy illusion thing... And EVERYONE says you can get rid of it, if you do get it... (snark, snark) I mean, yeah, we should ALL do our best to be healthy, and everything... but Liz might want to enjoy a burden free life for a little longer -- at least, as long as she can. I mean, isn't that what we long for when we're burnt out? A bit of freedom? Choices? Splurging without going into some diabetic hell episode? Having a little more than a 1/2 cup of moderation?
Yeah, I thought so... What burnt out people want is not that different than what illness free people want. A little freedom, a little empathy, a little break, a little life.
So we should crusade long and hard for folks, because, people should not think we gave ourselves diseases, when they happen. Chronic illness is NOT easy to manage, but neither is it exactly so easy to avoid... No one consciously says "I'm going to chug donuts! I want diabetes!," and most people aren't binge eating disordered individuals... (And so what if some are... People have demons. People fight them as they can... or struggle, as they tire of their loads... Life is hard.) They are just people living... and illness IS a part of living. Illness doesn't really care if you gave it to yourself, or not. It is NOT a character flaw. It just is... It is simply... people going through the motions of LIVING...
Great post Liz!
ReplyDeleteI like it! Well done.
ReplyDeleteAll I can say is, RIGHT ON.
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ReplyDeleteYES. THIS X A MILLION. So true, Liz. I've had PCOS burnout so much it isn't even funny. I'm hoping that years of THAT will help me cope more with Diabetes burnout.
ReplyDeleteThank you!!
ReplyDeleteThanks. You said a lot, and tied it all together very well.
ReplyDeleteLet the church say AMEN!! Lol! What can I say? You've nailed some very important thoughts, and issues that everyone, not just Diabetics, have in their everyday lives. Thanks for sharing such 'on target' thoughts! A must share on my fanpage! Thanks again!
ReplyDeleteToni Miller
First time I've read your blog. I really enjoyed it and I have to say SO VERY TRUE!
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