Friday, January 8, 2010

Powerful

A couple of days ago LeeAnn over at The Butter Compartment posted something that really resonated with me. Everyone I've met in the DOC or in person with diabetes talks about how it's so refreshing that other diabetics "get it." And we do. But then I read something like this and I think "Wow, did she read my mind? How does she know what I've been thinking for the last 18 years? How can someone else know the hurt, outrage, pain, anger, denial, guilt, shame and utter frustration that I've been feeling for years?"

It's these times when I truly realize what it means to say that we all get it. I hope she won't mind me sharing a few of her words with you. She had a lot to say in her post which start off largely about people who are close to someone with diabetes and how easy and foolish it is for them to point the blame at the person when their health is in poor control or when they've given up on their diabetes management.

(Side note: I'll even go one step further and call it selfish and egotistical to think that this disease is so easily handled that any misstep deserves someone else's ire and annoyance. As much as I love my husband and appreciate everything he's ever done to make my management that much easier, it is NOT his disease. HE is not managing it, HE does not feel the lows and the highs, HE doesn't have to remember to correct for ever bloodsugar, every snack, every meal, HE is not weighed down by the worry of future complications with HIS body and HE can easily forget that there are shots to be taken and blood sugar to be tested without any consequence to HIS day. That's all MY burden to carry.

I love him for helping but to make me feel like my burden is putting him out, which is how a lot of these spouses seem to feel, would be the height of selfishness and arrogance. Being supportive is caring that your loved one has a burden and wanting to make it lighter, it's being scared of the complications they might have because it breaks your heart to know they are hurting. It's NOT being annoyed by their lack of stamina or precision or their expression of frustration when it comes to their diabetes management because let me tell you, this disease sucks. And, you know what? We all lose our way and we all find ourselves having a day where it feels like our responsibilities are strangling us. Whether it's our job, our family, our finances, everyone has those responsibilities that they wish they could run away from or at least avoid for a while. And imagine if yours was diabetes? Can you? That's a pretty awesome responsibility. And there is no precision to it, there is only routine and a lot of educated guessing when things don't happen they way the doctors say they should. And as far as stamina, after dealing with this monkey on my back for 18 years I can just say that is the hardest part of all. Rant over.)

LeeAnn also spoke of the Casey Johnson headlines and how many media outlets are blaming her for her death, saying she did not control her diabetes well enough. LeeAnn was talking about the finger-pointing and the blame that can sometimes permeate this disease. She went on to say that maybe the blame isn't so easily pinned on the person with diabetes, perhaps there is enough to go around. Here are some of her words that resonated with me the most:

"I could almost hear the accusations that they did it to themselves. But did they? I’ve been down that road, so perhaps I’m biased, but I like to think I also have a shred of insight into how and why a diabetic travels that road at all. I think it’s shortsighted to lay the blame solely at the feet of anyone who’s lost their way with diabetes management. As a former non-compliant diabetic, I don’t mean to suggest that I didn’t have a hand in the self-destruction. It’s called self-destruction for a reason after all. However, it’s important to remember that diabetes mismanagement doesn’t happen in a vacuum. There are outside forces that can and do have an effect on disease outcome. Maybe the responsibility needs to be shared.

. . .

I agree that the treatment protocol is ridiculous and labor-intensive. Pretending to be a pancreas day in and day out isn’t as fun as it sounds. If doing this crap every day until I die isn’t a complete time/energy/emotion succubus, I don’t know what is. People without diabetes only have the hardship of imagining living like this for a few seconds before they have the luxury of conveniently dismissing it as not as bad as we say it is without ever really having to do it.

We all know the rest of the world doesn’t “get” what it’s like to live with diabetes. Many think it’s the disease of fat people who eat too many donuts, and we just need to get off our collective asses and go for a walk, so we’ll all be cured. Forward your thank you notes to just about any mass media outlet for that prevalent misconception. If people are paying attention, they might notice the pump tubing and realize it isn’t a phone, or worse, a beeper, the surreptitious fingersticks, the dazed expression of a low BG. They aren’t privy to the perpetual mental purgatory where you are forever destined to obsess about how much insulin you took, how much you should take, what you should or shouldn’t eat and how many carbs might be hiding in it, and how this, that or the other thing is going to affect your blood sugar. All the bleeping time. Arguing. Cooking. Conversing. Dancing. Decorating the Christmas tree. Doing laundry. Driving. Funerals. Gardening. Graduations. Grocery shopping. House hunting. Job interviews. Masturbation. Meetings at work. Mini-golf. Movies. Participating in sports. Parties. Playing games. Reading. Sex. Shoveling snow. Showering. Signing up for a checking account. Sleeping. Standing in line at airport security. Taking exams. Trying on clothes at the mall. Vacationing. Walking the dog. Watching TV. Weddings. It interrupts everything.

And that’s not supposed to get tiring? We’re supposed to be OK with it and just suck it up without complaining, being pissed, or wanting to quit? When we aren’t OK with it, and we get tired, angry, depressed, and unmotivated, we’re seen as weak, lazy, undedicated, irresponsible, and of poor character? That’s justified, how exactly?

Since this is the treatment protocol with which we’re stuck though, how about a little more support from those people who call themselves our diabetes care teams? To a large extent, the label is a misnomer since we’re the ones burdened with all the work, but that shouldn’t absolve them of their responsibility to better support us. Where is the general consensus by the medical community that they’re screwing up by not providing the resources we need to properly manage this time, labor and emotion-intensive disease?"

If I've said it once, I've said it a thousand times. But it's still just as true . . . It's just so nice to know that there are those out there that get it. Makes you feel a little less crazy and a lot less alone and way more validated! And don't we all love a little validation! ;-)

Something to think about,
~Layne

1 comment:

  1. You touched on a lot of things there, many of which we are going through and we are brand new to this. Your story is both an inspiration and illuminating of the things we'll face down the road. Look forward to following you.

    Steve

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