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D-Blog Week: At Least It's Not ...

Today's D-Blog Week prompt is:  "If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?"

This prompt makes me think of this:  "Type 1 diabetes?  At least it's not [insert other health condition here]."

I am not comfortable with this prompt.  Mostly because it makes me feel lucky for how things are, and at the same time apprehensive about how they make shake out.  And I can't reconcile those feelings; I can't bake them together into something I can swallow.

I feel lucky that, of all the chronic illnesses that I could be living with, I have type 1 diabetes.  "Lucky" actually feels like a dirty word, the wrong word, and I wish there was a word that would better exemplify that it's not "luck," but thankfulness for treatment options, coupled with thankfulness that I was born and raised in a country where my educated, employed parents had access to not only the drug I needed to stay alive, but also the means to provide education that would help me make choices and decisions that contributed to improved health outcomes.  This thankfulness comes part and parcel with an appreciation for how invisible type 1 diabetes can be, and how I don't look, or feel, very sick on a day-to-day basis.   I'm grateful that, even though my immune system has buckled in that one sense, I can survive.  I feel lucky.  This disease requires a lot of effort every day simply to hit stride with "normal," but most of the time, it's not something that keeps me from having a good day.

And exactly at the same time, every day is laced with an apprehension that I can't quite put my finger on.  While low blood sugars are brief in duration, sometimes they are so intense and honestly scary that they leave me nervous for hours, or weeks, afterward.  Sometimes the threat of a low is enough to kick apprehension into gear, like when I'm cramming extra glucose tabs into my Spibelt when I go for a run, picturing myself a few miles from home and wandering, disoriented and severely hypoglycemic.  Before I go to bed at night, every single night, I check the IOB on my pump and the graph on my Dexcom and I try to calculate the probability of an overnight hypoglycemic event that might be easy and quick to treat, or that may be the moment that changes everything.  And while high blood sugars aren't comfortable while they play out, I am apprehensive about what that 150, 190, 250 ... 300 mg/dL does even during it's brief visit.  Even though my body appears to work and seems healthy, this disease makes my body unable to self-manage blood sugar levels, and sometimes the worry about what is happening to the actual cells of my body is enough to fill my mind with troubling thoughts about what may happen, despite my efforts.  This apprehension now is without my dealing with marked complications, without other health conditions in play.  And that makes me more apprehensive about how the future may unfold.

This disease is a mental bowl of marbles, some black with worry, some white with hope, but mostly filled with gray ones of varying shades, where worry and apprehension and hope and fear and joy and life mix together.  "At least it's not [insert other health condition here]." But isn't that every health condition?  Doesn't everyone who is living with a chronic health issue, or taking care of someone with one, deal with a very constant and unique thread of chaos and comfort, braided tightly?

I wouldn't want to switch with anyone.  And I wouldn't want anyone to have to switch with me.  I don't like anyone's body being compromised in any way.  But at the same time, everyone who is managing a health "something" becomes part of my extended community.  Through diabetes, I hope I am learning about empathy, and hope, and not only other people's health conditions, but the human condition.

Yes, the last line was a bit cheesy, but it's what I kept thinking.  Let me have my kumbaya moments.  :)

Comments

Thanks for putting it this way. One thing I always do in my work and outside my work is to cultivate empathy, my own and other people's. Diabetes isn't the only reason I put this at the top of my list, but it is up there.

I think this was an excellent approach to a controversial prompt.

I got a lot of "at least it's not cancer" from insensitive people who didn't know that my father lost his battle with cancer less than a week after I was diagnosed.

The who has is worse game is a bad one to play. Even though I wished in a moment that I could make the family member who told me I caused my own diabetes live with it for a day to understand, I quickly realized that no matter how insensitive or stupid people can be about diabetes no one deserves it.

Lucky may not feel like a good word for it, but when it boils down, we're lucky to live with diabetes. The alternative is much less desirable.

It never becomes more obvious to me that other diseases come with problems I never think about until I am on hold with Edgepark. (or any other medical supply company). The recording offers information on catheters, and wipes, and things that I have no idea what they are for. One little 10 second spot about the omnipod, then off again for 5 minutes about everything else. As a SO to a PWD, I don't think I would want to trade helping with a hard to reach infusion site, for helping with a catheter.. even if they are "NOW WITH NEW AND IMPROVED LUBRICATION FOR EASIER INSERTION"

I totally agree with Vicki about the Edgepark thing. I am glad I don't have to deal with the stuff that they are trying to sell me when I'm on hold! I am also extremely grateful that my life with diabetes has, so far, come with very little actual pain. If I had a chronic illness that caused a lot of pain I don't know how well I would deal with it. Sure, some of the complications that can come with diabetes later on can cause pain and I'll I'll probably have to deal with some of those at some point but for the last 17 years, I've been lucky to be mostly pain free.

Are there chronic diseases that make you thinner and happier and your medications are free and come with candy? I want that one.

No trading for me either Kerri. I'd toss in some colored marbles too, you know for the goofy moments.

Wonderfully put. When I read your and others blogs I think why didn't I think of that or how to put it that way.

The problem I have with the "at least it's not..." is that having diabetes doesn't make me exempt from developing any of those other things. I have to admit that I have tried to look at the silver lining of diabetes being treatable. It's more like "at least it's not diabetes 100 years ago". My husband talks about how it would be kind of neat to live in the 1800's when so much of the country was not developed. I kind of ruin his game by pointing out that I'd most likely not have made it out of my teens. Of course, he doesn't have to look at a food and try to figure out how many carbs are in it before he eats it either. Puts you in a different mindset.

Kerri, as always I love your blog! The marble analogy hit home for me. (Alecia, props for you on the colored marbles, love that too!) I hope you won't mind if I incorporate it into my diabetes talk I give every fall to high school students. I love using visuals and I think this is a good one.

Marcie

Sioux indian prayer
"Help me never to judge another until I have walked a mile in his moccasins"
or flip flops, birkenstocks, sketchers, ugg boots,......................

I really like the way you've approached this, Kerri, and the marble analogy is something I can most definitely relate to. Like always, a great blog post!

A friend of mine once said that people with chronic illnesses are in the chronic illness club and sooner or later, everyone joins the club.

When it comes to the "at least it's not…" line, I think the rule is simple. The ONLY one who is allowed to look on the bright side is ME. (or in this case, my daughter and I, since she is the one with the diabetes)

I would never presume to tell someone my opinion about the "bright side" of facing a challenge I've never faced, or for that matter, even if they are facing a challenge I have faced, the silver lining I find may be very different than the one they find.

Besides which, trying to tell someone else, "at least it's not…" is akin to telling them, "you shouldn't be unhappy."

I saw a saying the other day that said, "Telling someone who is unhappy that they shouldn't be unhappy because it could be worse, is like telling someone who is happy that they shouldn't be happy because it could be better."

The whole "at least it isn't…" is exactly like that.

Furthermore, when my daughter was diagnosed, I had a number of people who tried to tell me that it would be MUCH easier for me to deal with a child with diabetes because my husband already has diabetes than it would be for someone with no experience with it at all…

really? You've got to be kidding me. This is my child. Nothing about her having a chronic life threatening illness is easy.

Kerri,
You rock. This post is amazing, like you're inside my head.
That's all :)

Hi Kerri. I am that girl. I have type 2 diabetes, but before I was diagnosed with it I was given some pretty O CRAP!!! diagnosis's. Like stage 3 breast cancer, and a potentially fatal heart condition called long QT syndrome. I have many others to go along with those. I've had doctors look at me and ask me how it is that I am still alive. I know for sure that I would gladly give up any one, or all of the diagnosis's. With the exception of cancer, there isn't one that I feel like I could say "Diabetes, well at least it isn't ...fill in the blank." Cancer is my hold out. I can put the other's in prospective by telling myself well...I won't have to do chemo. Dealing with most chronic diseases consists of the same five elements, eating right, exercising, taking medications correctly, getting proper rest and having a strong support community. Beyond that there isn't much else you can do. The truth is that we can't control everything. So we control what we can. That healthy people rarely understand that isn't surprising. That they say dumb things doesn't surprise me. What surprises me is that I can use my illnesses to have empathy for people who have illnesses that I don't know much about. I don't really understand what they are going through. But I can sympathize with them, and understand that in an ideal world they may be able to have great control. But we don't live in and ideal world, and our bodies don't behave ideally.

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