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Behind the Scenes

August 19, 2008

A few days ago, I read a post from Lee Ann about “good diabetics” and “bad diabetics.” It was frustrating to read that there are people who think there is some kind of civil war going on in the diabetes community. It made me reflect on an earlier post I wrote about noncompliant diabetics. It’s something I still believe, that there are people who are noncompliant, but reading Lee Ann’s story and the stories from other people who are struggling with diabetes made me realize that we often focus on the surface of our life with diabetes and not on the deeper, emotional triggers that causes us to do what we do.

There are those that are considered “good” diabetics – those who test frequently, count carbs perfectly and have an excellent A1C. Then there are “bad” diabetics – who don’t test, never carb count and have an A1C in the double digits. While there are diabetics who are like that, I don’t think having these glossy, stereotypical categories are really fair.

Today, I found out that my A1C has gone up a full point. In February, my A1C was 7.2. Now, it’s 8.1. On the surface, it looks like I’m a “bad” diabetic. It’s gone up. My logbook is littered with blood sugars in the stratosphere. But is that the full story? Clearly not. Life the past few months have been very stressful. I’ve traveled to eight states, spent hundreds of dollars fixing my car, dealt with structural changes at work and moved to a new apartment by myself. My life has been messy and I’m not the only one who deals with this.

This happens. Life happens.

When you look at the surface of someone who is struggling with diabetes, someone with a higher A1C, an empty logbook or penchant for SWAG boluses, perhaps we should look beyond the traditional excuses.

We are complex human beings and diabetes is a complex chronic illness, so to think that we can wrap why someone is a “bad” diabetic and put a pretty bow on it is, quite frankly, ridiculous. I know there are some people who are noncompliant because they are simply irresponsible and lazy. But I also know there are reasons that are wholly separate from this disease that range from eating disorders to clinical depression to life situations that make stabilizing diabetes incredibly difficult.

When I found out my A1C was over eight percent, the highest it’s been since I was a sophomore in college, I wasn’t surprised but I was also crushed. I knew I could do better because I had. But my endocrinologist – my lovely, lovely endocrinologist – wasn’t discourage. She asked me what had been going on, and I told her about my travel and my move. She understood that it was a stressful time and that now things were starting to stabilize. We talked through my trouble spots, zeroing in one my morning spikes and my correction crashes. Just talking about what was going on and knowing that there was someone who was going to walk through this with me was a weight off my shoulders.

Life is complex. It changes and with it, so do your blood sugars and your basal rates and your bolus ratios. Having a chaotic life and a chaotic disease can be overwhelming, which is why I think it’s so important to have a place that centers me, that refocuses my scattered energy and frustrations. It’s why I spend so much time on advocacy and mentoring. I’m able to channel the parts of diabetes that I don’t like into something that I do like. When I hear that people struggling with disease are afraid to talk about what they’re going through it really makes me sad and disappointed.

Being a “bad” diabetic – whatever that might mean – does not mean you are a bad person.

Diabetes management is not black or white, but varying degrees of gray. It’s not a game where you have to pick sides. The behind the scenes of our lives are only open as we make them. If you are struggling with something, say something. We should never be afraid to talk about our struggles. And if someone says something to you, listen. They are opening up their soul, their struggles and their fears. Nothing any of us say should ever, ever be disregarded.

Behind the scenes, we really are all the same and we all deserve respect and compassion.

11 Comments
  1. August 19, 2008 9:33 PM

    That was very well said. I hope you’re on your way to picking yourself up from the news of your most recent A1c. As with any out-of-range number on our meters, it’s just a number, and it’s not static nor is it a judgment of us as people. It’s very challenging to managing a complex disease when life becomes extra complex (speaking as someone still licking my unemployment wounds). I’m sure you’ll tackle the areas on which you can make adjustments with the same positive energy you seem to invest into other things.
    LA🙂

  2. whitney permalink
    August 20, 2008 12:03 AM

    you summed it up perfectly…life is messy and it’s reflected in our numbers. that’s what’s so great about tomorrow–it’s always there, giving us an opportunity to become better. i’m really enjoying your blog🙂

  3. August 20, 2008 7:09 AM

    You are so right. Things happen. Sometimes we aren’t “perfect”. And that’s okay.

  4. August 20, 2008 8:34 AM

    Deb Butterfield (author of “Showdown with Diabetes” wrote about this in an article called “Perceptions vs. Reality” (that article can be seen on the Internet Archive, with the original post URL at http://www.insulinfreetimes.org/itimesv600.htm). The long and short of it is that we as people with diabetes buy into this notion of “compliant” vs. “non-compliant” or “good” vs. “bad” and we really shouldn’t … but it is up to us to stop “congratulating” people for a good HbA1c (which is why I never share mine, nor do I ever comment when people write about this subject … that’s you’re own business, no one else’s. But its hard not to sometimes, when we have all this attention fixated on a single number … we need to rebel against it!

  5. August 20, 2008 9:11 AM

    Lee Ann: I definitely recommitting myself and I’m hoping my adjustments will yield some great results by my next appointment in December.

    Whitney: Thanks! I’m glad you are enjoying the blog. Welcome!

    Cara: Totally agree.

    Scott: I think positive rewards are important for people to feel encouraged to take care of themselves. Diabetes is such damn hard disease and when you work really hard, I think it’s important to congratulate people. What I *don’t* want to see is this demonizing of people who have A1Cs that are higher than our own. I wanted to use my story to show that just because someone has an A1C that went up doesn’t mean that they aren’t trying. One of the reasons I write my blog is to share what I go through, no matter what the numbers, so that others can see a reflection of what they are going through. I’m okay being a mirror. That doesn’t bother me.

    Those who are noncompliant – and there are people who are noncompliant no matter what people insist – usually have a deeper issue. It’s not about ignoring the number or pretending like it’s neither good or bad. It’s looking at the number, saying “This isn’t what you should want” and working *with* the person to find out what is going on and how to improve it. But all too often people are told to “shape up” and that’s the end of it. There are usually reasons behind the scenes that we are not aware of that is causing them to be noncompliant. Yes, they are noncompliant – but WHY??

  6. August 20, 2008 1:20 PM

    Allison

    I know what you’re saying is right, but that doesn’t really help me deal with the feelings.

    You’re spot on about non-compliance. For me that means way too many carbs. Mostly that’s because I’m stressed out, or I’m bored. I need to find another way to deal with those issues. Any suggestions?

  7. August 20, 2008 2:03 PM

    Bernard: Well, you should focus on why you are stressed. People who are overweight and stress-eat don’t need to be told to go on a diet. They need help figuring out how to deal with stress. I’m not a therapist, but perhaps if that is one of the causes, you might want to seek out counseling, in addition, activities like yoga or meditation often help people with stress.

  8. Betty Jackson permalink
    August 20, 2008 8:22 PM

    I have always said that the medical community has not dealt with the emotional side of Diabetes. It might be because they don’t know how but I believe they can learn. What your endo did was show compassion because she is aware of what it takes to live with Diabetes. Since there are not many like her we need to be supportive of each other. Having lived with this disease a lifetime has conditioned me not to share with others but I do know how to listen to others.

  9. August 21, 2008 3:48 AM

    Allison, that was a great post, and I can really relate to this a lot. :]
    and you’re right, life happens though, and no one’s perfect, but we’re doing our best to stay healthy for when the cure is found.🙂

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