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The Myth of the Noncompliant Diabetic.

May 7, 2008

Some people think that an uncontrolled, noncompliant diabetic (said with the deep, dark voice of death) is just a myth that endocrinologists and diabetes educators use to make all of us feel like no-good delinquents who should be serving time in some kind of diabetic corrections facility.

But the truth is it isn’t a myth. Noncompliant diabetics do exist.

A high A1C always strikes fear in the hearts of people with diabetes the world over. Accusations of lapses in testing, not enough record-keeping, too many SWAG boluses and not enough sound nutrition are common among doctors. Have you ever had a doctor ask you, “Why were you 247 mg/dl on October 4?” But even if you do test regularly, take your insulin, try to exercise often, and attempt to count carbohydrates the best you can considering we eat in a society that up until recently prided itself on keeping nutritional content hidden, you can still have crappy blood sugars. It’s a fact of life. We all know that not just insulin and food influence blood sugars. I know this, you know this, and even your doctor knows this (even if he won’t admit it).

We have to move beyond the idea that an uncontrolled and/or noncompliant diabetic is someone who has an A1C outside of recommend levels or forgets to test their blood sugar or eats cupcakes. It isn’t the person who is suffering from neuropathy after thirty-eight years of diabetes, with half their time managing diabetes coming before modern tools like glucose meters, insulin pumps and fancy-schmancy insulins. It isn’t even about being burned out from diabetes, because you can hate diabetes and still manage it. Being burned out can lead to noncompliance and consistently high blood sugars, of course, but plenty of people are tired of diabetes and still do the best that they can.

Not perfection. The perfect diabetic is the myth.

Your results don’t make you noncompliant or uncontrolled. It’s what you do that matters.

The uncontrolled, noncompliant diabetic is someone who knows exactly what they are supposed to do and refuses to do it. The person who looks at the requirements to test blood sugar 4-6 times a day, to count carbohydrates or at least make an educated guess, to wear an insulin pump or keep insulin pens with them and they say, “I’m not going to.”

It is this – the complete forfeiture to manage this frustrating disease – that makes someone a noncompliant diabetic and leads to uncontrolled diabetes. They do exist. But if you are reading this blog, if you are sitting there thinking, “I really want to take care of myself and I am trying to do this the right way” then you are not a noncompliant diabetic. I believe that to control your diabetes means you are controlling your attitude and actions – not your test results.

Sometimes life gets in the way of diabetes and that’s okay. Sometimes you forget to test when you’re on vacation, sometimes you just can’t figure out how many carbs are in your Aunt Carol’s casserole, and sometimes you just can’t help eating the entire bottle of honey during a 3 a.m. low. What matters is that you recognize that it’s going on and you try to fix it. Even if you’re not successful on the first try, or the second try or the nine-hundred and twelfth try. As long as you are trying to do your best, you are doing great.

That’s really all you can ask for.

22 Comments
  1. May 7, 2008 4:46 PM

    Allison, what a wonderful post. Thank you for saying this!🙂

  2. May 7, 2008 5:08 PM

    This is so very true. Doing your best, doesn’t mean being perfect. I thank you for writting this.🙂

  3. May 7, 2008 5:15 PM

    Great post Allison.

  4. May 7, 2008 5:48 PM

    Yuppers. I agree with all of the above.
    Once, I saw an internist who (silently) took a red pen out of his desk and circled all of the numbers on my log that were our of range, then threw it back at me.
    Rather then cry in the office (saved it for later), I switched drs. and moved on.

  5. May 7, 2008 5:49 PM

    I love the little quilt thinggys – fascinating.

  6. May 7, 2008 5:57 PM

    Thanks for this. It’s exactly what I needed to hear today. And if you really want to know, I consider myself a stubborn diabetic. 🙂

  7. May 7, 2008 5:57 PM

    Where were you, let’s say the first 10 years of my life with diabetes?! I wish I could go back to all of the horrible endos who told me differently and give them this to read.

  8. MeadowLark permalink
    May 7, 2008 6:35 PM

    Thankyou for letting me be human and diabetic. I’ve had two horrible months of emotional swings with courtdates and my oldest son in fostercare due to a high medical/mental health need. My Dr doesnt even understand.:( sigh.. dont matter as insurance runs out the end of this month.. I’ll be doing the best I can as I did before the insurance came along. it’s just nice having the support and be allowed to be human and diabetic.
    Huggles:)

  9. May 7, 2008 7:38 PM

    I agree; you deserve a home soda-machine filled with Diet Coke as a reward!

  10. May 7, 2008 8:09 PM

    Amen sister!

  11. May 7, 2008 8:27 PM

    That’s definitely something I need to read everyday. What a wonderful post!

  12. May 7, 2008 9:47 PM

    Great post Allison.

    I’m going to pass it on to my endo and my CDE (who are both really good).

  13. May 8, 2008 8:27 AM

    Allison,

    Great post. I’ve often kept my mouth shut when people say there is no such thing as a noncompliant diabetic. But now I’m going to say, yes there is. I’m a nurse. A big part of my job is teaching people. I have PWD who can spout off exactly what they should be doing, but they never do it. An occasional slip up or indulgence is OK. It’s the people who day in and day out do not care for there diabetes, not because of ignorance, but because they simply do not want to.

  14. May 8, 2008 8:27 AM

    I believe that to control your diabetes means you are controlling your attitude and actions – not your test results.

    Amen – I should tape that quote to my meter. Because lord knows it’s nearly impossible to control those test results sometimes…

    Great post!

  15. May 8, 2008 8:28 AM

    oops forgot to turn off italics at the end of your quote : P

  16. August 16, 2008 11:28 PM

    While the non-compliant might claim they don’t care and present as ambivalent, I think they either really do care, but they’re either in denial, or they actually don’t care and that makes them actively or passively suicidal. A person who has zero regard for their well-being and living is by definition suicidal, and a suicidal person doesn’t necessarily present as overtly depressed. Denial, on the other hand, is our mind’s way of protecting us from thoughts, feelings and experiences that are too painful to process. Either way, there is something psychological going on with a non-compliant diabetic, and just because it’s not obvious to anyone and everyone doesn’t mean it’s not a problem for which the person should seek psychological help. Also, denial is not the same as a knowledge deficit. I have clung to being knowledgeable about diabetes since I was a pre-teen, and knew the potential consequences of being non-compliant. Even during my years of non-compliance, I spent time educating myself about diabetes. Intellectualizing is just another psychological defense that doesn’t necessarily equate to behavior change. That’s what’s so frustrating to me when a non-compliant diabetic is written off because they “know what they’re supposed to do and just won’t do it.” People like Barbara Anderson, Richard Rubin, and William Polonsky have made careers out of trying to understand the psychological abyss between acquiring knowledge and applying it.

    I know more than I wish I knew about non-compliance, and my own personal experience with it has been the result of both depression/suicidality (both active and passive depending on when we’re talking about), and denial. Not to say that my experience is the end all be all, but having been there done that and somewhat miraculously come out the other side, I have some insight into how those experiences drive (or detour) decision making.

    I could spend the rest of my life researching the psychological sequela of diabetes. There’s nothing more fascinating to me than why all of us do what we do to stay on top of this illness. Knowledge is such a small piece when everything is said and done, IMO. Once you have that, it’s a lifetime of staying motivated that ultimately determines outcomes.

    Now, if only I could learn not to write so damn much….

    P.S. I didn’t mean to imply that all diabetics are either good or bad. In the end I think we’re ALL trying as hard as we can. The non-compliant among us just haven’t figured out what their barriers are and how to work around them, and that’s why it appears like they’re not trying.

    • Karen permalink
      January 21, 2010 11:25 PM

      It was great to read these comments. I have a 17 year old step-son who is noncompliant. He was just released from the hospital, his sugar had been at about 700 for about a month, that’s what the doctors guessed. He won’t check his sugar or take his shots (unless he thinks he needs them). He was going into renal failure when the ambulance brought him to the hospital. He flat out told the docs he didn’t care, he wasn’t going to check or do shots. We are scared and frustrated, we have no idea how to help him or get him help. I don’t want to watch him die, or go blind, or have to go on dialysis, or all the other things that can happen. If anyone has any suggestions I would be eternally greatful.

  17. September 28, 2008 8:55 AM

    I’ve got a diabetic foot doctor that makes me feel this way everytime I meet with him. He’s a good doctor but he keeps telling me that he’s eventually going to amputate my left small toe one day and there’s no hope even if I keep my sugars in balance. Although it wasn’t always the case, my A1C is actually 5.8 right now and it’s hardly encouraging if he keeps telling me there’s no hope for me. It always feels like he has a bug up his butt.

  18. Evette permalink
    July 30, 2009 9:39 AM

    My primary care doc says he is going to “discharge” me from his practice because I am non-compliant. “My efforts to help you have been feutal”, “maybe someone else will be more effective in motivating you.”

    “Maybe you lack the skillls to help me”. His only suggestion: Do better. Apparently, he does not want to be bothered by me or he is sadly unaware or unwilling to accept the notion of a non compliant patient. Either way, it makes me feel like shit.

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