What Gets in the Way

The other bit I wanted to share from my day at the Behavioral Diabetes Institute was our discussion of what gets in the way, i.e. why do many patients so consistently neglect their diabetes?  That is, the first hour of my time at the BDI was spent in a “provider” session sharing concerns with a group of people including CDEs, psychologists, nutritionists, and reps from BDI sponsor Roche Diagnostics.Excuses_1

The topic du jour was what to do about the many, many patients that seem to “fall off the map” by not coming in to see their doctor or diabetes educator for months or even years at a time.  Most of these are Type 2 patients, out in areas of the country where a doctor’s office is much more than just a 15-minute jaunt to the nearest office park.  Yet the providers puzzle over why these people don’t seem to understand or care about the state of their own health?  One woman sitting behind me kept using the “NC” word, i.e. “non-compliant,” which made my skin crawl.

Why aren’t these people motivated to achieve a long and healthy life, you ask? They are, of course. Everyone wants to live well. The trouble is many-fold.  As I discuss in my newest dLife column, most patients are on the “do-what-your-doctor-says” or “try-to-do-everything-at-once” diabetes treatment plan, which both tend to lead to inertia, because: 1) diabetes requires dynamic day-to-day management, rather than minimal check-ins with your doctor just 3-4 times a year; and 2) trying to make drastic lifestyle changes can be incredibly overwhelming and frustrating. Agree?

On top of that, Dr. Polonsky identifies three things that prevent people from actively caring for themselves:

* diabetes invulnerability — the old “I feel fine, so I must be fine” approach

* diabetes vulnerability — the flipside, as in “I’m doomed anyway, so it doesn’t matter what I do”

* life gets in the way — there’s so much I’m supposed to do, “I don’t have time for all this”

Even though my Type 1 diabetes DEMANDS my attention, I see a little of myself in each one of these statements.  They also help explain why my own father did so little for his diabetes for so many years.

I wish to God I could send out a free copy of our new book to every single person in America caught up in these excuses.  But then again, they’d have to be motivated enough to read the thing and then actually do something about what they read.  Longshot, ay?  So the best we can do, I suppose, is some sort of buddy approach in which very one of us who’s plugged in to caring for our diabetes — no matter how much we might be struggling — should try to grab one other person who’s doing little or nothing and help shake them up a bit.  Because if they’re not part of the solution, they’re part of the problem: on the direct path to the diabetic complications whether they realize it now or not.

I’m on my soap box, I know.  But diabetes is a do-it-yourself (DIY) proposition for sure.

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11 Responses

  1. Scott K. Johnson
    Scott K. Johnson January 16, 2007 at 8:02 am | | Reply

    You know, I too see myself in all three of those statements.

    As you say, it’s a dynamic day-to-day thing, so how I deal with it can (and does) change often.

    Another trick is to realize if you are sliding backwards, and to catch it and correct course.

    Great dLife article too!

  2. Zazzy
    Zazzy January 16, 2007 at 8:24 am | | Reply

    I’m going to add the indifference of the medical community, at least to some degree, to the list. Over the years, the very great majority of newly diagnosed type 2s I spoken with have not gotten any real education from their doctor. “Take these pills and don’t eat sugar or pasta,” is what many are told. A significant number are not given or taught how to use a glucometer. We are not given information about complications, dka, hypoglycemia, carb counting, exchanges, or treatment options.

    Most of the people I know, including myself, had to seek out the information, find our own support groups, insist on referral to a dietician or do it (and pay for it) ourselves. We had to learn to advocate for ourselves in a culture where one takes the pill that is prescribed without question. If your primary care physician is treating your diabetes like it’s any other “take a pill” disease, how do you know to treat it otherwise?

  3. Tom
    Tom January 16, 2007 at 8:28 am | | Reply

    Amy:

    I agree, self-management of YOUR Diabetes can be rewarding and frustrating .. I like your idea of a buddy system .. the check and balances of your self-management …

  4. Jenny
    Jenny January 16, 2007 at 10:00 am | | Reply

    I agree with Zazzy’s statements. A friend was recently diagnosed with type 2 and sent home from the doctor with a PRESCRIPTION for a meter that she could send in to a mail order company. NO METER, NO EDUCATION, NO PLAN…just a prescription to send in! I was outraged. This is treatment that is radically different from how it was handled when my type 1 child was diagnosed. But on the other hand, I work with one of those “non-compliant” type 2′s. He’s been diabetic awhile, and I keep trying to (nicely) help him get motivated, sharing magazines I subscribe to, talking about the latest treatments, and he tells me about how he has a meter at home that he hasn’t even taken out of the box!

  5. Jonah
    Jonah January 16, 2007 at 11:35 am | | Reply

    I don’t see a point to seeing my doctor more often than is necessary to get my HbA1c and update prescriptions. I spend all day every day thinking about and worrying about my diabetes, and I don’t feel that he could have anything to really add. I check my blood sugar an average of eight to ten times per day and my most recent A1c, last week, was 6.5. I spend hours every week on websites learning about diabetes- what do I need the doctor for?
    When I was diagnosed, I was kept in the hospital for days after I was fine and would have checked myself out had I been 18, and legally allowed to go against doctor advice. I do not feel that the extra days in the hospital helped me.
    My doctor’s current advice to me is to check my blood sugar less frequently. NO THANKS!
    Seeing doctors just means that somebody is going to meddle with what works just fine for me.

  6. Jennifer
    Jennifer January 16, 2007 at 1:45 pm | | Reply

    As a type 2 and living with my mother who was diagnosed as type 2, I see, especially with her, that wall that says that all type 2′s are fatties who’ve eaten too much and now they’re sick. No one wants to help her, no one wants to touch her or reach out.

    We have an epidemic in this country (as well as in the USA) of people who are overweight/obese and NO ONE who wants to help. It’s always “have a little restraint” and never “let’s do a walk or have a marathon for type 2″. When are people going to treat this insidious disease the way they treat cancer? I’ll bet diabetes kills more people, but because diabetes isn’t “trendy” or “sexy” it doesn’t matter. It makes me sick that no one seems to care. We need to get our countries in shape and educated about diabetes!

  7. Steve
    Steve January 16, 2007 at 10:14 pm | | Reply

    As a type 2 diabetic who lives in an extremely remote area, I can vouch for the problems facing a diabetic in regard to non-compliance.

    1) It’s damn near impossible to get acceptable food in the grocery store.
    2) It *is* impossible to get good food in a restaurant.
    3) Our population is rapidly aging in rural areas, with the result being there are numerous older people with diabetes. Many of these have told me they don’t have the energy to keep up with all the things they need to do to care for themselves, and figure they are going to go anyway – in other words, they are fatigued and possibly depressed, and they just no longer care.
    4) It’s not like living in a city where you can just drop by a big clinic any time. Due to the same issues in point three, our small clinics are overwhelmed with patients, and it’s not getting better because it’s hard to attract good doctors to rural America.
    5) The residents of rural America are of a lower economic class than other parts of the country.
    6) Rural American encompasses most of the South, where diabetes is rampant.
    7) Rural America has a different set of eating habits. Period.
    8) In rural America you pretty much drive everywhere due to the long distances between things. That sharply reduces the amount of exercise you get on a daily basis. As an example, when I lived in Chicago, I walked nearly 3 miles per day, just going back and forth to work. Here, I walk 10 steps to my truck, and park 20 steps from the office door. My diabetes was much better controlled in the city, I believe due to the additional exercise I was essentially *forced* to get on a daily basis.
    There are lot more. But these are the major factors from my personal experience.

    Could I take steps in regard to these items? Perhaps. But think about it. How would *you* do if you faced all these additional issues *in addition* to what you area currently doing? It’s all about diabetic fatigue. That just my opinion. I am saying without equivocation it was easier for me to control my diabetes in an urban environment due to these factors.

  8. Michael Park
    Michael Park January 17, 2007 at 6:05 am | | Reply

    It’s so true, all the excuses people come up with are generally one of those three when it comes down to it.
    Rather than post my variations on these three, I’ll just say how frustrating it is to know the importance of the care, and to know that it far outweighs any supposed excuses, but still to get caught up in believing those same excuses.

  9. Chrissie in Belgium
    Chrissie in Belgium January 17, 2007 at 12:43 pm | | Reply

    I really like your buddy-plan, the problem is that the less active D person has to WANT to improve his control. You cannot force this on a person. So why don’t you want to improve control? I think often the task is so difficult that you feel defeated and thus give up. The job never ends and you never get it really right. One has to work like mad and be happy with “sort-of” good results. How can one be a perfectionist and NOT a perfectionist at the same time? You have to be a perfectionist to keep trying, but one is suppose to accept mediocre results!

  10. Melitta
    Melitta January 18, 2007 at 1:16 pm | | Reply

    I was diagnosed with Type 1 diabetes in 1995, at age 35. Prior to my diagnosis, I knew several people with Type 1 who took TERRIBLE care of themselves. And their actions impacted me–I was with one in a remote area of the country, accessible only by 4WD (the ambulance couldn’t make it in), when she had a severe near-death hypo. I think that people that were diagnosed with Type 1 were told they were doomed, and as a result did not take care of themselves. Me, I vowed to be different from the Type 1′s that I knew, and so far I have. But I must say, after 12 years I am feeling some fatigue and lack of motivation (despite my continued excellent care). It is a complex matter.

  11. manny hernandez
    manny hernandez February 1, 2007 at 4:42 am | | Reply

    Amy, everybody:
    I would love to hear your thoughts on this:
    http://manuelhp42.blogspot.com/2007/02/video-about-diabetes-awareness.html

    Your feedback would be appreciated.

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