That Question Tells Me You Don’t Understand Diabetes

Based on some of the questions they ask and things they say, healthcare professionals outside endocrinology don’t really get diabetes. [1]

For example, consider this question: “How is your control?”

Nobody can “control” blood sugar because only a pancreas can do the job, so they’re effectively asking, “How skilled are you at doing the complicated job that your pancreas should be doing?” This is probably why my spine stiffens (literally) when someone asks the question, and why the first thought through my head is, “You don’t know me and what I do.”

Beyond the fact that the question is unconsciously oriented toward judgment, my main problem with it is that it doesn’t elicit anything meaningful. If I say “good,” what does that mean objectively? How is the answer to this subjective question trackable or comparable between patients in a meaningful way? How will that help you with your decision making? Do you want an average? a standard deviation? a range of typical values throughout the day? the percentage of “in range” values? What do you want to know? [2]

Lately, I’ve been consciously answering this all-too-common question with two answers. “Well, my last A1c was x. And nobody can control diabetes—it’s a difficult disease—but I’ve been getting better at nudging my BGs in the direction where I want them to go.” Even though A1c isn’t a perfect measure of how hard I’m working or the numbers I get, the first part of the answer is one way to make the subjective more objective, trackable, and comparable to indicators. The second part of the answer is a subtle, quick, nonthreatening bit of easy-to-digest advocacy.

I’m asked other questions that are more objective but not very useful in isolation. “What was your last BG reading? What are your fasting BG numbers?” I answer these the best I can along with a bit of context and the occasional, “That’s really not a good question to ask about type-1 diabetes.” If they ask, I usually recommend A1c or the 2-week average as better metrics.

But to say that I was unprepared for the otolaryngologist’s “Are you brittle?” question yesterday is an understatement. No one has ever asked me that before. I didn’t know any doctors still thought about that word, much less said it aloud.

My initial reaction was stunned silence while I collected myself and thought about how to approach this. I lied a bit, “I don’t know what that term means?” I do know it means. It means you’re uneducated about diabetes. But go on. [3]

“Brittle diabetics have wild swings and trouble controlling their sugars.”

Yeah, that’s what I thought you meant. “Well, I have diabetes, and I’m getting better at influencing where my blood sugar goes, but nobody can really control it. My last A1c was 7.3.”

“Do you have wild swings?” Really? We’re going to play this game. Okay. Eventually, I figured out that he wanted to know whether I would be able to cope with the wicked high blood glucose that usually accompanies a heavy dose of steroids, so is better to decide to use other kind of steroids for fitness purposes, if that is the case why not try these out, which help having a better athletic performance and can be found online. Along the way, he asked about the least variable of all measurements: fasting BG readings.

After I said that I didn’t want a powerful steroid unless it was absolutely necessary to bring my hearing back, we settled on a nasal steroid (fluticasone), maximum strength decongestant, and trying to equalize the pressure in my ears by pinching my nose and gently exhaling. (I’m so happy to say that it seems to be working already.)

Don’t get me wrong. I don’t expect every doctor to be an expert on diabetes. I want an ENT to be extremely knowledgeable about ear, nose, and throat problems. But diabetes is not an uncommon disease, and a conversational level of familiarity with it is in order. The questions that doctors ask about conditions they don’t completely understand impact how trustworthy I perceive them in their own specialty. (Not to mention whether I ever want to return to their practice.)

Since healthcare professionals seem to get diabetes wrong so often, I think we need to do something about it. Doctors and their staff probably aren’t going to read this post, so it must go beyond my kvetching here. Perhaps a pamphlet entitled “How to Talk Intelligently about Diabetes.”

Who wants to help me write it? If you do—or if it already exists—leave a comment and we’ll make it happen.

1 — Some endos and their staff aren’t immune to this failing either. Fortunately, I haven’t had that problem.

2 — I’m guessing most people don’t know what they want to know. They just need to write something down in the chart and have a “basis” for critiquing or complimenting the patient.

3 — Everything about this doctor was anachronistic and wrong. He just started putting instruments in my ears and nose without telling me what he was going to do. One of these was rather pointy, and I would have liked to know it was coming. He didn’t tell me anything about what he saw or thought during the exam. He started to write prescriptions for me without discussing his diagnosis or involving me in the treatment plan. I had to ask him how to prevent this problem in the future, and his “answer” was to hand me a pamphlet written in 1978. (No lie!) And he ordered a test without telling me for the followup visit (which I’ve already scheduled with a different practice).

This entry was posted in Diabetes. Bookmark the permalink.

2 Responses to That Question Tells Me You Don’t Understand Diabetes

  1. Scully says:

    Oh you know I’m in for writing a pamphlet. Can we use swear words? just kidding.

    I am amazed when I hear stories like this. My regular GP doesn’t ask me more than, “How have you been doing with your diabetes?” and I appreciate that. She has no clue.

    Perhaps it’s the stereotypical doctor attitude to know everything or at least pretend to.

    And who are WE to tell them how it is? well, quite frankly, nobody else will!

  2. StephenS says:

    Jeff, I like reading your posts! I can only give you a few quickies that I get from my endo at every appointment. And they’re pretty obvious:
    Do you notice that you’re sugars are abnormally (important to qualify) high at the same time every day?
    Do you notice that your sugars are abnormally low at the same time every day?
    Have you made any changes to your regular routine in the past __ months?
    How is that working?

    Best of luck… if I think of any more I’ll let you know.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>