How To Talk To A Person With Diabetes

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When I was growing up, my parents had a book on their bookshelf called How To Talk So Kids Will Listen, And How To Listen So Kids Will TalkOddly, I never actually picked up, so I can’t tell you whether my parents put its tips into practice, but the title has always stayed with me. Recently, I’ve been thinking about its underlying message — that some methods of communication are better than others — in terms of the relationship between doctors and people with diabetes. 

I’m sure most of us have had an experience where a doctor — often a quite well intentioned one — makes an off-hand comment that causes you to feel a surge of unexpected rage. This happened to me just yesterday: I was at an appointment with a non-diabetes doctor and, upon seeing that my most recent A1c was 6.3%, said, “That’s pretty good for a diabetic.” 

I immediately felt my entire body clench up, and I couldn’t help myself from tersely responding, “I know” before crossing my arms over my chest — and it took me several minutes before my irritation had faded and I was able to continue the conversation politely. I’ve had similar experiences multiple times when speaking to doctors (or, worse, doctors’ assistants). Usually it’s quite clear that they mean their comments/questions as either neutral or positive — but I end up wanting to punch a wall. In fact, I get so angry that I figured it might be worth some self reflection — and I’ve come up with two primary reasons that I find comments like these so enraging:

1. It reflects an underlying assumption, common in doctor-patient relationships, that they a. know more than you do about your own condition and b. that they have the right to pass judgment on you based on extremely superficial information.

2. It does not acknowledge any of the work or effort that you have put into achieving whatever A1c result they are judging in the 99.999999999999% of your life when you are not sitting in a doctor’s office.

Let’s start with #1: I’ve had Type 1 diabetes for almost 14 years. I know what target A1cs are. I also know that in those 14 years, I have only been above 6.5% a handful of times, probably fewer than 7. I haven’t been above 7% since I was diagnosed. I do not need a doctor I’ve just met to tell me what a “good” A1c is, as if it’s the first time that I’ve heard the term. And I certainly do not need a doctor to say that my A1c — which, I will note, is below both the ADA and the AACE’s ideal recommendations for Type 1s — is “pretty good.” That is both condescending and incorrect. 

Which brings me to point #2: the same doctor (who ended up being extremely empathetic and smart, and whom I like a lot despite this particular moment in our interaction) has absolutely no idea what type of work I put into into achieving my A1c, whatever it may be. How could she? We had met about 45 seconds beforehand. On the one hand, this might mean I should cut her some slack. But on the other hand, I also would suggest that if you’ve known someone for less than a minute, you should be really, really careful about passing judgments on them — good or bad — based solely on something you see written on their record.

Like other non-endocrinologists that I’ve seen, she was surprised that I would test my blood sugar more than four times a day (try upwards of 12, plus wearing a CGM). She didn’t understand, until I explained it, why I would be doing injections for mealtime insulin if I also have an insulin pump (as noted in my previous post, my insulin pump does not absorb as well as I need it to, and injections are working better). When I told her I try to severely restrict carbs in order to manage my blood glucose, she said, “Oh, you can eat carbohydrates!” in a way that was meant to be reassuring, but missed the point that after 14 years of life with diabetes, I know what carbohydrates do to my blood sugar, even complex ones, and I have determined — through years of trial and error — that no, I cannot eat carbohydrates and expect to have blood sugars that result in a 6.3% A1c. There are people who can get away with oatmeal; I am not one of those people. Nor did she, like most doctors, seem aware of the dozens of variables that can affect your blood sugar (see Adam Brown’s recent round-up of 22 of them). 

It also occurred to me that it is not a good idea to pass judgment on someone’s A1c — positive or negative — if you have no idea what their previous values were or what is going on in their life at that moment. Let’s say that I’d been coasting along for a couple years at 8 to 9%, and I had been working my butt off to get my A1c under 7%. How demoralizing would it be to have someone describe that achievement as just “pretty good”? This is similar to what it’d be like to make a comment on someone’s weight (“150 pounds isn’t too bad”) without any awareness that they’d just lost 150 pounds. Conversely, let’s say that my A1c were to be higher than normal — what if it’d jumped from 6.3% to 7.5%? That fact itself would make me feel horrible. If a doctor greeted me with criticism, I wouldn’t want to work with them. I’d totally clam up. 

And that gets me back to the point of this post: I wish that there were a diabetic version of that parenting book, titled How To Talk So Patients Will Listen, And How To Listen So Patients Will Talk. And I wish it were mandatory reading for all endocrinologists, primary care doctors, certified diabetes educators, and every other healthcare professional who comes into contact with people living with diabetes. 

It would point out that if you want to reach your patients and work with them, you need to not make them feel like they’re being judged every time they come into your office. Instead of starting conversations with a judgment (“That’s pretty good for a diabetic”; “Your numbers look like they’ve been all over the place”; “You need to be better controlled”), you should start with an open-ended question that lets the patient take charge of the conversation. Try something like, “How are you feeling about your diabetes?” Or “What would you like to talk about today?” Or even just “How are things going?” or “What would you like to work on together?” If your patient is at all involved in managing their diabetes, they will have answers to your questions. If they don’t, then you have found a good place to start. Either way, it’s a gentle, non-judgmental conversational technique that will encourage patients to open up, rather than shut down. 

I should emphasize, too, that even positive judgments can come across badly if you don’t know the person or their past medical history. I know that this particular doctor meant the “pretty good for a diabetic” line as a compliment — but that is most definitely not how I took it. I’ve also had a doctor respond to my concerns about having difficulty managing my blood sugar after breakfast by saying, “Oh, but Catherine, you’re doing fine compared to most people” before refusing to talk about it further. What I should have said was: “Yes, but I am not most people, and I am upset. You are my doctor, and I come see you in hopes that you will address my concerns, not brush them off.” Instead, I ended up crying in his bathroom.

Again, yesterday’s doctor was an extremely smart and empathetic person, and I actually look forward to seeing her again. But I think that all doctors (and for all conditions) could learn a lot by respecting the fact that while doctors may be experts in their particular area of medicine, their patients are the experts in life with their own disease. They know, more than any doctor ever possibly could, what it’s like to actually live with their diabetes day-to-day. They know what their frustrations are. They know what level of work they are putting into their diabetes management (and they know if they could be doing more). They know what today’s test results are in comparison to the past.

So doctors, please! Don’t start “conversations” with judgments. Try to recognize your patients as experts in living with their disease. Try to avoid making pronouncements without any knowledge of your patients’ home life or past experiences. And recognize that it is really freaking annoying — infuriating, actually — to have a stranger make passing, casual judgments on a number that you struggle to achieve every day. Instead, try asking open-ended questions about your patients’ experiences, and actually listen to them — and see what a difference it can make.

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Catherine
Catherine

June, I’m not sure why I’m not having trouble with basals. I may well still be occasionally infusing them into scar tissue, but it seems like less of an issue (perhaps because the amounts are so small relative to boluses?). My take is that injections of rapid-acting insulin work better for me than pumped boluses of rapid-acting insulin — but that pumped rapid-acting insulin works better for me as a basal than long-acting insulin by injection. I think it’s all about experimenting (ideally with the approval/input of your doctor!) to find out what works for you. 

June S.
June S.

Thank you for another great article! I have a question with regard to your mention of currently taking boluses by injection, and using your pump for basals only. I have been pumping since 2007, though I was diagnosed with Type I in 1972. I have gone off the pump altogether for as long as a month at a time, in hopes of restoring some of the fatty tissue that seemed to have difficulty absorbing insulin. That meant ONLY injections, for a month, and no pumping of insulin whatsoever. Assuming you’re injecting because of scar tissue, how is it that your… Read more »

Rick
Rick

Very good post.  Much like yourself Catherine, my A1c has not gone into what is suggested as a dangerous level in over ten years as a type-1, however, when I began getting what I could only describe as a numbness to the left side of my head a rather overweight, and clearly on the way to type-2; which I believe is now the case, doctor said: ‘you’re diabetic aren’t you?’ When I confirmed this he immediately replied that I needed to ‘tighten up my control’.  No other assessment or questions needed. I somehow managed to withhold the urge to punch… Read more »

Mike R
Mike R

I have had good relationships with my medical team, though I stopped seeing an internist years ago who scoffed at the effectiveness of my new insulin pump. He wasn’t entirely wrong, but I felt that I deserved a positive endocrinologist versus a sceptic.  My bigger interpersonal issues tend to be with my childhood family and in-laws that wonder why I have to eat on a schedule.  “Can’t you just drink a Coke if you need to?” is the comment that I have heard too many times as they snack their way thru meal times. I guess you have to live with the… Read more »

Jeff

Spot on! Awesome synopsis!  I was diagnosed T2 in ’93 and fired an endo and nutritionist from my health team for knowing less about diabetes than I did. Mostly I’ve been blessed with excellent care through the VA. A different endo made a thoughtless comment when learning that on top of very high insulin resistance, gastroparesis and celiac, I also have food allergies. In fairness, there was an immediate apology, although it didn’t really take the sting out of the comment “You’re an endocrinologist’s nightmare. <shocked pause> I mean, your symptoms!” It never ceases to amaze me at how…what’s the… Read more »

Jeff

Spot on!
It never ceases to amaze me at how…what’s the polite term?…stinking clueless some so-called professionals can be. I expect such commentary from folks who don’t deal with chronic illness (of whatever stripe, whether personally or via care giving).  There’s really no excuse for such behavior…
Except perhaps the “they’re human” one. Kinda hard to get past that. I freely admit that I have symptoms of foot-in-mouth disease…or maybe it’s brain-disengaged syndrome. Nah, probably a dual diagnosis there. 

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