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I’m Sorry, Doctor But I Take Exception to Something You Just Said

In the latest edition of the JDRF online magazine, Countdown, one of the Features is an article titled 16 Self-Care TIPS (Type 1 Positive Suggestions!) and has a few tips from 5 “experts” on living with Type 1 Diabetes.

4 out of the 5 experts actually have some decent advice, but I have to take serious exception to one of them.  Interestingly enough, he was the first of the five to offer his “tips” and he angered me enough that I almost didn’t even look at the other four; let alone the rest of the edition.

I’m taking exception with William Tamborlane, M.D. (read more about him here); he certainly has an impressive resume and has made incredible contributions in the field of diabetes care.  I do, however, have to take serious exception to tips #3 and #4; they certainly don’t seem to fall into the “Positive Suggestions” category.   Let’s talk about Tip #3 first.

Be a “Diabetes Honor Student” by acing your A1C test:
less than 7.0%= A+
7.0 to 7.5% = A
7.6 to 8.0% = B+”

Let me get this straight.  You are going to judge a diabetic based on a single number?  If you were to do that to me, I would explain to you in no uncertain terms why that is wrong.  Those explanations, by the way, are often followed by the words “You’re fired.”

Here’s why its wrong:  It does nothing to recognize what effort that particular individual has put into obtaining that “grade” or what extra things might have been going on that could have affected it.  For example, see my recent post What I Learned Being Sick for a rundown of what high stress, illness and a couple of “dubious” bottles of insulin did to my “grade”.

The combination of all those influences added a full percentage point to my A1c between December and March.  While I still would have been a “passing student”; the impression that I get, from the mere fact that you would recommend such a “grade” system, is that you would chastise me for that increase.

When the fact of the matter is that I was busting my rear to keep things under the best control I could.  I’m glad not all doctors are like that.  Mine certainly isn’t.  At my appointments, my doctor always asks me how things are going before we talk about “grades”.  Her response about my “grade” was basically “I think this X.X A1c is totally justifiable given the circumstances. “, she didn’t mention the full-percent point gain at all.

Overall, I see that type of “system” as simply adding yet another thing to feel guilty about with diabetes.  No one is perfect, we all have “good” days and “bad” days.

I already feel guilty about the worry my condition places on my loved ones, I certainly do not need another layer of guilt added.  Especially when it comes from someone who is supposed to help me manage a life-long condition, not make me feel like I’m failing based on a single number.

I’m the guy who has to walk out the door and do all those things to make that passing “grade” and honestly, it doesn’t really sound like you have the slightest clue what that entails.  Despite your incredible career, it makes me wonder if you actually just sit once in a while and talk to patients.

Now, for Tip #4

Stay optimistic. Getting diabetes is like getting dealt a bad hand in poker. You can cry about it or you can accept it and play it the very best you can. You’ll be surprised by how well it can turn out.

While staying optimistic is certainly an incredibly helpful thing; I believe it is the rare individual who can truly stay optimistic with any lifelong chronic condition.  It is all day, every day.  You seem to know that but don’t seem to have taken it to heart.

Every diabetic I know has suffered from “diabetic burnout”, usually more than once.  Recent blog postings by parents have even told heartbreaking tales of children as young as 5 “not wanting to be diabetic anymore”.

Yes, you have to do the best you can, but there are times when your best just isn’t good enough.   There are times when we HAVE to cry about it; when we have to vent.  Talk to other people who get it, who honestly understand; those who are walking the walk.  You, sir, I believe are merely “talking the talk”.

If we’re not optimistic at an appointment; would you chastise us for it?  Add yet more guilt and feelings of failure?

Overall, you don’t seem to see past the physical aspects of diabetes.  For me at least, the stress, guilt, depression and isolation of diabetes has really been what made me suffer with this disease.

We are more than a grade, Doctor, and I would challenge you to take that into consideration when dealing with diabetic patients in the future.  Especially ones who may be remembering how they were “graded” for a very, very long time.

How about a few tips from those of us out here actually doing it?  Just a suggestion…

Diabetes is nothing like a poker hand.

There are no “flops”, no “bluffs”, no “folding”.

We are always “all in”.

We “ante” with our lives.

 

©2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

  • http://twitter.com/Sarah_IGTS SK

    Very well said, Mr. Strange. :-)

    • Anonymous

      Thanks!

  • http://twitter.com/blogdiabetes Tony (BD)

    I think I understand what he was trying to convey, but it definitely comes off wrong. The grades are pretty accurate in terms of just where you fall and here’s why I kind of like his suggestions: They are completely realistic compared to the ADA who says everyone needs to be at 6% or whatever crazy numbers they came up with that someone without diabetes should have.

    The second part I completely agree with you and like your response. We don’t get to simply fold that shitty hand and go to the next one… we just die.

    These comments don’t really surprise me anymore when it comes from an authority that doesn’t actually have diabetes. Show me a T1 Doctor and I’ll show you more realistic and grounded comments.

    Thanks for sharing Scott!

    • Anonymous

      Thanks Tony. I just feel we need to call folks on things, otherwise things will never change. This has “The Law of Unintended Consequences” written all over it

  • http://www.facebook.com/TheGirlsGuidetoDiabetes Sysy Carolina Morales

    OMG very well written. I just left my doctor’s appt with a urologist who did not understand my having an off day with my blood sugars (I got the impression he didn’t understand that high blood sugars are often times unavoidable). I will be writing him a letter about it and about how his lack of knowledge about how difficult it is to manage blood sugars is very hurtful to those struggling enough as is. I’m not angry at him, I’m frustrated because of the widespread ignorance and how it doesn’t help us one bit. How would non-diabetics like to be graded on their ability to never make mistakes? How the hell would that turn out? Wouldn’t we all get a C, D, or F? Everyone struggles. Our struggle is just SO misunderstood. So thanks for this post, Scott. Every little bit helps.

    • Anonymous

      Thanks Sysy and you are totally correct that we need to take every chance to educate we can.

  • http://www.lemonadelife.com Allison Blass

    The problem with analogies is just that: they’re analogies. They’re not perfect. Yes, the “grading” system doesn’t work for everyone, but for many people, it puts it into a familiar context. Grades tell you how you’re doing. So do A1Cs. Grades tell you if you need to improve or if you’re doing good. So do A1Cs. It’s very hard to tell based on one reading or two readings or even 10 readings how well a person is doing. But an A1C? Yeah, that’s a pretty good judge of how things are *trending*. And I don’t think any parent would say “Oh you got a C? YOU ARE A HORRIBLE PERSON!” No, of course not. They would say (or should say) “OK, you’re struggling here. Let’s figure out what happened and work on it.” It’s especially important when there’s a change in the grade. Have you been an A+ student and all of a sudden you’re a C+? Maybe there are some new things to focus on. Or maybe you went from flunking to being a C student. Yes, you have room for improvement, but look how good you’re getting. It’s all about perception, and the A1C merely tells you where you fall. If being a C+ “diabetes” student is making you feel guilty, maybe that’s because you (the royal you, not you Scott) know that you can do better.

    You know, I was in the 8s for almost three years, and I kept coming up with reasons why I could “justify” it. I was traveling. It was the holidays. I was stressed. I was sick. I wasn’t exercising. After awhile, nobody gives a shit what your excuses are. I knew I wasn’t doing what I was supposed to be doing and I knew it was only making things more difficult for me. Sometimes, you do need someone to tell you to shut up and stop making excuses.

    (Again, not you personally, just the royal you).

    • http://strangelydiabetic.com Scott Strange

      Hi Allison

      If it’s being presented in a coaching manner, then it could possibly be of help. Coaches, IMO, do three things very well. 1) Give you a hand when you need one 2) give you a “good job” when you’ve done one and 3) give you a swift kick when you have earned one.

      From personal experience, I don’t put much value in an A1c. About a year ago, I had a 5.7. Grade-wise? Top of the class! What that 5.7 was actually comprised of were daily swings from 50 (or less) to 350 (or more).

      Thanks for the great comment!

  • http://profiles.google.com/geosim23 George Simmons

    “We are always ‘all in’.”

    SO effing true. Great post.

    • http://strangelydiabetic.com Scott Strange

      Thanks George

  • http://twitter.com/iam_spartacus Christopher

    With that closing line you should put on sunglasses and walk out of the camera shot as The Who play ‘Wont Get Fooled Again’. (This comment only works if you’ve seen 5 minutes of CSI: Miami)

    Either way, fantastic post.

    • http://strangelydiabetic.com Scott Strange

      I’d rather put on my sunglasses and drive off in my Mustang… think they’ll mind writing that in?

  • http://twitter.com/WhoMadeYouGreat Lala Jackson

    Bravo, great post.

    I had an endo (who I only saw twice) when I got insurance about a year ago that I almost had an all-out argument in her office with because she treated my like a lab rat in her clinic. It was truly amazing how little she listened to what I was saying and never ONCE asked if I had been sick or stressed, what I had been eating, had I been exercising, etc. She just ran calculations and told me to double my basal rate (yea… o_O).

    I did some major research after that and found a new endo who, in an online bio, had said that she grew up with a little brother who was diabetic. That was my key – finding someone who had at least lived alongside the disease.

    I feel like a lot of doctors should have just been researchers. They would have been able to do good work from a lab, but shouldn’t face patients.

    • http://strangelydiabetic.com Scott Strange

      Good for you, Lala. We all deserve to have people on our medical teams that treat us as people, not, as you say “like lab rats”.

      After all; they do work for us

  • http://profiles.google.com/kellykunik Kelly Kunik

    REALLY GREAT POST!
    We are more than just a number, a1c or otherwise. Grading systems are why many people never go back to their endo after the first visit!
    And as far as comparing me/us to having been dealt a bad hand in the poker game of life, screw that thought!
    We’ve been dealt an interesting, be it complicated hand that requires to do more work than most, but that doesn’t mean we don’t hit the jackpot!
    It does mean that we’re allowed to get upset from time to time, in order to pick ourselves up, dust ourselves off, and start the game all over again!

    FYI: Most diabetics I know have plenty of “aces up their sleeves!”

    • http://strangelydiabetic.com Scott Strange

      Thanks Kelly…

      What are these “Aces” of which you speak?

  • http://profiles.google.com/kellykunik Kelly Kunik

    Why the hell didn’t I show up as k2?

    • http://strangelydiabetic.com Scott Strange

      It’s picking on you

  • Anonymous

    Right on both accounts.
    It is actually good advice, though simplistic, to try to make the best of it.
    The poker hand analogy is terrible. Often the absolute best thing you can do with a bad poker hand is chuck it in and wait for the next deal of the cards.
    But this is my whole life. Yes, I am “All in.”
    Grading diabetes management based on the A1c is just stupid, for all the reasons you pointed out, and the failure to consider highs and lows, standard deviation, etc.
    Even if there were a valid reason to do grade the A1c, I wouldn’t use the numbers the way he did. Personally, I’ve seen my numbers come out better than that without what I would call an A+ effort.
    So, yeah, each of us is different at different times. A lot more needs to be considered.

    • http://strangelydiabetic.com Scott Strange

      Thanks, I appreciate the comment!

  • http://twitter.com/sarahmart sarahmart

    Awesome “tips” to close your post, Scott. Your statements gave me chills, in a good way, b/c they are so true. We *are* always “all in.” Great post.

    • http://strangelydiabetic.com Scott Strange

      Thanks Sarah!

  • http://profiles.google.com/pearlsa Pearlsa Nada Bintomani

    Great post, very well said.

    • http://strangelydiabetic.com Scott Strange

      Thanks Pearlsa!

  • Hallie

    Wow. I don’t like the grade analogy. A number is just a number. Sweets had a fantastic A1c in December. But it was because of lows. Way too many lows. I would have gotten and good grade… when the truth was that we needed to some tweaking. I don’t like putting that amount of pressure on one number. No one needs that.

    And Diabetes is like being dealt a bad hand in poker?!? You can reshuffle the deck in poker. Haven’t ever heard of that with D…

    I’ve been seeing this time and again on the blogs and in comments and tweets… I am totally in favor of the power of positive thinking. I don’t think you should sit in a corner and cry all day. HOWEVER, D sucks. Let’s get real. It does. NO ONE can be 100% positive about it 100% of the time. Many of us use our blogs and tweets to let off a little steam so we can go back to approaching things with a positive outlook. That’s ok. That’s more than ok. I think it’s healthy. Plus, telling the world all the time that Diabetes is no big deal by only focusing on the rainbows and unicorns doesn’t help anyone. You can have your times to cry about it- so you CAN accept it.. and then focus your energy in a positive way. Like advocating.

    Just my opinion… :) Great post!

    • http://strangelydiabetic.com Scott Strange

      Thanks Hallie, I totally agree. I’ve come to believe that we can only truly try to get some type of “acceptance” if we are honest about it. The Good, the Bad and Everything in Between.

      Of course, accepting it doesn’t mean I have to like it

  • http://profiles.google.com/sstrumello Scott Strumello

    I agree. HbA1c is not a grade, or even an accurate measure of how much a person is doing to manage their condition. As long as we can only control 4-5 of the 13-19 variables that influence blood glucose levels, patients do not truly “control” the disease, at best, we manage it.

    • http://strangelydiabetic.com Scott Strange

      And “manage” may be a stretch somedays… I swear it’s like living in a DMZ surrounded by mine fields

  • http://profiles.google.com/sstrumello Scott Strumello

    It occurred to me that perhaps a better grading system is the grade that an endocrinologist should get for YOUR HbA1c!

    • http://strangelydiabetic.com Scott Strange

      Well… then it would definitely be “our” fault!

  • Crystal

    Whoa with the poker analogy! Like.

    Great post. No one should be graded, unless they’re in school. Stay positive? Can we poke this guy, repeatedly? That makes me “feel” positive, that counts, right?

    • http://strangelydiabetic.com Scott Strange

      only if we use really pointy sticks…

  • http://www.shakenstirredstanding.blogspot.com Zita

    I have a few in the medical profession in my family and some which will remain nameless are the most clueless. Like others, love the poker analogy. My kid has no choice but to be play “all in” every day.

    • http://strangelydiabetic.com Scott Strange

      You’re right, Zita… there is no other option

  • Mike Hoskins

    As always, my friend, great post here. Love the poker analogies you offer there. I also don’t like the use of them as this “doctor” has done, and it does seem like this person is only talking the talk. I do agree with Allison on a point where she says sometimes you need someone to just tell you to STFU and do what’s needed. That’s kind of where I am at. But that doesn’t diminish the need to be able to vent and talk honestly, and how “you” should be able to go through those periodic times of burnout without feeling judged and less-worthy for it. That’s human and only natural. These days, I’m not feeling overly optimistic and have been feeling pretty down on myself overall – and it’s something I have chosen in part not to discuss because honestly I don’t want to bring others down. Including my wife. In some ways, I feel that D is winning and robbing me and it scares the hell of out of me. Some of that historic hopelessness I’ve felt before seems to be coming back, and interfering with my ability to just “do it” and actually do what’s required. It’s a vicious cycle, and most of it is mental. That is where I think the talking, coping, DOC support, and life-coaching aspects come in most handy and can help people. Glad to have you writing this, Scott. We ARE more than numbers or grades. So right on.

    • http://strangelydiabetic.com Scott Strange

      Hi Mike

      I’m sorry to hear you’re having such a rough go now, D is hard and it is draining. I believe all of us experience exactly what you are describing at one time or another. Probably multiple times, I know I have.

      You know, one of the things that I’ve found is that our loved ones do notice, but it is hard for us to see that when we feel down. I’ll betcha a cupcake that Suzi sees it and is waiting until you feel like talking about it.

      I wish I had some great words of wisdom that would make it all seem better, but I really don’t. We’ve been at this a long time and these things come and go, I hope yours goes sooner than later.

      You know where to find me if there’s anything I can do, my friend

  • http://www.diabetesdaily.com/johnson/ Scott K. Johnson

    Great post Scott.

    • http://strangelydiabetic.com Scott Strange

      thanks ScottieJ!

  • http://twitter.com/CureT1Diabetes Ellen H Ullman

    Standing ovation! Thank you.

    • http://strangelydiabetic.com Scott Strange

      Thanks, Ellen!

  • Beth2027

    Amazing! I am sad to think that there are doctors out there “grading” my test results. As for optimism, I try. Amd most times I am optimistic. But that doctor’s statement is just a glaring sign to show how much the mental side of living with diabetes is ignored.

    • http://strangelydiabetic.com Scott Strange

      And the mental side, for me anyway, turned into a bigger burden than the physical side as the decades piled up

  • C Buell48

    Wow – so glad my 12 year old son’s Endo is NOTHING like this Dr! Great Post! I am surprised he didn’t say “Well at least you don’t have cancer” Which has actually been said to my son before!

    • http://strangelydiabetic.com Scott Strange

      I hate those “at least it isn’t…” comments

  • Type I mom for 15 years

    Met a woman at the airport the other day and got to talking while waiting for our delayed flight. Turns out she’s had Type I for over 20 years and keeps her A1C in the 5′s. Guess that gives her an A++ and I was impressed until she told me she’d had her driver’s license suspended 3 times due to lows. I’ll take my son’s 7.5 – 8.0 range anyday

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