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Lies.

I used to lie to my pediatric endocrinologist.  (Not proud of this.)

She’d sit at her desk and look through the logbook with all my blood sugars mapped out (this was back in the day when my mom and I collaborated on logging my blood sugars, which meant that they were often accounted for), sometimes with a furrowed brow.

“So there are a lot of higher numbers in the morning, after breakfast.  Do you think we need to look at that morning insulin:carb ratio?  Maybe that needs some tweaking, to help with these post-breakfast numbers.”

There was a good, full year (or two) when I was a teenager wherein I would meet with my pediatric endocrinologist and have these strong, intelligent conversations about blood sugars and ratios and numbers.  She and I would crunch numbers and make changes, all in pursuit of lowering my A1C (which, as a teenager, swung wildly).  I talked the talk.  I sounded like a gave a shit.

But in reality, I was lying to my excellent doctor.  I was wasting her time.

I would show up for my appointments in full-swing teenage diabetes rebellion, knowing exactly why my post-breakfast numbers were such shit but still not able to admit to my endocrinologist that the reason my blood sugars were high after breakfast was because I was too lazy/disinterested/foolish teenager to properly count my carbs.  I was a very privileged teenager in that I had access to excellent diabetes care at the Joslin Clinic, a stash of insulin and glucose meter test strips in my bathroom closet at home, and a family that was both interested in and dedicated to my health and well-being.

So why the hell was I lying to my endo?  Why was I fifteen years old, talking with my kind endocrinologist about numbers that looked dodgy on paper but weren’t entirely riddles wrapped in mysteries – these numbers were the product of actively distancing myself from the responsibility of diabetes self-care.  The answer was clear – the insulin:carb ratios were probably fine and I was just SWAG-bolusing – so why wasn’t I fessing up and saving my endo the effort of trying to find “a solution?”

Yesterday, I was in Minneapolis, Minnesota giving a keynote presentation at the Annual ICSI Colloquium on Health Care Transformation and part of my talk was about how – and why – patients sometimes lie to their doctors.  Like when I lied to my peds endocrinologist about my post-breakfast blood sugars, or how I’ve also lied about how much regular exercise I was getting throughout the course of a week. (“Exercising every day?  Yes!  With bells on!  Um … weighted bells!”)

These lies aren’t told to in efforts to be malicious, but more because it’s hard to admit failure, especially to people I respect.  It’s also hard to admit it to myself.  I liked my pediatric endocrinologist very, very much and I didn’t want her to think my lack of diabetes follow-through, at times, was because I was a bad person.  It was hard to explain to her how much I wanted her to like working with me, and to be proud of me, as part of our patient-HCP relationship.  It was hard to explain why I ignored the daily duties of diabetes sometimes, even though I didn’t want to ignore them.  It just didn’t make sense.  A lot of the time, I didn’t want her to think I was a jerk, like I was wasting her time or something (even though the lies did waste her time – it was a vicious cycle).

“The reason it’s easier to be honest with my endocrinologist now is because she views my pancreas as non-compliant, not me.” I told the ICSI group.  “As a patient, I didn’t want to disappoint my doctor.  It took a long time to realize that the lies didn’t help improve my health.” (More on the emotions behind diabetes and the word “compliance” here.)

Embracing honesty with my current endo has been difficult, but necessary.  I’m able to tell her when I’m going through diabetes burnout, or when I’m skimping on different aspects of my self-care.  It took a long time to make me feel as though honesty was the best policy because it actually enabled my doctor and I to address the things I needed help with, instead of pretending that everything was fine.  I wish I had been as forthcoming with my pediatric endo as I am with my adult endo, but it’s still hard, even now, to look her in the eye and admit the stupid mistakes I make.  Maybe that’s part of the “growing up with diabetes” education curve, learning that I can’t aim to fix what I won’t acknowledge.

I have a feeling that learning curve goes on forever.

11 Comments Post a comment
  1. Yes… the learning curve goes on forever. But that’s a good thing.

    One thing that’s been hard for me about being honest with my endo: If I’m honest, and we work on a problem I have, if I don’t see improvement by the next appointment, I definitely feel like a failure. Like I have no more excuses. It is, like you said, a vicious cycle. Lie and your health may suffer, or be honest and hope like hell you get it right. The important thing is to keep trying, no matter what. Thanks

    05/8/14; 12:01 pm
    • Kris #

      Yes! I agree 100%. If I try REALLY hard and I still “fail” then what can I do? That was my mind set for so long!

      I’m now pregnant, so all that I do will show when my baby boy is born in less than three weeks. BUT I have come to terms that sometimes diabetes is just a bully. No matter how hard I try and how “perfect” I may eat, sometimes it just won’t turn out the way I want. But, knowing I’ve made it this far in pregnancy (something I thought would be IMPOSSIBLE) shows me that I can in fact do a lot more than I imagined!

      05/8/14; 4:56 pm
  2. emily #

    I used to make up logbook numbers for my pediatric endocrinologist. Because I didn’t want to disappoint him about not keeping my numbers down. After reading this I agree its a waste of time, but I also feel like if I was sat down and explained everything about my disease and how I should do things I would probably have done a better job. I think its hard having a chronic illness at such a young age. We probably all did things like you and I have written, just to get by and walk the diabetes walk. Thanks for sharing.

    05/8/14; 5:39 pm
  3. Gary #

    Can’t imagine what it is like having T1D as a child, but being a teacher there are, besides diabetes, huge expectations placed on children and most children will do anything to meet those expectations. , including lying about meeting them.

    Expectations are fine as long as they are realistic.

    I know that’s where many teachers and parents mess up, and I guess where alot of pediatric endos do too

    05/8/14; 7:43 pm
  4. andy #

    Love your blog! My first cde wasn’t diabetic nor was my doctor. After leaving that practice my new cde is a type 1 also. Someone who gets it! Woohoo! Honesty comes from me in everything now because he walks the walk and doesn’t judge. A hcp that is judgemental will never get honesty.

    05/9/14; 7:26 am
    • I’ve never had an endo or CDE who also was type 1, but I’ve had really good luck with compassionate and SMART HCPs, so I feel lucky.

      05/9/14; 10:13 am
  5. June S. #

    This was an excellent post. With regard to teens, my own endocrinologist has told me that it’s much easier for a Kindergartener with Type I diabetes and a pump to achieve BG targets than a teen. She told me that she once had a “model” T1 child who would go anywhere and everywhere to educate other kids and parents about how to use a pump. Once the child became a teen, though, he rarely even checked his blood glucose levels at all. I think it’s part of the teenage rebellious stage, and it can wreak havoc on diabetes control, and start a teen on the road to complications. Teens think they are going to live forever. I wish we could find a way to convince them that they’re not. Type I diabetes is precisely the sort of thing a teen DOESN’T want to be diagnosed with, while he/she is trying to be the same as his/her peers in every way.

    05/9/14; 11:09 am
  6. ria #

    is stretching or minimizing the truth considered lying ? = (

    05/9/14; 3:14 pm
  7. Julie #

    Kerri,

    Great post and great blog!

    Glad you brought up this taboo topic. I think everyone I know with diabetes at some point as lied to their health care team, just no one speaks publicly about it.

    I had a less than positive experience with my peds Endo and actually felt like a bag of crap after each appointment. Even though my HA1C (even with the lying) was always in the 6′s or 7′s. He always made me feel terrible when there were high BG in the book or when I forgot to test once or twice. I dreaded these appointments. He would use the words “bad” or “good” to describe the numbers and like anyone, you associate either a positive or negative feeling with those words. Still to this day I struggle with not feeling “bad” or “good” based on the number and try to focus on the positive decisions I make with my care. My only saving grace as a teen was my dietician. She was kindhearted and spoke to me about my life other than diabetes. Thank goodness for her :)

    Just as you have, I’ve spent many years trying to be truthful to my healthcare team and to myself. Lying hurts you more than anyone else and nothing good comes from it. It took me a long time to realize this. Along the way I basically “fired” a handful of Endo’s who’s outlook on management and patient care didn’t match the way I felt about diabetes care. I have finally found someone that, for the most part, is not going to give me grief and make me feel like a horrible person if I am doing less than a stellar job. And there are times when you are ON IT. You are almost excited about your management and are putting more time and effort in. Then there are those times where you only give the bare minimum because that’s all you have to give at that time. He gets it. It’s been a long road to find that Endo and hopefully our relationship continues to grow like that of a fine wine and get better with age ;)

    Anyway… a little personal rant there about my situation growing up.

    05/11/14; 9:49 am
  8. Martha #

    Diabetes is the perfect vehicle for teen rebellion. So no need for drugs or alcohol, on the plus side. Looking back, of course I lied to my extremely earnest and kind pediatric endocrinologist…it takes some degree of maturity to be honest with a doctor about how I’ve fallen down on the job and it is freeing as an adult to be able to do that and hold my head high, now that I have several decades worth of perspective on the matter.

    05/12/14; 4:03 pm

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