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Posts tagged ‘HCP’

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.

HCPs and the DOC.

My type 1 diabetes is managed on a day-to-day basis by me.  I do my blood sugar checks, I make insulin decisions that correlate with the food I’m eating or the exercise I’m doing.  I have decided to make an insulin pump, a glucose meter, and a continuous glucose monitor part of my diabetes technology arsenal.

My endocrinologist helps manage my diabetes from a distance, but her input is important in the decision-making process I fumble through every day.  Her recommendations, education, and advice color my choices in debating things like Symlin, having children, clinical trials, etc.  She prescribes the drugs and devices I need/want/should have.  My endocrinologist went to medical school and, in any given week, sees dozens of patients living with diabetes (all types).  She’s (sorry for going full Rhode Island’er on you here) wicked smart.  And she helps put her more global perspective on diabetes in play with my myopic view of this disease, giving me a slate of smart options to think about.

Last night’s #dsma chat was a tough one because it seemed to inadvertently set up healthcare professionals as the “bad guys” and people with diabetes as the “wicked smart” ones.

Whoa, what?  I’d like to assume (and I think correctly so) that the question was more poorly phrased than poorly intentioned.  The discussion should have been about gaps between HCP and PWD communication and about building better HCP/patient relationships, not pitting one side against the other.  But, like it or not, it did open up a heated discussion with Tweets and emails and texts flying.  Paraphrased examples:

“They doesn’t listen to me.” 
“They dismiss the things that I say.”
” They judge me.”
“They don’t care about me.”
“I know more about diabetes than they do.”

Funny thing is, I’ve heard doctors and patients ALIKE say these same phrases.

I have had my share of excellent doctors in my life.  Compassionate, smart, reasonable healthcare professionals who have helped me maintain good health.  Ones who have encouraged my patient empowerment and who have celebrated with me the health I’ve achieved and have maintained.  I’ve also had my share of crummy doctors – apathetic, arrogant, uneducated healthcare professionals who didn’t do anything to move the needle on my well-being (except to potentially push it back).  It’s frustrating as fuck to be under the care of a medical professional who doesn’t seem to care, or who make you question the depth of their diabetes knowledge.

And I’ve been an excellent patient a lot of the time.  I’ve been on time for my appointments and armed with the data my doctor needs to help me make decisions.  I’ve had lists of questions and expectations, and my current medication list handy, and my goals outlined.  I’ve also been a crummy patient plenty of times, one who fuddles through the creation a logbook in the waiting room, with a chip on my shoulder already about the A1C result I know won’t be in-range, frustrated by the fact that my insurance company only covers therapies I don’t like, hating on diabetes and the fact that it makes me sit in more doctor’s office’s than I’d like, and arrogantly viewing my perspectives and needs on diabetes as the only one that’s “right” in that moment.

People are people, doctors and patients alike.  And, like all people, there are good days and bad days and good people and bad people and all the in-between people and moments not carefully structured in this sentence but you know what I mean.

The doctor/patient relationship is a delicate one, and isn’t easily housed by 140 characters, or within the confines of one disease state.  What seems to be missing, from my admittedly oscillating perspective, is respect for all parties on all sides.  I need to be more respectful of my doctor’s time, education, and opinion, and they need to be respectful of the exact same things for me.  One doctor doesn’t make or break my perspectives on how healthcare professionals conduct themselves, just as one patient doesn’t speak for us all.  I am the expert on MY own diabetes care, but there is no way I can claim to be the expert (or even remotely knowledgeable) on all things diabetes.  I have made many mistakes along the way, both in how I manage my diabetes and how I interact with my medical team, but I have to allow myself the chance to learn from those mistakes.  Same goes for my doctor.

This is life with diabetes.  My healthcare team AND I work together on my health.  There’s both an “I” and a “team” in “my diabetes,” and that’s the way I like it.

Sort-Of Guest Post: What Do You Wish Health Care Professionals Knew?

[Hey guys.  This post was not written by me, but was instead written on my behalf. It’s more streamlined and professional, and I didn’t want to toss it out there without some kind of explanation or positioning.  Take a look, read through, and please do participate if you’re inclined.  Also, please share this post if you’d like to help highlight this effort.  It’s a very cool study aiming to take a look at how HCPs can learn from communities like the DOC, and I’m looking forward to seeing the results.)  

A researcher in a medical school in Quebec City, Canada (who is type 1 herself) is doing a study about how health care professionals might learn from online communities of people living with conditions like diabetes.

I have been collaborating with her on this study since November 2012. Other people in the DOC are involved, too. I encourage you to participate in the study and to spread the invitation to be a part of this.

This study is open to anyone who has personal experience with diabetes. You may have type 1, type 2, LADA, gestational diabetes, or another type. You might have diabetes yourself or you might be a family member or friend of someone with diabetes.

Tell us what you wish that health care professionals (doctors, nurses, dietitians, physiotherapists, counselors, you name it) understood better about diabetes.

If you want to participate, sometime in the next two weeks, put up a blog post or post a video, and then post a link to it here: click this link for the study.  Tell us what you wish health care professionals knew!

After the two weeks are over, we will ask you to vote to help us prioritize which ones we should show to health care professionals first.

If you have questions about the study, contact Dr. Holly Witteman, PhD, the lead researcher on the study, or Dr. Selma Chipenda-Dansokho, PhD, the research professional running the study.

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