A Culture of Honesty
By Kerri Sparling
Twitter Summary: [email protected] Kerri Sparling describes her journey to embracing honesty w/ her #diabetes endo
I have found it challenging, at times, to tell the truth to my endocrinologist.
“Exercise? Yes. I exercise. Nine times a day, I exercise.”
“I have no idea why I was high last Thursday. Or this morning, for that matter.”
“Counting carbs? Yep, I’m all over it.”
Interested in more than just my lab work, my endocrinologist asks me thoughtful questions about my family, my relationship with my husband, and life outside of the confines of my A1c result. So why, as an adult, have I had issues being honest with my endo about the diabetes problems I need real help solving, particularly in moments where I could have just ‘fessed up and saved my endo the effort of trying to find “a solution"?
In broader terms, what makes patients lie? And what makes them tell the truth?
My own journey to honesty
Over the last few years, I’ve made a concerted effort to cut through my own personal noise and embrace a culture of honesty. Where I am succeeding is easier to share than the parts where I struggle, but I’ve come to realize that my endo can’t help me unless I give her good information to work with.
Diagnosed at the age of seven, I’ve lived almost three decades with diabetes, and my life goal has evolved into this hope of living to be old and healthy. I realized this meant I needed to own as much of the process as possible, starting with being honest with myself. I know where my diabetes strengths are: I eat well, I exercise regularly, and I am not afraid to check my blood sugar regardless of what it might be. But I also have to take my weaknesses into account: I have trouble remembering to bolus before meals, I don’t make myself count carbs instead of “just winging it,” and I’ll let a high blood sugar ride without correction for much longer than I should. Sometimes my out-of-range numbers are the product of actively distancing myself from the responsibility of diabetes. The insulin:carb ratios were probably fine, but I chose not to use them – I took a S.W.A.G (scientific, wild-a$$ guess) bolus instead.
Finding enough confidence in myself to admit my shortcomings to my doctor, who I aim to impress with my efforts, was a tall order. For me, it took finding an endocrinologist I trusted with the truth, including the parts of the truth that weren’t so pretty. I know the best doctor for me is one who cares about my emotional response to diabetes, as well as my physical response. It took some trial-and-error, but eventually I found an endo who I felt didn’t judge, but listened and helped me find reasonable solutions to my problems with “reasonable” defined as something I would actually follow through on. Instead of a blanket response of “Do everything. Try harder,” my endo helps me build off of small successes in pursuit of better outcomes.
What makes other patients hide the truth?
Lorraine Sisto, mom to a preteen son with type 1 diabetes, says that faith in her medical team’s knowledge motivates her to be honest with their health care providers (HCPs). “When a medical professional is asking questions only because those are the ones on the checklist they use to conduct an appointment and are non-responsive to answers that should open dialogue, well, that's just a waste of everybody's time, and candor is inherently discouraged.”
Martin Wood, who was diagnosed with type 1 diabetes at the age of two, points out that feelings of “judgment and guilt” can deter honest conversations: “Life happens, people travel, get busy, schedules and routines get interrupted, and the best intentions turn into ‘things that I need to do.’ Understanding and acknowledgement by both the HCP and the patient when things are great, and when things could be better, will yield much better results than judgment and guilt.”
Kate Cornell, who was diagnosed with type 2 diabetes almost ten years ago, brought up the issue of stigma. “Stigma plays a huge role in diabetes, even within the medical community. That one thing can cause people to be less than honest with their doctor. Who wants to admit to their doctor that they occasionally splurge on a treat when they’ve just been told their A1c isn’t where it should be, even though that splurge may have little to do with the average? It’s better to be honest about how/what you’re eating and work with your doctor. Hopefully, that doctor will tell you not to worry about the occasional splurge and relieve you of any guilt you’re feeling!”
So what would improve communication between patients and their healthcare professionals?
Howard Look, parent of a young teen with type 1 diabetes, highlights the importance of honesty on both sides. “First is honesty and transparency. It's when the HCP says not only, ‘Here are the questions I'm going to ask,’ but also says, ‘Here's why it's important for me to ask them.’ It's when the HCP creates teachable moments and realizes that their patient wants to be empowered. And it's when HCPs don't just spend a few minutes in the hallways looking at averages every three months, but actually engage regularly, providing ongoing encouragement, support, and ‘teachable moments.’”
Kate agrees, and also points out the need for education. “In my opinion, the best way to improve doctor/patient communication is through better educated patients. A patient who goes to an appointment armed with knowledge is more apt to have meaningful conversations with their doctor than someone who just sits there and takes whatever they’re told as gospel.”
Trust is an important component in the patient/HCP relationship. “When providers can communicate a relationship of trust, when they can help a patient understand that the patient is trusted and that the patient may trust the provider, this can lead to improved communication,” says Sean Oser, a practicing doctor who also has type 1 diabetes. “The most important element of this is listening, which has only more recently become a skill taught explicitly in medical training.”
“The fact is, both the patient and the HCP are experts about the same thing, just in different ways,” says Martin. “An HCP is trusted to know the clinical, scientific, evidence-based side of life with diabetes. The patient should be trusted to know the day-to-day idiosyncrasies of life with THEIR diabetes. Both parties should try to come to the table to share their knowledge and learn from each other. Diabetes is often unpredictable, and every person requires a different combination to unlock success with the disease. When life with a chronic condition like diabetes can be approached with data, and evidence, and a willingness to consider how that information makes the patient feel and embrace the patient's perspective, the opportunities to live well with diabetes become much more plentiful.”
Conclusion: embracing a culture of honesty
Embracing a culture of honesty with my endo has been challenging at times, 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, but it actually enabled my doctor and me to address the things I needed help with, instead of pretending that everything was fine. As a patient, I don’t want to disappoint my doctor. It took a long time to realize that the lies didn’t help improve my health. 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.