Healthcare Hamster Wheel.
For the last few years, doctor’s appointments have felt like an exercise in “checking the boxes.” Yeah, I called and made an appointment with my endocrinologist. Yeah, I had my A1C drawn and the result was either given to me that day or a week later by way of calling the clinic. Sure, I get weighed and we download my Dexcom receiver and my pump settings and my meter. Yep, let’s look at the blood sugar trends.
It’s impersonal. An odd contrast to how intimate and personal type 1 diabetes is. And a challenge to be motivated to make the effort to visit my endo when it feels like an exercise in checking boxes, kind of for both of us. Nothing happens. I don’t want anything dramatic to happen in terms of my health, but the cycle of going to the endo every four months or so feels like I’m a chronic disease hamster wheel.
I don’t know if it’s the frustration of the healthcare system or frustrations with the relentless monotony of diabetes, but I drag myself to the endo’s office, even now. Usually, I schedule my OB/GYN appointments and my endo visits for the same day (making it one full day of doctor’s appointments in Boston instead of two), but the only appointment I actively care about is the OB/GYN.
The experiences are completely different. My OB/GYN is in a relatively small office and I’ve never waited more than 15 minutes to be seen by the doctor or nurse. The nurse takes my weight and blood pressure and we run through the information on chart, checking the baby’s heartbeat and talking about what’s happened since I last saw them, and what to expect for my next visit. My OB comes in next and we may or may not do an ultrasound (depending on what week in the pregnancy I’m at). Of course these visits are more interesting, right? Pregnancy has a set of milestones that are reached quickly, and the whole process is complete in a set number of weeks. It’s kind of unfair to compare OB visits to endo visits. But during the visit with the nurse and then with the OB, they are looking at me. They are making eye contact with me. It seems like an insignificant detail, but it has the most significant impact. In these visits, I feel like a human being, receiving care for the whole of me.
The warmest, most humanizing interaction at the endo’s office should not be the one where the woman I held the bathroom door open for thanked me and told me to have a happy Easter.
At the Joslin Clinic, I’m asked to arrive 20 minutes early for my appointment and I do, only I’m rarely seen on time. (Last week, I had to go through the “Do you have insurance?” song and dance, despite the fact that I’ve been at the clinic at least three times this year alone and they’ve properly billed my insurance company. Yet somehow my insurance information was missing and we spent ten minutes re-entering it. Waste of the receptionist’s time. And mine.)
My last appointment was at 11.40 am. I was in the waiting room at 11.20 and wasn’t called in for labs until 12.19. I didn’t see the doctor until 12.35. And as much as I respect my endo for all of her expertise and the care that she takes of her patients, I feel exactly like a cog in a machine during those visits. Few moments of actual discussion. I spent several minutes last visit staring at the ceiling while she reviewed notes.
“Have you had recent weight gain? Fatigue? Have you been waking up to urinate in the middle of the night?”
I leaned in. “I’m pregnant. Yes, to all three. Hi.”
Boxes are clicked on a computer screen instead of an actual discussion taking place, and that kills me because she’s a better doctor than that. I received an A1C value that was the lowest I’ve had in my entire life, and yet it felt like another box checked instead of even the briefest of high five moments. Shouldn’t victories be celebrated? Shouldn’t interactions be warm? This past visit, lab work I had drawn during the previous visit wasn’t in my file, frustrating us both. The whole botched system makes it difficult for my endo and I to even have an effective relationship. I feel like she’s forced to work within the expectations that the healthcare system has placed on her, and I try to picture what her day must look like, with patient after patient being shuttled into her room, the demands on her time borderline bananas.
But then I remember that I don’t have to care about all the other patients. My doctor does. The perspective is useful, but I’m the one patient I care most about. Especially these days, since more than just my one body depends on my good health. And lately, my experiences at Joslin are very disappointing. I’m spoiled rotten to be a patient at one of the best diabetes clinics in the world, aren’t I? Longwood medical center care is worth the two hour drive from my home in Rhode Island, isn’t it? I’m healthier because of those doctors, right?
I’m not sure anymore. My health outcomes are a product of the access I have, the work I put in, and the expertise of my medical team. Not one or the other. I feel like I stick it out with Joslin in anticipation of the complications that may come, not as a method of preventing them. I want a diabetes team that sees me as a whole patient, not just a pancreas or a set of eyeballs that need screening every few months.
I will see this pregnancy through at Joslin pregnancy clinic because it worked well the last time, and I want the best for my baby. But I’m already researching local endocrinologist offices for after the baby is born, in effort to feel like a human patient interacting with a human doctor, in a system that recognizes people over paperwork. I’m done with HCP visits feeling more frustrating than fruitful. The time to take back my personal healthcare system is now.