Yesterday, I checked in at the Joslin Clinic in Boston and saw this screen on the wall:
“Are those boards new?” I asked the woman who was checking me in for my appointment.
“Which ones?” she said, acknowledging the on-going construction in the waiting room.
“The ones that look like they’re from the airport. The arrival and departure boards for the doctors.”
“Those are new. It helps keep people from asking when their doctor will be calling them in,” she said, scanning my insurance card.
In my twenty-eight years as a patient at the Joslin Clinic, I’ve never seen anything that noted how on time or late my doctor was running. I remain a patient at Joslin because they have been taking good care of me and my diabetes since I was seven years old, but it is admittedly an all-day affair to make my appointments. Driving in from Rhode Island takes about two hours, all told. (Driving home, depending on how late I leave the clinic, could be a three hour endurance event, thanks to New England traffic on 95.) Most of the time, I wait a significantly long time to see my doctor, but she doesn’t make me feel rushed when I’m in the office with her. Usually, once we’re in her office, the wait seems justifiable because it’s clear she cares about her patients and doesn’t simply shuffle them out the door once the *ding* goes off.
My endo appointment yesterday was at noon, but the paperwork I received before the appointment asked me to show up at 11.30 am, so I structured my morning to pull into the Pilgrim Parking Lot at 11.15 am and be in the waiting room just before 11.30. (I don’t make a habit of being late because there was one time I was fifteen minutes late due to traffic and they cancelled my appointment, so I’m paranoid and now perpetually early.)
My endo, according to the arrival/departure board was ON TIME. Which is good, because I was also ON TIME.
After my pre-appointment work up, I waited in the waiting room to be called for my appointment. As scheduled by Joslin, I had an endo visit at noon and an eye dilation at 1 pm, which the woman who scheduled my appointment on the phone said would be more than enough time between appointments. At 12.15, I still hadn’t been called in to see my endo. The board said ON TIME. At 12.25, I was starting to get a little antsy and had my logbook and list of questions in hand so that I could get going as soon as my endo was ready. When I was called in at 12.30, I called the board a liar because it still said ON TIME but things were not ON TIME and now I was going to be RUSHED in order to make my second appointment.
I have pockets of being upset about diabetes, but on the whole, I’m usually pretty okay. But waiting for doctors and appointments and being on hold with insurance companies and having to have stupid fucking tests for c-peptide to confirm whether or not I have type 1 diabetes so that my insurance company will cover an insulin pump … this sort of thing makes me bananas. Diabetes management on a day-to-day basis takes up significant brain space, but it’s necessary so I do it. Sitting in a waiting room for an appointment that I was ON TIME for but the doctors are not turns me into a ball of rage.
I’m glad I have an established history of reasonable communication with my endocrinologist, or she would have thought I was unhinged. I was so angry by the time I was called into the appointment at 12.30 because I knew that I only had 28 minutes to hash out six months worth of diabetes-related concerns (after she did the required hearing of my heart, checking of my thyroid, testing my feet for nerve damage, etc) and then run downstairs to the eye clinic for my dilation.
To make matters more frustrating, the c-peptide test that I had done was not in her file. It was missing. “I will find this,” my endo said, shuffling through the pile of papers on her desk. “I will email the team now and have them follow up with your lab this afternoon.”
“This is making me crazy, and I feel bad complaining about it to you, but this is not cool. The board says ON TIME and yet we’re just now in the room, and instead of being able to talk about what needs to be talked about, you are being forced to chase down paperwork for a lab I’ve already done to prove I have type 1 diabetes for a stupid insurance company. And I have thirteen minutes before my eye dilation appointment downstairs.”
The look on her face was one of understanding. She nodded, and I wondered what kind of boxes she was required to check throughout the day. How many patients was she required to see? How often are the patients ON TIME, or prepared with log books and questions? How many times is my endo put through a discussion about what insurance companies do or don’t cover, when that is not her job? My journey with diabetes is forced, but hers was chosen, and there are moments when I want to thank her for making this her life’s work. And then I want to throw a rock at the arrival/departure board and shatter it into a million pieces because that day, it was just another, “Oh, what a good idea and this will really help patients!” but instead it’s another savvy-looking tool in place to keep patients sitting still and not asking questions. “Yes, your doctor is ON TIME. Look at the board.” What is the point of this board if it’s inaccurate? Just to look patient-centric? How about being human-centric and requiring that patients and doctors alike be on time and prepared for their appointments? And what are my options if the doctor is running terribly behind? As a friend commented on Facebook: “So what are the ramifications if it says ‘WICKED LATE’ next to one doctor’s name? Do you get to choose, as the patient, to leave and not be charged?”
We burned through my appointment in record time – my weight is down, A1C is fine, plan is to continue to be tuned in to diabetes – and then I was shuffled off to my eye appointment. The eye appointments always take a long time (dilation) but that appointment was uneventful as well, with my macular edema holding steady where it was back in May (I’ll take “not worse” and “staying stable” as a good sign).
And then I was off home.
Later in the evening, the phone rang. It was my endocrinologist, who was calling to say that the c-peptide test had been found and the results were in. “This won’t be a surprise to you, but your c-peptide was undetectable.”
“So you’re saying I have type 1 diabetes?”
“Yes. Just like we thought.”
“Well I’ll need some time to adjust to this new diagnosis, but thank you for letting me know.”
She laughed, and we exchanged other pleasantries before getting off the phone. Birdy was sitting at the kitchen table, staring at me while I was talking with my doctor.
“Mom, you have diabetes?”
“Mmm hmmm,” I said absently, handing her a napkin while she ate her dinner.
“But mom, didn’t you already know?”
“I already knew. But now it’s official.”
She looked at me with a mouthful of food. “Well that doesn’t make any sense and anyway, you knew the whole time!”
I respect my endo. And the Joslin Clinic. But holy hell, yesterday’s healthcare excursion was an exercise in frustration and to boot, now I have diabetes officially, after all this time of