The Toll of “Appointment Fatigue”

I’m over it, but it’s not over. For years, I’ve resisted medical appointments, having utterly lost hope that physicians can do anything to help me. A lot of it stems from how terrible my experience was in getting diagnosed with fibromyalgia: it took a year, the doctor accused me of holding back information (I didn’t), the doctor prescribed medication for her understanding of the condition itself rather than me as an individual with unique symptoms, and then she pressured me to take that medication that didn’t address my worst symptoms; rather, it made them even worse.

But now, a decade later, with increasingly debilitating dizziness and fatigue, plus tummy issues that prevent me from leaving the house, I have resigned myself to getting professional help.

It’s been a frustrating process. Last year, my primary care physician dropped my insurance, but just kidding, it was all a mistake, which they never bothered to tell me until six months later after I went ahead and switched insurance. So, six months of delaying my care because I thought I didn’t have access. I’ve since moved on from that provider anyway. Strike two was wasting more time with a misdiagnosis, and I was out of patience to wait for strike three.

But getting in to another provider as a “new patient” did mean more delays.

I spent that delay getting said misdiagnosis treated. Well, actually, I went to the treatment to confirm the misdiagnosis and get an idea for the next step. Off to another specialist I went, realizing they couldn’t help me, either. Something else I did while waiting for my new primary care provider appointment was self-diagnose perimenopause and then pay out-of-pocket to a telehealth provider that was thrilled to send me all the expensive drugs I wanted.

After all this, I finally got in with my new primary care provider, and the real fun began. I’ve now got a neurologist, a gastroenterology provider, and a gynecologist. I’ve had blood work done and some follow-ups, but more is to come. Including a brain MRI with contrast and a colonoscopy. And more blood work.

Getting better is making me miserable.

First, there’s the scheduling process. It’s phone calls and being on hold, sometimes with blaring and scratchy hold music that’s torture on my audio sensitivity. Sometimes it’s waiting on a call back, and so having to be tethered to my phone so I don’t miss it, and most times I end up answering calls from telemarketers and spammers, which I usually avoid. Yes, there’s an online portal, but they’ve just adopted a new one and nothing’s working. The phone calls are extra long and fraught with frustration because they’re battling this wonderful new technology on their end as well.

And while I’m on the topic of schedules, yes, this level of medical care is like a part-time job with extra suffering and a negative paycheck. It wrecks a schedule like having a gaggle of children who play soccer.

Then I’ve got to get to the appointment. It’s skipping breakfast and loading up on anti-diarrhea medication so I can make the drive, but I panic the whole drive anyway. When I get there, I have to wait. I’m either standing in line, which is hard because I’m extra dizzy since I haven’t eaten anything. Or, I am sitting in a chair that is very painful on my arthritic back and my arthritic tailbone that’s already sore from the drive. Then comes the pleasure of being weighed, yet again, when I’m well aware of my weight. In the room, there is more waiting, more sitting in uncomfortable chairs. No, I’m not going to lie on the table. That feels undignified to me, and I have little dignity left at this point.

The appointment is rushed. They’ve only got so much time. They might want to focus on only one symptom when I’ve got countless. I’ve been cut off, chastised. There are the “lifestyle” questions that feel like an interrogation: What’s my tobacco use? How much do I drink? Do I use recreational drugs? Even if I live like a Girl Scout, I still feel like I’m in trouble! They get even more personal at, say, the gynecologist. And I try to provide information, try to self-advocate, but I keep getting dizzier and looming in the back of my mind is that someone is about to call me obese. Again. Well, why don’t you just help me feel better so I can exercise and put down my comfort pizza?

Next comes the heap of questions, instead of answers, and then … the dreaded tests to come.

My gastro appointment was last Monday. I left with a colonoscopy scheduled (and a sack of supplies for the 24-hour poo party ahead of it). For the next few weeks, I will be dreading being drugged, being seen naked and prodded by strangers, and then coming out of it–and I’ll use this word again–without my dignity. It was no help when the nurse practitioner said to me, “You should hear some of the things people say when they’re coming out of the anesthesia!” Great, now I’m truly terrified. Besides that, I also got a whole kit for collecting “samples,” which is going to make me vomit. I get to store the grossest possible thing in my fridge and freezer, and then when I drop it off, I can go ahead and do that thing where I’m stabbed with a needle. Again.

I have to keep a food journal. It sounds innocuous, and I suppose it is, but it’s yet another thing piled on to all the things, and it feels like a further violation of my privacy.

That might be what hit me the hardest, last Monday: grief over this cataclysmic loss of my privacy. I’m being watched. I’m being studied. I’m being scrutinized. I’m being documented and uploaded. I’m being literally poked and prodded. I’m being deprived of my right mind!

The other thing about the food journal is it gives me no break from having to think about all this. If I eat a banana, I’ve got to write that down, think about how sick I am, think about the tests and appointments coming up. It’s inescapable.

I sank into such a miserable depression after that long-awaited, much-hope-pinned-upon gastro appointment last week. Oh hell yeah, I chased it with a lot of pizza. Between bouts of gluttony and tears, my partner asked, “Did she say what she thinks it is?”

No.

This is just me. This is just a snapshot of my personal examples. There are so many of us who have to endure this. And I’m not going to say some have it better and some have it worse, because it’s not a damn competition. If you’re going through this, you’re going through it, and it sucks.

Follow-up article: 5 Hacks for Surviving Appointment Fatigue