I was thinking about how wayfinding applies to the clinic setting, and how navigating without a map comes in handy with “mystery” illnesses and uncategorizable problems that patients seek treatment for. I don’t have a clinical practice at this point but I reached out to a patient I worked with previously, whose experience demonstrates the need for wayfinding — and she was gracious enough to do this interview. (Expect more interviews from more gracious people in future newsletters!)
Let’s call her Frances. If this were a movie she’d like to have Frances McDormand play her, so please imagine Frances McDormand as the narrator here.
Me: So do you mind describing what happened, for people who weren’t there?
Frances: Sure. I don’t know how much of a rabbit hole you want to go down.
Me: As much as you’re willing. It’s good for the students.
Frances: Okay then. So I don’t know if you remember this part, but about three years before I started working with you, I had the first iteration of what I’d call a constellation of symptoms: episodes where I felt very weak but not dizzy, nauseated without vomiting. I felt very hollow. It was difficult to eat but without frequent food the feeling got worse. If I was having an episode, I couldn’t drive. It had an impact on my sleep because I’d be up in the middle of the night with that feeling.
I started with the assumption that it was anxiety, that I was having physical symptoms of anxiety, because it was an acutely stressful time in my life, and because at the time there wasn't an obvious "physical" cause. I did my best to address the anxiety, and got a lot more diligent as far as my diet and my sleep hygiene. My symptoms did quiet down, but the problem never really went away. It became something I managed, something that sort of lurked in the background.
So when it came back way more intensely, three years later, at a time when I wasn’t particularly stressed, I thought: this has to be a physical problem.
I had a primary care provider who was responsive once I got her attention, once I was able to convey that this was really, really bad. She was like, okay, we’re going to examine every organ system to find out what’s causing this. Which we did. By then I was also getting acupuncture from you.
Before I get into the story, I want to say at no point did I feel like I got shabby or substandard care from my providers. The cardiologist really tried, the gastroenterologist and the endocrinologists really tried, everybody I saw basically turned their pockets inside out to try to help me.
Me: It seems like you still sort of fell through the cracks in the healthcare system, though. Just not in the same way a lot of WCA’s other patients do.
Frances: I feel pretty fluent in navigating medical systems, I have high health literacy, and I'm perfectly comfortable advocating for myself. And I still fell through a really big crack! But not because they treated me badly or unsympathetically, or because somebody made a mistake. They just weren’t able to put a name on what was happening, or fix it.
So after my PCP said, let’s figure this out, we tried the pulmonology approach and the cardiology approach. All those tests yielded no answers. But when I did my labs for the endocrinologist, they found a pancreastatin score that was ten times what it’s supposed to be. So that endocrinologist thought the source of my problem must be a neuroendocrine tumor, not malignant but something that needed to be removed.
Me: Yes, I remember that. It was the first thing that seemed like an answer.
Frances: It launched round after round of testing, to try to locate the tumor so they could take it out. But they couldn’t find it. Endocrinologist #1 sent me to a neuroendocrine surgeon, and then a gastroenterologist also. The worst part was getting scoped. But they couldn’t find it, couldn’t find it. And because they couldn’t find it I was stuck.
Finally Endocrinologist #1 came up with the idea of prescribing a neuroendocrine drug as a sort of challenge — they said, you’re going to take this drug and then we’ll see what happens. I read up on the drug and its side effects and my response was, the fuck I will. And when I got to the appointment with the person who was supposed to prescribe it (Endocrinologist #2) she told me candidly that she thought it was a terrible idea.
She explained that there’s only one lab on the whole planet that can test properly for pancreastatin — and we can’t use that lab. So we haven't even been measuring pancreastatin in the first place.
Me: And wasn’t the lab in Ireland or something? I feel like I remember that weirdly specific detail.
Frances: Something like that, it was definitely another country! So this pancreastatin number that launched all this testing, it turns out it means nothing. Plus, even if we sent my blood to that one lab in Ireland or wherever and we got a true high score, it still doesn’t mean there’s a tumor. Apparently a tumor will drive up the score but an elevated score doesn’t prove there’s a tumor. She said this part of medicine is a little bit like the Wild West. And then she went and got her boss, Endocrinologist #3––the head of the department––and she said: don’t go down that road.
At that point I was OVER IT. I’m like, I’m just going to try to manage this with my acupuncturist.
Me: At that point we’d been working together for awhile. Tell me what acupuncture was like for you.
Frances: It was never dramatic. There was never a point where you treated me and then I got up and felt significantly different. Getting better was much more incremental than that.
Me: And I remember there was one time, a low point, when you looked at me and you said: I feel like I can’t do this much longer. I’m circling the drain.
Frances: In addition to the physical symptoms and the exhaustion of all the medical testing, there was a kind of secondary mental health thing, a kind of dread that just kept getting worse. Like, I need help but I don’t know where the help will come from. It was very demoralizing.
I glimpsed that place where people just give up, and that was so shocking for me. I couldn't have imagined what it was like to feel so desperate.
Not being able to be in the world the way I wanted to, because I felt so awful physically, it was so alienating. And then nobody could come up with a diagnosis — it felt like being lost on the moors in the fog. What was that thing you said about the clouds?
Me: Oh right. I confessed that I didn’t have a diagnosis for you either, but unlike your other providers, I didn’t need a diagnosis in order to treat you. I didn’t need to name the problem in order to work on it. I was mostly doing variations on Miriam Lee’s Great Ten with you, over and over. (This is an example of what we mean when we talk about praxis vs. theory at POCA Tech.)
For me, working with your mystery problem was like working with any other chronic condition. Often when people come in with some frustrating chronic illness or chronic pain, I feel like I’m looking at a sky that’s completely covered with dense clouds. It’s thick, it’s hanging over us, and nothing is moving. And I’m just sort of poking that cloud bank with the needles, willing it to break up, little by little. And eventually it does. Little gaps and edges appear and the problem doesn’t look so impenetrable anymore. Eventually there’s a glimpse of blue sky and it’s like, okay! We’re making progress!
Frances: The metaphor that helped me the most was when you talked about pearls on a string. The idea that we were aiming for little increments of change that could add up over time. Were the symptoms less intense, was the duration of the episodes shorter, were the bad periods more spread out — was I having more good days, by any measure? You said treating this thing was like stringing pearls, just adding one good moment at a time, one after the other. Let’s just keep this process going until something tips, you said. And eventually it did tip.
Me: Right. This is maybe too much inside baseball, but I feel like a lot of acupuncturists get hung up on our version of diagnosis. Acupuncture isn’t like Chinese herbs, you don’t need a TCM differential diagnosis in order to move forward with a course of treatment. You don’t even need to worry about getting it wrong, because there is no wrong. As my friend Whitney says, acupuncture is amazingly flexible and forgiving. You can trust it.
Frances: Not having a biomedical diagnosis means I’m in this weird place, and I’m just happy there’s somebody to keep me company in that place. If lack of a diagnosis had stopped you, I would be on my own.
Me: We call that accompaniment. (Best job ever.)
Frances: For me, acupuncture is this thing that I can do, where I don’t know what’s going on and maybe my acupuncturist doesn’t either — but it’s fine because I know this will be good for me. And that’s enough.
I’m not giving up my Western medicine because sometimes it really works! I’m happy to live in the age of antibiotics! However, there are a number of things it can’t do. I have to admit that in the past I wasn’t as compassionate as I could be with people who have problems that are hard to diagnose, I didn’t get it. My perspective now is different.
Incidentally, I saw Endocrinologist #1 a couple of days ago for my yearly check-in. He "tested my pancreastatin" and now it’s at the low end of normal. But I don’t know if that means anything because I don’t know what it meant before, when it was ten times what it was supposed to be. We don’t know what we were measuring.
So I just go back to, Am I good today? I’m good today.