Meghan O’Rourke on a medical system not built for chronic illness — and the ‘invisible kingdom’ that could spur change

When her life was upturned by an accumulating array of confounding health problems, Meghan O’Rourke turned, like so many writers before her, to metaphor.

Her body wracked with fatigue was a mound of sand. Her descent into illness was Hemingway’s description of going broke: gradually, then suddenly. The chronically ill patient dejected after fruitless interactions with doctors was nearly invisible, and solitary. She saw the body, within the paradigm of Western medicine, as a car. “Its parts need upkeep, piece by piece,” she wrote in her acclaimed 2022 book, “The Invisible Kingdom.” In 15-minute pit stops, care is doled out, and the car sent to a different mechanic if the issue isn’t as simple as a tire change.

But in her decades-long search for answers about what was happening in her own body, O’Rourke, a journalist, poet, and teacher, found the limitations of such an approach. In her efforts to get diagnosis and treatment of what she learned was POTS, hypermobile Ehlers-Danlos syndrome, autoimmune thyroiditis, and more, she saw the failures of the health care system in caring for people with chronic conditions.

O’Rourke sat down with STAT’s Angus Chen at the STAT Summit last week in Boston to discuss some of the major issues in chronic care, and what has changed or not since she first became ill. The following are highlights from that interview, edited for clarity and brevity.

You have this long journey through diagnosis. What are some of the things that really stand out to you?

A couple weeks after graduating, I started experiencing a roller coaster of mysterious symptoms, including fatigue, night sweats, vertigo, joint pain, rashes, hives. It’s a kind of laundry list that impacted all different parts of my body and systems in my body. And what happened, the low point, was I did not receive [a diagnosis]. Not because any of my doctors were malicious; I had amazing doctors, some of whom are still friends of mine. But because we’re in a health care system that the building block is a 15-minute appointment. It’s hard to unify a constellation of symptoms, and especially if they don’t map neatly onto a diagnosis that’s easy to make. And in my case, there were some very unusual things about my presentation that just made it very, very hard to both test for what was wrong and hard to diagnose me.

The low point was not just the physical suffering that I underwent, but I think one thing that’s important to know, especially for patients with chronic illness, is how freighted and important the encounters with medical care are … as a validation for what’s going on.

One of the things that really struck me in the book was when you write about this erasure of who you were. I want to talk about that a little bit, and whether or how that changed once you did receive a diagnosis.

I’m a journalist. I like to explore things and find names for them and understand them in a larger social or historical context, which is what the book is. One of the most severe symptoms I had was what we call fatigue. The kind of fatigue I was experiencing really was pathological. How it was impacting my life I found really, really challenging. The image I use in the book — and I invite everyone to imagine this for a second — is a feeling that my body was made of sand and I had to hold it all together. I actually feel like I got this image from a really terrible Spider-Man movie where the guy turns into sand.

There’s what the sociologist Kathy Charmaz has called the loss of self that accompanies any time that our health is impacted: We have to dismantle an old self and build a new one. But the argument I make in my book is that it’s impossible to do that if what you’re meeting is non-recognition of your symptoms from the very system that is supposed to help you with them. You get stuck in a special kind of purgatory that makes it really hard to build that new identity and to find a way of navigating your new life.

I noticed that physicians often focused on the symptom they were most familiar with and that they most knew how to treat. Rarely did anyone say to me, “What bothers you the most? What is impacting your life and your sense of identity the most?” We need, in chronic illness care, a little bit more of the model that we have in palliative care. Not that it is palliative care, but that palliative care brings to bear a patient-centered approach in which the patient’s desires and wishes are foremost.

This was a really big theme in the book: how your interactions with physicians reflected how poorly equipped our medical system is to deal with chronic illness. How does this model of the patient and the physician fail patients with chronic illness?

We find that doctors feel poorly equipped to treat chronic illness. A large percentage of doctors say, “We just do not feel we were trained to do this.” The other thing is that it requires crossing specialists and having people communicate. I didn’t even know that you should just get all your doctors at one hospital. I had a patchwork. So I think many patients find themselves kind of caught in the middle.

There’s a structural issue — a very fragmented, siloed medical system. Then there’s this deeper question of meaning. For this reason, we have many patients turning to alternative medicine, because that is a model, as I say in the book, that treats the person theoretically, in a metaphorical way, kind of like a garden. As a whole.

As a society, are we changing our model of these illnesses, partially because of long Covid? Beginning to think maybe autoimmunity is not something intrinsic — something wrong with an individual’s body — but there’s an extrinsic force acting on it.

One of the things that I argue in the book and I think is true is that maybe America particularly has a resistance to chronic illness. There’s something about chronic illness itself, the illness that doesn’t resolve, that we don’t have adequate cultural narratives for. And this lines up with the fact that physicians and hospitals don’t feel trained, but we tend to tell these stories of dramatic overcoming.

None of us, including people living with illness, have great stories for how to think about the illness that, in the case of an autoimmune disease, may start and stop, relapsing and remitting. As a consequence, many of the people I interviewed, as you’re alluding to, tell themselves a story about why they had an autoimmune disease in the first place that involved it being their individual fault somehow.

Susan Sontag wrote a really important book called “Illness as Metaphor,” in which she traced our culture’s history of telling ourselves that cancer was the result of stress. And she argued that this was a really fallacious argument, but that we were making it for reasons that kind of let us off the hook somehow. I argue the same thing about these conditions. Even if you look at the politicization of long Covid, there’s a way in which we don’t want to look the problem fully in the eye — including people living with the conditions — because it can go against everything that we’ve been taught to think.

It’s important instead to look at the sociopolitical factors that may be contributing to what is really a dramatic rise of autoimmune disease in Western countries like the United States. As one researcher put it, it’s an epidemic.

Do you see pharma playing a role in really investing more deeply into what tools we have that can actually help people achieve a better quality of life?

Absolutely. Things have changed even since I started researching the book 10 years ago, but as one researcher at Harvard put it to me, in the field of autoimmune disease we’re a decade at least behind cancer.

If we were to recognize and invest in these conditions, which really do constitute a huge burden economically and a huge burden on people’s lives, we would be able to have much better diagnostics, which would take away some of the measurement problem. Better pharmaceuticals. And then a more holistic understanding of what is going wrong in ways that aren’t just suppressing the action of the immune system attacking the self, but actually kind of intervening from the ground up, which we really need.

Recently I think we’ve been seeing a growing movement for disability rights. Do you take comfort from that kind of advocacy?

Yes, I do. I would say the title, “The Invisible Kingdom” really is meant to invoke this idea that alone people may feel invisible, but really there’s so many of us and if we collectively are able to raise our voices and medicine hears us, change can come. Interestingly, I don’t use the word “disability” in my book, but I’m writing a piece right now that’s about this exact rise of disability rights and why it’s so important.

STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.