Dr. Mara Gordon and Jessica Slice on Mutual Trust Between Doctors and Patients

It was an absolute delight to spend time with Mara Gordon yesterday, trying to solve medical care (ha!) She is a family physician and NPR medical columnist who has become one of my favorite thinkers about the culture of medicine. We’ve been in conversation for about a year after she interviewed me about Unfit Parent for NPR. Her work on size-inclusive medicine and disability justice overlaps with mine. What follows is a transcript of our conversation though if you read the transcript you miss the earthquake excitement. A full video is above.

I asked Mara to talk because ever since my daughter, K, became profoundly ill in September and accessing medical care for her has been like clawing at a brick wall, I’ve been puzzling at why medicine has such a hard time with certain types of illness (multi-system, psychiatric, pediatric). As Mara and I talked, we considered the impacts of short appointments, psychiatric diagnoses that often prevent additional medical exploration, and the tenuous role of patient (or parent) experts.

Lightly edited for clarity and readability.

Mara: Jessica, I’m so happy to be here in conversation with you. Let me just tell everyone how we connected. About a year ago, Jessica wrote a beautiful book called Unfit Parent, which everybody should read. I got to interview her for NPR, where I work as a medical columnist. Her book transformed so much of my thinking — about parenthood, about disability — and we’ve stayed in touch ever since. Her work continues to inspire me both as a family physician and as a mom. Happy internet friendship anniversary, Jessica.

Jessica: I love the way you write about medicine. I first learned about you because you write about size-inclusive medicine, and so much of the way you write about that incorporates disability justice — this idea that when clinicians discriminate against patients because of their size, what they’re really trying to do is pretend that they have some control over health. That if there’s a distinction between “unhealthy and fat” and “healthy and thin,” a clinician can feel like they have some personal control. And the way you write about that is stunning. There’s a real overlap in the way we both think — so much of being a disabled person and being a clinician is this wrestling with control, this wrestling with what it means to have bodies and trying to figure out how to live with the reality that all of these bodies are tricky and messy and failing eventually.

Mara: Totally. There’s so much to think about regarding the culture of medicine and how it shapes the experiences people have when they seek care. I’m in Philadelphia, practicing in New Jersey in the U.S. healthcare system. Jessica’s in Toronto, so she has a slightly different experience — but she’s American and has had plenty of experience in the U.S. health care system too.

What prompted us to do this Substack Live was to talk about some experiences your family has had recently, Jessica — things you’ve written about in your newsletter. I think that’s probably a good place to start, framing what your family’s experience has been over the past year or so, so we have a shared point of reference.

Jessica: The onset of when our family’s lives changed — and more specifically my oldest child’s life — was September 26th of last year. We’re approaching seven months now. My daughter developed a respiratory virus that escalated very quickly into something that had a behavioral, psychiatric, and motor presentation. It was extremely scary — still pretty scary — but at the beginning it felt like peak crisis.

She ended up getting a diagnosis, but it was a diagnosis we came to despite many visits to hospitals and doctors. A friend of mine — a general surgeon — was the one who first identified it. We were on a text chain, and she started picking up on these symptom trends and encouraged me to look it up. The diagnosis is called PANS-PANDAS, which is a neuropsychiatric condition.

There have been two things happening in parallel for us. One is this absolutely devastating illness that has changed almost everything about how our family operates — figuring out my child’s care, how to help her survive the days, how to help her experience some relief. But then there’s also the part of me that’s still a writer and journalist, observing this happen and watching how hard it has been to get appropriate medical care. How our reports of her experience, our own exposure to this diagnosis, my own research as a mom — how all of that was rejected when we visited doctors, both in the emergency room and with our pediatrician.

I kept thinking: she has this illness that is studied at Stanford and Harvard and Dartmouth. It’s been recognized under its current name for 30 years, and William Osler wrote about it in 1893. I’ve found records going back to the 1660s. It’s a real illness that is studied and highly researched — and yet somehow when we went to seek treatment, we were turned away.

I found myself asking: is this medical culture? Is this the weird intersection of psychiatric presentation with organic cause? Is it that it’s an illness a doctor hasn’t seen? Is it the artificial bifurcation between body and mind in medicine? Is it just that appointments are too short? But the resistance seemed like more than time-related. It seemed like something deeper was happening.

And because I know you care so much about medicine and injustice, Mara, I was really happy you were willing to puzzle through this with me. This illness isn’t your specialty.

Mara: Definitely not. But I do see kids in crisis. So Jessica, will you tell us a little more about PANS?

Jessica: What we understand is that for some people — and it seems to be more often children, though some people in their 20s experience this too — when they get a viral or bacterial infection, that infection impacts the basal ganglia, a part of the brain roughly in the center of the head, right behind the tonsils. Some physicians think it actually travels through the tonsils to the basal ganglia and passes the blood-brain barrier. But regardless, there is basal ganglia involvement — they’ve confirmed this by examining the brains of children who have died from it, and they find Alzheimer’s-type changes.

What that basal ganglia injury does is impact motor control and emotion regulation. So the onset looks like very severe OCD with complete emotional dysregulation, plus loss of motor control in the form of tics or a seizure-type movement called syndenham’s chorea. It’s basically a virus or infection that starts attacking the brain. Some physician-researchers see it as autoimmune, others as autoinflammatory — distinctions in the innate versus acquired immune system that aren’t worth getting too deep into here — but it is some form of the body responding to a pathogen in a way that attacks part of the brain. A physical change related to an illness that has psychiatric manifestations.

Mara: Right. And in medicine we have a number of diseases that fall into this general category — precipitated by an infection, followed by an inflammatory response. In this case, a neuropsychiatric one. And it’s pretty rare, as far as I understand. I’ve been in practice for over a decade and I’ve never cared for a child with this diagnosis — though like many poorly understood illnesses, it may also be underdiagnosed.

Jessica: A Dartmouth population study found it in one in 11,000 kids under a strict definition. But by shifting the definition slightly — including sudden-onset OCD that may be secondary to infection but isn’t quite as severe — some researchers put it closer to one in 200. In that case it’s quite common.

Because kids get sick so regularly and OCD and tics are fairly common in children, until there’s a way to clearly identify which cases are infection-related, it’s hard to know the real rate. One thing I’ve thought about — though I have no power to propose anything to anyone — is that if a child presents with sudden-onset OCD, there should be a diagnostic course of antibiotics. If the OCD has a dramatic resolution in response, that indicates some form of neuroinflammatory origin. We might find out it’s much more frequent if that kind of diagnostic treatment were offered.

Mara: That’s a good segue. The purpose of this conversation isn’t really to go deep on pathophysiology — Jessica is far more expert than I am on that. What we’re interested in unpacking together is how the beast of medicine mobilizes in response to a situation like what happened with your family. I had a mentor in training who called it a cruise ship — medicine is so big that steering it is almost impossible. So tell us a bit about what your family’s experience was like seeking a diagnosis and treatment.

Jessica: We visited the hospital a few times. The first time, we were told it was nothing to worry about. Another time, we were told that because my child has autism, this was just part of her autism. But as her mom, I know what that looks like — and it wasn’t.

I had to fight really hard for a physical exam. What it felt like is that we were immediately sent down a psychiatric pathway, and doctors weren’t even interested in doing a physical exam because she had been labeled a psychiatric patient. We were offered inpatient adult psychiatric admission — for my eight-year-old. And it says on her record that “mom declined admission,” which I did. Then when I brought the PANS diagnosis to our pediatrician, he said: “This is a controversial diagnosis. I think she’s having a psychiatric break and you don’t want to admit it.”

He had this presentation of humility — “this is really scary, it’s outside my expertise” — but his actual practice was disbelief. And at that point I was staying up all night watching Grand Rounds and reading every medical journal article I could find. I can understand things. I’m not a doctor, but I can synthesize information. And I felt like I had this understanding, but the people who needed to provide care were only willing to offer antipsychotics and Ativan. The medicines that would actually help her — anti-inflammatories and antibiotics — were being withheld because the diagnosis was contested.

I just felt like I was running into a wall over and over again. We ended up paying out of pocket for a consultation with a doctor in the U.S. I started talking to other moms, got put in touch with a nurse practitioner who was willing to prescribe outside the usual channels, and obtained azithromycin that way. And it did help. But I had to take myself off the tracks of medicine entirely to get care — when that’s not what I wanted at all.

I remember calling a neurologist’s office at one point and hearing their outgoing message: “If this is a medical emergency, please visit your nearest emergency room.” And I said out loud: “We did that. We did that. We did that. And no one will help.”

Eventually I learned that the Children’s Hospital here in Toronto actually has a center for this condition. But the wait list was long, and when I called a neurologist in the meantime, he said, “That’s a contested illness — I don’t treat it.”

What made it so illogical is that Stanford, Mass General, Dartmouth, Georgetown, and the NIH have all had long-running research programs on this. How are these things existing simultaneously? And I started to talk to other moms who had been through it, and everyone had encountered the same thing — this feeling of having to jump the tracks to get their kids care.

Mara: I want to sit with that for a moment, because it’s just worth acknowledging that your family has been suffering, and that’s been compounded by feeling like you can’t access expertise. Watching your child suffer while feeling turned away is profoundly demoralizing. I also want to say that I’m flattered by the idea of “what would happen if you’d presented to me,” but a mentor of mine once said: if a patient tells you you’re the only doctor who can help them, beware — run screaming in the opposite direction. I try to hold onto that.

I think the myth that there are good doctors and bad doctors is really harmful and inaccurate. Doctors are humans, and all humans are capable of both. Some doctors are more curious about certain things, and other doctors have a harder time with uncertainty. We’re all humans.

There are a couple threads I want to pull out. One is the psychiatric versus medical distinction. As a primary care doctor, I think about this a lot — primary care is sort of the interface between psychiatric and physical medicine, and I find it a genuinely generative space, but also really tricky. Will you say more about what that experience was like, getting shunted down the psychiatric route?

Jessica: I think because the symptoms are psychiatric, it was in some sense the most logical pathway. But what I found so interesting is that the DSM — which as a trained social worker I’ve spent time with — says that any psychiatric diagnosis must happen only after all medical causes have been ruled out. It feels like in practice, that doesn’t always happen.

What we would have discovered, had medical causes been properly ruled out, is that my daughter had a lot of irregularities with her immune system. There were organic things happening. And “organic” is a term that kept getting used in a way that I initially found confusing as a non-doctor — but I think it means “organ in origin,” as in, something physically happening in the body.

Mara: The brain is an organ.

Jessica: Exactly — the brain is an organ. It’s such a false dichotomy. Because as soon as you start asking, “Is it psychiatric or is it organic? Is it medical or psychiatric?” — you’re really asking what is the difference between the brain and the mind. What is a diagnosis of the brain that doesn’t include the mind? Are we talking about souls? About personhood? It starts to feel like a genuinely existential question.

I also think: there are other illnesses that can have psychiatric presentations. Lupus. UTIs in elderly patients. So the protocol of ruling out medical origin is important. But maybe because of time pressure, or because most of the time there isn’t a discovered medical origin, it seems simpler to pursue the psychiatric route.

It also felt — to be frank — like if we were labeled psychiatric in the emergency room, we were off their plate. And that’s a diagnostic bias that can compound over time. The ER is often where preliminary diagnoses occur, and once that train starts rolling, it can be really hard to undo.

Mara: Right. There’s so much human cognitive bias in differential diagnosis — we teach this in medical school. Anchoring bias: if an ER doctor says it’s a psychiatric illness, you’re off to the races, and it takes real deliberate clinical effort to stop and ask, “What haven’t we considered?” I do think the dichotomy between “psychiatric” and “organic” — as if a psychiatric diagnosis cannot be organic — is one that our field is slowly grappling with. There’s so much overlap. If any of my patients gets diagnosed with a chronic illness, diabetes or cancer, I’m immediately thinking about their mental health too, because of course it will affect them.

There’s a narrative I see online that if a doctor suggests a psychiatric diagnosis, it means they’re dismissing your symptoms. And I want to be clear that I don’t see it that way — so much of what I do as a primary care doctor is mental health care. But I think what you experienced — getting shunted down the psychiatric route so that you were, as you described, “off their plate” — is real. And once that cognitive bias train is rolling, it can be genuinely hard to come off those tracks.

Jessica: I think the “psychiatric as dismissal” dynamic happens in large part because it’s used in contexts where no additional medical testing is done. In our case, it was used to take us out of the medical track entirely. So it did function as dismissal.

There’s also the biomarker issue: with psychiatric illness, there are no biomarkers, no quantitative tests. That makes it easier to use as a catch-all. I was told I was anxious for years until I got diagnosed with POTS, because my heart would race due to blood flow issues. The psychiatric label meant I wasn’t getting the necessary medical testing. So it did feel like dismissal because it dismissed further exploration.

Mara: I think you named it yourself earlier — is it just that appointments are too short? I’m reluctant to blame your entire experience on that, but I do think it’s part of it. In my primary care clinic, people get 20 minutes with me. From the first word out of their mouth, I’m thinking: how can I conceptualize this as a discrete issue I can treat with a discrete solution?

We doctors have a really hard time sitting with uncertainty, because it’s so antithetical to the way we’re trained. Medical school assessments are almost entirely multiple choice — one correct answer. And in the context of a corporatized healthcare system that rushes patients in and out, that becomes even more acute.

In psychiatry especially, the way we try to quantify emotional experiences is — I find it so strange. We screen for depression in my clinic, which is recommended by the U.S. Preventative Services Task Force. And the screening tool is: how many times have you felt sad over the last two weeks? I always find it so absurd, trying to superimpose a quantitative framework onto experiences that are genuinely difficult to quantify.

And your pediatrician probably had 20 patients waiting for them. If they felt like they couldn’t offer what was actually needed — and it sounds like quite inaccurately so — the time pressures are real. That’s not an excuse, and the onus is on us doctors to do better. But it’s a system thing. It’s not just an individual doctor.

Jessica: Here’s something I think anyone with a complex health condition — or who parents someone with one — has encountered. As I mentioned, I now know a lot about this. I knew a lot quickly because I was a mom who worried her kid was dying.

And there’s this delicate dance as a mom or a patient where you can’t say everything you know, because then the doctor will like you even less and listen to you even less. I kept thinking: what if one of those doctors had just said, “Can you tell me what you’ve learned?” What I would have sent was the Grand Rounds recordings I’d been watching, journal articles from JAMA. Real things. I wasn’t deep in Reddit. I was reading and watching legitimate medical sources that probably would have been quite compelling to a physician.

But it felt like knowing things discredited me. I don’t know what to do as a patient. My choices are to learn a lot — which I’m apparently not supposed to do, because I’m not supposed to play “Dr. Google” — or not learn, in which case how do I save my kid? And how can there be a transparent conversation with a doctor? If our pediatrician had said “can you share what you’ve learned?” and I’d sent just a couple of links, I think he would have seen the almost exact overlap between the symptom description and what my daughter was experiencing — and would have been able to follow the standard treatment protocol. Instead, when I started to share what I was learning, he shut down.

Mara: Tell me more about that conversation.

Jessica: We were on the phone, and he said: “I’d really be cautious, because you’re not a physician and these things can be quite complicated.”

Mara: Which is true, but — you’re highly educated, you’re a trained researcher, and you care deeply about your child.

Jessica: Right. And I think this comes up a lot, and it’s not only about parents who are capable of synthesizing complex information. There is no one who learns better than a desperate parent. How can parents — how can patients — have more freedom to share what we’ve learned, and doctors have more space to hear it and be open to new ideas, especially when there’s a gap in expertise that desperation has partially closed?

Mara: That’s such a good question, and I wish I had a clean answer. In my pediatric training, the mantra was: listen to the parents. Parents know when something is wrong with their child. That’s not to say there’s always an identifiable rare illness — but something is worthy of further investigation and empathy when a parent voices a concern, and when an adult patient voices a concern about their own body.

I’ll say this too: I think I’ve matured as a clinician over time in a way that makes me much more comfortable saying when I don’t know something. And I think that’s partly a direct response to the training culture, which says express certainty at all costs — we even tell medical students to just guess if they’re unsure, but to sound certain. Many doctors have internalized the idea that that’s what patients want from them.

But I’ve come to understand that competence is not the same thing as certainty. And that competence is not the same thing as having a neat prescription I can click a button and send to the pharmacy. I often didn’t give my patients enough credit for understanding that. There’s this idea that if we don’t offer neat solutions, we’re somehow failing them — that they’ll give us a bad review online. I really don’t think that’s the case. People are often quite smart about their own bodies, and can understand that there’s not always a tidy biomedical solution.

Mara: I also want to point out something about the treatment for PANS specifically. The treatments that appear effective are relatively low-harm: antibiotics we’d prescribe for strep throat, anti-inflammatories like ibuprofen. I prescribe both to children all the time. And yet the psychiatric medications your daughter was actually offered carry considerably more potential risk. It’s striking that the obsession with diagnostic certainty can overwhelm common sense to the point where a physician won’t try a course of antibiotics — something they’d prescribe without hesitation for an ear infection.

Now that your daughter is getting more appropriate care, will you say more about how that came about?

Jessica: The way we were able to get care at the Children’s Hospital here in Toronto was through my reporting. As part of writing my article, I got to know a researcher at Stanford, and she wrote a letter advocating for us.

My daughter needs IVIG, which is more costly and carries more risk. She had one dose and it was profoundly effective — for about three weeks. In order to continue receiving it, though, we had to have her teachers write letters attesting that this wasn’t her baseline. My explanation that this wasn’t her baseline wasn’t sufficient. We needed outside confirmation.

We got what we needed, so it was worth it. But that shouldn’t be the path.

I interviewed one doctor as part of my reporting who said something that has stayed with me. She made the decision, after experiencing illness in her own family, to believe all of her patients — no matter what. And if she made an error, she wanted it to be because she believed them too much.

Mara: I like that a lot.

Jessica: I thought it was profound. What a totally different system if patients weren’t seen as noncompliant, but were just fully trusted in their reporting. And back when you were talking about being willing to say “I don’t know” — I’ve found doctors are actually more willing to say that than I would have expected. But there’s one more step that seems so much harder, and that’s curiosity. Not just “I don’t know,” but “I’d like to know. Can you teach me something?” I have not experienced a doctor saying to me: “What can you teach me?” And I think it could be genuinely useful, because parents who are desperate learn a lot.

Mara: It’s such a wild thing to unpack — that “I’m going to believe my patients” would be a radical statement. I think part of what drives the mistrust is training culture. We’re really taught to keep patients at arm’s length. It’s often considered unprofessional to get “too close.” And I think there’s also something more subtle happening, which connects to what you raised at the start of our conversation.

If doctors think of patients as fundamentally different from themselves, there’s a way of maintaining a sense of control over one’s own health and mortality. I don’t think it’s conscious — most doctors would push back on this — but I think it’s part of the culture. If we think of patients as different from us, we cling to the idea that if we take care of ourselves properly, we won’t succumb to what they have. And facing a child like your daughter in my office, and not being able to do anything to help — it rattles you to your core. I can only imagine what it’s like as the parent.

So there’s this subtle psychological defense mechanism. And I think it can tip into: if patients’ disease is, in some subconscious way, their fault — then we’re protected from the despair of seeing suffering we cannot fix.

Mara: One more thing I want to add before we take questions. In 2026, we’d be remiss not to talk about how internet culture is changing the way people access medical care. It can be a profound force for good — you have access to every medical journal, every Grand Rounds recording. And you’re a journalist, a trained social worker. You can read those sources and assess for yourself.

But the flip side: I think it’s no surprise that with a condition like PANS, the options tend to be either a specialist at an elite children’s hospital, or an internet practitioner who takes cash. I see that with my patients who have stigmatized and poorly understood conditions — it’s either the person with ten million publications in the New England Journal, or someone off the mainstream path.

And I think many doctors feel nervous when patients are getting care from sources they can’t easily verify. There’s a fine line between what I do in mainstream primary care and being considered a fringe practitioner. I don’t think that’s an excuse for what your family experienced — but I think it may be a factor.

Jessica: I think there are certain illnesses where that’s especially true. I interviewed one physician — Dr. Angela Tang, an internal medicine doctor whose child developed PANDAS — and she said that if her own kid hadn’t had it, she would have dismissed it. She called PANS part of a specific category of diagnoses that doctors dread: EDS, POTS, chronic pelvic pain, functional neurological disorder, gastroparesis, chronic Lyme. She called them “TikTok illnesses” — the ones that make doctors roll their eyes.

In fact, I was doing an intake last week and the doctor asked about my health history. I said I have Ehlers-Danlos. She asked: “TikTok Ehlers-Danlos or geneticist Ehlers-Danlos?” I have a geneticist diagnosis.

Mara: That’s not a kind way to phrase it.

Jessica: No. And I don’t think proximity to grifters discredits the illness or even necessarily the patient. I think it discredits the lack of available care. People are responding to desperation. I didn’t fully understand that desperation until it happened to my kid.

Mara: Do you think the ruthlessness of medical training influences this? The hours, the “show no weakness” culture of residency, the way trainees are expected to ignore their own mental and physical health needs — does that shape how doctors relate to patients?

Jessica: I think it must. That kind of training doesn’t create a spirit of empathy.

Mara: I do think our training is profoundly ableist, and your work has helped me start to conceptualize that. I think the culture combines an obsession with quantitative biomedical diagnosis and treatment, a trained distance between doctor and patient, and a system that has been so thoroughly corporatized that people are rushed in and out in a dehumanizing way. And all of that together can create a culture where, very subtly, disease feels like your fault — as though if you care for yourself properly, you can avoid the things we’re all subject to.

My patients will sometimes come in and ask: “Am I dying?” And in my mind, I always think: we all are, eventually. I try not to say it flippantly. But acknowledging that is really important. Even the way the question is phrased implies that you might not be.

I do think corporate healthcare adds to this in ways that may be underappreciated — it’s profoundly affecting my ability, as a doctor, to develop real relationships with patients.

On diagnostic prevalence by sex:

Jessica: The confirmed rate is actually pretty even between sexes. What we don’t know well is how it breaks down. But what I think is significant is that it’s most often moms who are pursuing the medical care — and moms can be considered unreliable. One person I interviewed had a child with a confirmed PANS diagnosis from Dartmouth, and she brought her to a neurologist who needed to sign off on a procedure. She left the appointment to find that the neurologist had documented: her child didn’t have PANS. The diagnosis was “mom’s anxiety.” So yes, there’s a gender element to how these cases get handled.

On whether the profession is getting better:

Mara: I’m an optimist at heart, and I think the arc does bend toward justice. The medical field is more diverse than it has ever been — women now make up the majority of medical trainees, and there is far more racial and gender identity diversity than there was a generation ago. But alongside that has come a corporatization that my grandfather — who was a primary care doctor, who made house calls — wouldn’t have recognized. He had his doctor’s bag. I have my computer. I think we have more equity in some ways, and less humanity in others. It’s a genuinely hard question.

Jessica: I don’t know. I think I’ve been around the medical system long enough — as a patient, as a parent, as a journalist covering it — to be uncertain. I’m not sure.

Mara: Jessica, I love your work. It’s been so moving to me, both personally and professionally. I’m so glad your daughter is getting better and getting the care she needs. That’s the most important thing.

Jessica: Thank you all for joining. And if people have ideas for other things we should explore together, let’s do another one.

Jessica’s reported piece on PANS is forthcoming. Mara writes NPR’s Real Talk with a Doc column and practices family medicine in New Jersey.