What stayed with me in this conversation is the sense that mistrust in medicine does not begin only when people feel dismissed. Sometimes it begins earlier, in the moment a person’s suffering is sorted too quickly into a category that stops curiosity instead of deepening it.
That is what gives this discussion its weight. Once a psychiatric frame is applied prematurely, the problem is no longer only stigma. It is momentum. The chart starts telling a story, the next clinician inherits it, and what might have remained an open diagnostic question begins to harden into a pathway. At that point, the patient or parent is not only fighting illness. They are also fighting the interpretive gravity of a system that has already decided what kind of case this is.
What makes the piece especially strong is that it does not reduce this to bad people or bad intentions. It shows something more painful and more common: how time pressure, cognitive bias, fear of uncertainty, and the false split between mind and body can combine into a form of abandonment that still wears the language of care. In that sense, the deepest question here may not be only how to rebuild trust. It may be how to preserve clinical openness long enough for trust to remain possible at all.
I'm a PCP, and I'm so interested in how we handle the misunderstood/emerging diagnoses like PNAS, EDS, POTS, MCAS, long COVID. I barely learned about these in my training, and what I did learn was heavily colored by the "eye rolling" Jessica describes. I've learned some about these things through my own reading, but it is so challenging, to turn studies into practical steps to take (especially as funding is decimated). It's also so hard to help my patients get specialty care when I see the gatekeeping and I know what other medical people will think when I include these as suspected diagnoses in my charts. Things that are complex and multisystem fall into this gray zone, it's challenging to know how to advise patients even if we continue to believe them and remain committing to help relieve their suffering.
I totally agree! I do think listening, believing that our patients are suffering, and staying open-minded goes a long way, even if we can’t offer “cures” <3
Such an interesting conversation, and a heart-breaking situation for Jessica. It reminds me of a friend who sees the same PCP as I do. We're both highly educated scientists. She is younger than I am and a few years ago tried really hard to get our PCP to prescribe her HRT. She brought the doctor recently published articles from medical journals, and had another specialist doctor write a letter. Our PCP wouldn't budge, and wasn't interested in looking over the resources, or doing any research on her own. Eventually my friend paid out of pocket for the treatment. A year later, and HRT is now being regularly prescribed again.
Honestly, I think one of the big issues with medical training is that it doesn't require any original research. Every PhD requires original research, and the lack of that requirement means medical students don't have the experience of evaluating uncertaintly and searching for answers.
That’s so interesting! Many medical schools do require research but honestly I sometimes feel the requirement just contributes to the huge volume of low quality pseudo research that clogs up mediocre medical journals!!!
I do agree that critical appraisal of scientific literature is a critical skill to be a clinician. And staying up to date on scientific literature.
I don’t think those are skills that are learned by doing research, necessarily — I quickly realized a research career wasn’t for me, but I’ve really improved my ability to read and assess scientific literature by my work as a journalist and by teaching medical students.
I agree with you. But I think that doing research provides people with the experience of not knowing the right answer, and that uncertainty might counter this idea that doctors should always know the right answer, or at least pretend to.
This is brilliant. It flows so seamlessly thru most of the Big Questions that doctors and patients face. And the experiences that are common to patients in the U.S. medical system. Especially the bit about believing in patients
I call myself a “three strikes" patient. I am female. I am fat. And I live with late-diagnosed, chronic Lyme disease. Clearly I can't be trusted. And I have learned how to twist like a pretzel when presenting so that I can make my doctor feel safe enough to give me at least some of what I need.
I don't think about this a lot anymore. But when I do it makes me furious. Because it is exactly what women trapped in domestic violence do.
I finally caught up on this and have so many thoughts! Jessica, I am so sorry you went through this with your child. PANS sounds absolutely terrifying. I didn't know that it can be fatal. So scary! Also, I didn't know that you are a fellow social worker! <3
Mara, I will admit that I was a bit dismayed to learn that doctors projecting certainty is a feature, not a bug. This explains so many interactions I've had with doctors over the years. Teaching this in medical training stands in stark contrast to what I was taught in social work school: to avoid jumping to conclusions or assume that we know more than the patient, who is the expert in their own experience. At the same time, I think all providers have become exasperated with patients endlessly diagnosing themselves based on social media posts. I have spent countless hours in my career educating people about what disorders really are, versus what social media influencers say they are, and disabusing them of the notion that they suffer from disorders that they absolutely do not have. I recently wrote a two-part series about what trauma is, for example, and have another one dropping tomorrow about who gets to label themselves as "traumatized." That being said, Jessica, I think it's absurd that a doctor asked you, while you were presumably in your wheelchair, whether you have Tik-Tok Ehlers-Danlos. Ugh.
Okay, one last thought: I worked in integrated primary care for years and received SO many referrals from doctors who couldn't figure out what was physically wrong with a patient, so dismissed them as a headcase instead. I also noticed a pattern of doctors becoming angry at patients who were difficult to diagnose. Instead of humbly admitting that they don't know everything, doctors often became irate at the patient and accused them of fabricating symptoms. This was especially true of patients with chronic fatigue and fibromyalgia. When I assessed people and communicated to their doctors that I thought their symptoms were not psychiatric, but "organic," they were generally not interested in hearing it. I saw a lot of patients fall through the cracks this way.
Thank you, Diana, for your empathy. And your insights from receiving the "trouble patients" is so revealing (and depressing). Thank you so much for watching and I'm grateful for your work!
Thanks for these thoughtful replies! So interesting you worked in integrated primary care … we just lost our therapist and we are having a hard time hiring for it.
I left the job in 2020 and the system shut down the program after that. 😢 The doctors in the clinic were nice enough to me, but they also treated me like an outsider, e.g. I wasn't invited to the provider meetings. When I asked the clinic manager about it, she said, "It's more that you're housed here than part of the team." I was hoping for more collaboration, but instead I felt more like a babysitter for the patients with difficult personalities who were causing problems for the doctors. I saw the potential to do so much more with it, and I hope other clinics are doing it better.
Thanks for such a generative conversation!
What stayed with me in this conversation is the sense that mistrust in medicine does not begin only when people feel dismissed. Sometimes it begins earlier, in the moment a person’s suffering is sorted too quickly into a category that stops curiosity instead of deepening it.
That is what gives this discussion its weight. Once a psychiatric frame is applied prematurely, the problem is no longer only stigma. It is momentum. The chart starts telling a story, the next clinician inherits it, and what might have remained an open diagnostic question begins to harden into a pathway. At that point, the patient or parent is not only fighting illness. They are also fighting the interpretive gravity of a system that has already decided what kind of case this is.
What makes the piece especially strong is that it does not reduce this to bad people or bad intentions. It shows something more painful and more common: how time pressure, cognitive bias, fear of uncertainty, and the false split between mind and body can combine into a form of abandonment that still wears the language of care. In that sense, the deepest question here may not be only how to rebuild trust. It may be how to preserve clinical openness long enough for trust to remain possible at all.
Beautifully said!
Thank you, Mara. I found the piece deeply clarifying, and painful in the right way.
This. Exactly this.
I'm a PCP, and I'm so interested in how we handle the misunderstood/emerging diagnoses like PNAS, EDS, POTS, MCAS, long COVID. I barely learned about these in my training, and what I did learn was heavily colored by the "eye rolling" Jessica describes. I've learned some about these things through my own reading, but it is so challenging, to turn studies into practical steps to take (especially as funding is decimated). It's also so hard to help my patients get specialty care when I see the gatekeeping and I know what other medical people will think when I include these as suspected diagnoses in my charts. Things that are complex and multisystem fall into this gray zone, it's challenging to know how to advise patients even if we continue to believe them and remain committing to help relieve their suffering.
I totally agree! I do think listening, believing that our patients are suffering, and staying open-minded goes a long way, even if we can’t offer “cures” <3
Sounds like your patients are lucky to have you
Such an interesting conversation, and a heart-breaking situation for Jessica. It reminds me of a friend who sees the same PCP as I do. We're both highly educated scientists. She is younger than I am and a few years ago tried really hard to get our PCP to prescribe her HRT. She brought the doctor recently published articles from medical journals, and had another specialist doctor write a letter. Our PCP wouldn't budge, and wasn't interested in looking over the resources, or doing any research on her own. Eventually my friend paid out of pocket for the treatment. A year later, and HRT is now being regularly prescribed again.
Honestly, I think one of the big issues with medical training is that it doesn't require any original research. Every PhD requires original research, and the lack of that requirement means medical students don't have the experience of evaluating uncertaintly and searching for answers.
That’s so interesting! Many medical schools do require research but honestly I sometimes feel the requirement just contributes to the huge volume of low quality pseudo research that clogs up mediocre medical journals!!!
I do agree that critical appraisal of scientific literature is a critical skill to be a clinician. And staying up to date on scientific literature.
I don’t think those are skills that are learned by doing research, necessarily — I quickly realized a research career wasn’t for me, but I’ve really improved my ability to read and assess scientific literature by my work as a journalist and by teaching medical students.
I agree with you. But I think that doing research provides people with the experience of not knowing the right answer, and that uncertainty might counter this idea that doctors should always know the right answer, or at least pretend to.
❤️
This is brilliant. It flows so seamlessly thru most of the Big Questions that doctors and patients face. And the experiences that are common to patients in the U.S. medical system. Especially the bit about believing in patients
I call myself a “three strikes" patient. I am female. I am fat. And I live with late-diagnosed, chronic Lyme disease. Clearly I can't be trusted. And I have learned how to twist like a pretzel when presenting so that I can make my doctor feel safe enough to give me at least some of what I need.
I don't think about this a lot anymore. But when I do it makes me furious. Because it is exactly what women trapped in domestic violence do.
Thanks for sharing all this. ❤️
I finally caught up on this and have so many thoughts! Jessica, I am so sorry you went through this with your child. PANS sounds absolutely terrifying. I didn't know that it can be fatal. So scary! Also, I didn't know that you are a fellow social worker! <3
Mara, I will admit that I was a bit dismayed to learn that doctors projecting certainty is a feature, not a bug. This explains so many interactions I've had with doctors over the years. Teaching this in medical training stands in stark contrast to what I was taught in social work school: to avoid jumping to conclusions or assume that we know more than the patient, who is the expert in their own experience. At the same time, I think all providers have become exasperated with patients endlessly diagnosing themselves based on social media posts. I have spent countless hours in my career educating people about what disorders really are, versus what social media influencers say they are, and disabusing them of the notion that they suffer from disorders that they absolutely do not have. I recently wrote a two-part series about what trauma is, for example, and have another one dropping tomorrow about who gets to label themselves as "traumatized." That being said, Jessica, I think it's absurd that a doctor asked you, while you were presumably in your wheelchair, whether you have Tik-Tok Ehlers-Danlos. Ugh.
Okay, one last thought: I worked in integrated primary care for years and received SO many referrals from doctors who couldn't figure out what was physically wrong with a patient, so dismissed them as a headcase instead. I also noticed a pattern of doctors becoming angry at patients who were difficult to diagnose. Instead of humbly admitting that they don't know everything, doctors often became irate at the patient and accused them of fabricating symptoms. This was especially true of patients with chronic fatigue and fibromyalgia. When I assessed people and communicated to their doctors that I thought their symptoms were not psychiatric, but "organic," they were generally not interested in hearing it. I saw a lot of patients fall through the cracks this way.
Thank you, Diana, for your empathy. And your insights from receiving the "trouble patients" is so revealing (and depressing). Thank you so much for watching and I'm grateful for your work!
Thanks for these thoughtful replies! So interesting you worked in integrated primary care … we just lost our therapist and we are having a hard time hiring for it.
I left the job in 2020 and the system shut down the program after that. 😢 The doctors in the clinic were nice enough to me, but they also treated me like an outsider, e.g. I wasn't invited to the provider meetings. When I asked the clinic manager about it, she said, "It's more that you're housed here than part of the team." I was hoping for more collaboration, but instead I felt more like a babysitter for the patients with difficult personalities who were causing problems for the doctors. I saw the potential to do so much more with it, and I hope other clinics are doing it better.
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