StellariaGraminea
Senior Member (Voting Rights)
Article by @NeurologistMom on X:
"
As a senior neurologist and full time caregiver to my severely ill teen daughter, I have discovered a hard truth: many chronic complex illness patients feel safer confiding in AI than in physicians.
Here is why and what that says about medicine.
I will not name my daughter’s condition, because what I am describing applies to many chronic complex patients.
These are conditions that often involve multiple organ systems, fluctuate over time, and follow a non linear course. Symptoms can be severe and disabling even when standard tests are normal, biomarkers are absent, or mechanisms are only partially understood. Disability is real, even when medicine lacks the tools to measure it well.
What often goes unspoken is that when illness cannot be measured, the patient themselves becomes the evidence. And when that evidence is doubted, harm follows.
For years, we have been living through this. Not only in the U.S. We traveled across countries, searching for answers. The pattern was almost always the same, across institutions, cultures, and healthcare systems.
Different systems, different specialties, the same underlying response to uncertainty.
In the best-case scenario, if we were not rejected outright, the process looked like this:
Sometimes this shift happens later. Sometimes it starts at the very first visit.
This pattern is not about a lack of care. It appears when clinicians reach the limits of what they can explain. Medicine is built to find answers and move forward. When symptoms remain unclear, contradictory, or persist despite testing and treatment, not knowing becomes uncomfortable. Over time, that discomfort grows. Instead of saying “we do not know,” the problem is reinterpreted in a way that feels more manageable. What cannot be explained biologically is labeled psychological, not because the evidence points there, but because it restores a sense of order.
For patients, this moment is not neutral. It marks a shift from being a source of information to being treated as the problem itself.
My husband is a neuroradiologist. I am a neurologist. Even with our professional background, when we brought relevant literature or carefully reasoned hypotheses for discussion, we were often dismissed. On one occasion, we shared peer-reviewed studies suggesting that latent viruses can reactivate in similar cases and produce symptoms very much like those our daughter was experiencing at the time. The response was eye-rolling, followed by, “That’s not how we do things here.”
What happens to families without medical training?
What happens to patients who cannot articulate their symptoms in the “right” language?
What happens to children, who cannot advocate for themselves and rely entirely on adults to be believed?
In these situations, loss of credibility becomes as disabling as the illness itself.
So where did we feel heard?
With AI.
We turned to AI tools like Grok. The responses were detailed, non-defensive, and grounded in the literature. Suddenly, our questions were treated as valid hypotheses rather than as threats.
We shared the same detailed history, the same patterns, the same unanswered questions. And for the first time, we were not judged. We were not blamed. We were not told we were imagining things.
We asked for literature. We asked about similar patient experiences. We asked to understand.
The questions themselves were not treated as a threat.
We could iterate. Refine timelines. Compare hypotheses. Ask follow-up questions without fear of being labeled difficult or anxious.
Nothing was taken away from us for asking more.
AI did not get defensive. It did not shut the conversation down. It did not imply our child did not want to get better.
It did not punish curiosity.
Over time, those conversations became better. More precise. More useful. And yes, we learned a great deal without guilt or shame.
This matters, because shame is one of the most powerful silencers in medicine.
AI helped us turn chaos into structure. It helped us organize information in ways that clinicians could, in principle, use.
It restored our ability to think clearly in a situation designed to overwhelm.
People say AI lacks empathy.
Do you know what truly lacks empathy?
Being ignored.Being blamed.Being gaslit.
Empathy is not tone. Empathy is how systems respond to vulnerability and uncertainty. For many chronic complex patients, the deepest harm is not the absence of answers, but the erosion of trust in their own reality.
Once that trust is broken, every future interaction starts from a position of defense.
I see countless similar stories from the chronic complex disease community here on X. That is why I created this account in the first place. When conventional approaches failed to provide answers, we needed to find others living through the same uncertainty.
We needed connection, shared experience, and a way to compare notes when medicine had little to offer. Over time, patients, caregivers, and scientists began sharing observations, patterns, and hard-won practical knowledge, often identifying triggers and treatment sensitivities long before they appear in textbooks.
This is not crowd-sourced medicine. It is collective sense-making in the absence of guidance.
Most healthy people, and even many patients with well-defined diseases, do not understand this.
When illness fits a known pathway, medicine works remarkably well. When it does not, patients can become invisible. And invisibility allows harm to persist without accountability.
We are not asking for miracles. We already know there may be no cure yet.
What we are asking for is acknowledgment. To not be dismissed. To not be blamed for our suffering.
To have uncertainty named honestly rather than weaponized. To be partners in thinking, not obstacles to efficiency.
AI is not a replacement for physicians. It has limits. It can be wrong. It cannot examine a patient or assume clinical responsibility. But the fact that so many chronic complex patients feel safer asking hard questions to a machine than to a human clinician should make us pause.
It's not a triumph of technology. It's a warning, and a call to rebuild trust before more patients turn away
If you criticize AI in healthcare for lacking empathy, think twice.
When it comes to chronic complex patients, being heard matters more than being perfect.
"
Link:
"
As a senior neurologist and full time caregiver to my severely ill teen daughter, I have discovered a hard truth: many chronic complex illness patients feel safer confiding in AI than in physicians.
Here is why and what that says about medicine.
I will not name my daughter’s condition, because what I am describing applies to many chronic complex patients.
These are conditions that often involve multiple organ systems, fluctuate over time, and follow a non linear course. Symptoms can be severe and disabling even when standard tests are normal, biomarkers are absent, or mechanisms are only partially understood. Disability is real, even when medicine lacks the tools to measure it well.
What often goes unspoken is that when illness cannot be measured, the patient themselves becomes the evidence. And when that evidence is doubted, harm follows.
For years, we have been living through this. Not only in the U.S. We traveled across countries, searching for answers. The pattern was almost always the same, across institutions, cultures, and healthcare systems.
Different systems, different specialties, the same underlying response to uncertainty.
In the best-case scenario, if we were not rejected outright, the process looked like this:
- The clinician sees a very sick child and genuinely tries to understand what is happening.There is curiosity at first, and often real compassion.
- They order every test they know how to order.Time is limited, but testing is something medicine is structurally equipped to do.
- The results come back abnormal in many different ways at once, beyond their framework (in some cases, they come back normal, as often happens in chronic complex diseases where medicine does not yet have the tools to measure everything that is wrong).Multisystem abnormalities without a unifying explanation are deeply uncomfortable for clinicians trained to converge quickly on a diagnosis.
- Treatments are tried. Most fail. Some cause severe, “unexpected” side effects.Patients with complex disease are often physiologically fragile, yet this vulnerability is poorly accounted for in standard treatment algorithms.
- Frustration builds and enthusiasm fades.Follow-up visits become shorter. Language becomes less precise. The focus subtly shifts away from problem-solving.
- The problem is reframed as psychological. The patient is blamed. The family is blamed. Gaslighting begins.Uncertainty is no longer named as uncertainty. It is displaced onto the patient.
Sometimes this shift happens later. Sometimes it starts at the very first visit.
This pattern is not about a lack of care. It appears when clinicians reach the limits of what they can explain. Medicine is built to find answers and move forward. When symptoms remain unclear, contradictory, or persist despite testing and treatment, not knowing becomes uncomfortable. Over time, that discomfort grows. Instead of saying “we do not know,” the problem is reinterpreted in a way that feels more manageable. What cannot be explained biologically is labeled psychological, not because the evidence points there, but because it restores a sense of order.
For patients, this moment is not neutral. It marks a shift from being a source of information to being treated as the problem itself.
My husband is a neuroradiologist. I am a neurologist. Even with our professional background, when we brought relevant literature or carefully reasoned hypotheses for discussion, we were often dismissed. On one occasion, we shared peer-reviewed studies suggesting that latent viruses can reactivate in similar cases and produce symptoms very much like those our daughter was experiencing at the time. The response was eye-rolling, followed by, “That’s not how we do things here.”
What happens to families without medical training?
What happens to patients who cannot articulate their symptoms in the “right” language?
What happens to children, who cannot advocate for themselves and rely entirely on adults to be believed?
In these situations, loss of credibility becomes as disabling as the illness itself.
So where did we feel heard?
With AI.
We turned to AI tools like Grok. The responses were detailed, non-defensive, and grounded in the literature. Suddenly, our questions were treated as valid hypotheses rather than as threats.
We shared the same detailed history, the same patterns, the same unanswered questions. And for the first time, we were not judged. We were not blamed. We were not told we were imagining things.
We asked for literature. We asked about similar patient experiences. We asked to understand.
The questions themselves were not treated as a threat.
We could iterate. Refine timelines. Compare hypotheses. Ask follow-up questions without fear of being labeled difficult or anxious.
Nothing was taken away from us for asking more.
AI did not get defensive. It did not shut the conversation down. It did not imply our child did not want to get better.
It did not punish curiosity.
Over time, those conversations became better. More precise. More useful. And yes, we learned a great deal without guilt or shame.
This matters, because shame is one of the most powerful silencers in medicine.
AI helped us turn chaos into structure. It helped us organize information in ways that clinicians could, in principle, use.
It restored our ability to think clearly in a situation designed to overwhelm.
People say AI lacks empathy.
Do you know what truly lacks empathy?
Being ignored.Being blamed.Being gaslit.
Empathy is not tone. Empathy is how systems respond to vulnerability and uncertainty. For many chronic complex patients, the deepest harm is not the absence of answers, but the erosion of trust in their own reality.
Once that trust is broken, every future interaction starts from a position of defense.
I see countless similar stories from the chronic complex disease community here on X. That is why I created this account in the first place. When conventional approaches failed to provide answers, we needed to find others living through the same uncertainty.
We needed connection, shared experience, and a way to compare notes when medicine had little to offer. Over time, patients, caregivers, and scientists began sharing observations, patterns, and hard-won practical knowledge, often identifying triggers and treatment sensitivities long before they appear in textbooks.
This is not crowd-sourced medicine. It is collective sense-making in the absence of guidance.
Most healthy people, and even many patients with well-defined diseases, do not understand this.
When illness fits a known pathway, medicine works remarkably well. When it does not, patients can become invisible. And invisibility allows harm to persist without accountability.
We are not asking for miracles. We already know there may be no cure yet.
What we are asking for is acknowledgment. To not be dismissed. To not be blamed for our suffering.
To have uncertainty named honestly rather than weaponized. To be partners in thinking, not obstacles to efficiency.
AI is not a replacement for physicians. It has limits. It can be wrong. It cannot examine a patient or assume clinical responsibility. But the fact that so many chronic complex patients feel safer asking hard questions to a machine than to a human clinician should make us pause.
It's not a triumph of technology. It's a warning, and a call to rebuild trust before more patients turn away
If you criticize AI in healthcare for lacking empathy, think twice.
When it comes to chronic complex patients, being heard matters more than being perfect.
"
Link:
