This is nothing new. Modern medicine was a branding before it finally got therapeutics in the 1930s. After the Flexner report, attitude was woven into their training, perhaps to deflect the fact that they were working based on their own imperiousness rather than science.
There was some pushback in the late 60s through the 70s and early 80s from the women’s and Patients’ Rights movements, but this was also the time when medicine was moving from a public good to a moneymaking venture.
It didn’t last, and as corporations and now private equity takeovers, it’s a free-for-all against patients, especially women, and especially of color.
It seems so frustrating the fact that medical gaslighting leads to care avoidance in the future. I feel for many people in my life who have gone into places seeking help and care, only to be treated with refusal towards their real! and many times critical conditions.
Awesome article thank you! I agree 100%. The system pushes patients away when they are treated as if their symptoms are not serious and/or their illness does not exist. I am a Domestic Violence (DV) Survivor and the systems (like most of our society) does not understand DV or trauma and how to respect Survivors. We often end up getting more traumatized. Then you add in the cultural bias as you mentioned; ethnicity, LGBTQIA, age, immigration status, gender, etc. and it just gets worse. As someone who has experienced this harm repeatedly, I can attest to deciding to see allopathic providers as little as possible and sometimes not at all due to this. If they are going to invalidate and cause more trauma what is the point of going to them? (Rhetorical question). This means delayed diagnosis/help and more pain and suffering for the patient unfortunately. I think the system needs a complete overhaul starting with medical schools. However, because the system is based on profit not helping, I don’t see that happening anytime soon.
Thank you so much for sharing and highlighting how much DV/Trauma survivors and those with other stigmatized identities have even more of an uphill battle dealing with healthcare. I’m sorry for what happened to you; I can understand choosing to disengage with healthcare after that. It’s sad that that decision also creates its own harms to your health as you mentioned.
I think the best way ahead is to leave the old system to destroy itself, and focus on new ventures and health innovations that’s are built on top of the right incentives. It’s not about knocking down what already is (there’s too many powerful people invested in keeping it the same to keep their profits and will take decades to fully dismantle) but the people voting with their feet to put their financial resources into healthcare systems and clinicians that actually see them as people.
Yes, it is sad and hazardous when people feel the only choice is to disengage, particularly if one is disabled and needs allopathic healthcare. As I’m sure you know, it is getting much worse under the current administration.
Do you have ideas for how to build those new health innovations that “are built on top of the right incentives”? How does that take place? How do people “vote” to make this happen. I am interested to hear about this!
I have found that the best providers I can find are working outside the system and are out of pocket. Many cannot afford this unfortunately, and their health suffers needlessly as a result in my experience.
Those conditions mentioned are all classic functional disorders. I'm surprised patients are reporting no investigations - here a simple complaint of fatigue virtually automatically triggers a set of bloods. I wonder if patients are complaining because they don't continue to get investigated if the initial panel doesn't come up with anything? I suspect there is a lack of health literacy on the patient's part - the expectation we continue to investigate until an investigation lands a diagnosis - and poor communication on the clinician's part, that that's not how medicine works - that we're good at figuring out you don't have anything that will kill you, but not good at coming up with an explanation for miscellaneous aches and pains that won't.
My guess is that with fatigue, it’s more that labs are drawn, come back normal, and the doctor feels like his or her job is done. Meanwhile the patient is still suffering. I can understand how stopping after that makes patients feel abandoned
Really, doctor? You're not even going to touch the "patient illiteracy" comment? Or the very attitude you wrote about -- “just do labs” ?? Your article was EXCELLENT -- and yet you won't call out a med student from a different country for checks notes GASLIGHTING patients in this country and saying we must just not know how to communicate our symptoms??
In my journey to get answers ( I have ME/CFS), in response to my concerns about the debilitating fatigue, I was told to just exercise because I was out of shape. When I got emotional I was told that my symptoms were probably in my head… it took me years to see a doctor regularly for care. Even then I made sure to ask if my new PCP if they believed ME/CFS is real before committing to an appointment.
With all due respect you're not in the US and you have no idea how bad our corporate healthcare system is. And as far as "patient illiteracy" you can go fuck yourself. We are SO much more informed than the practitioners who spend maybe 5 minutes and won't look at multiple symptoms in context with one another -- they say pick one and you have to make another appointment for each other one. Your comment is actually a great example of epistemic reversal and you're too arrogant -- as a STUDENT not even a doctor yet (!!) to even see that. Kindly STFU.
Thank you! This article is perfect! I’ve had a complex systemic neurological autoimmune disease for the past 10 yrs (Sjogren’s, Dysautonomia,& MCAS). Before I walk into an appt my 1st thought is “will they believe my symptoms.” Sadly, my appt usually goes better if I bring a male family member. Also, in my experience if you are dismissed at the Dr then your family may dismiss you also & then you are left completely alone & suffering…its the most loneliness place I could imagine
Thank you for sharing your story. I’m so sorry that happened to you…It’s not right.
The part about things going better if you bring a male family…heartbreaking :( And I can’t imagine the pain and extra trauma of your family dismissing your illness along with the doctor…I can see how that would be so so lonely.
Again, thank you for sharing and I truly hope things get better for you!
As a woman with hEDS - self diagnosed before confirmed, and a retired veterinarian, I find this behavior by physicians inexcusable. The length of the appointment is irrelevant. I was gaslighted in the 70s and 80s when longer appointments were the norm. It’s not ok to be rude, dismissive or intellectually lazy.
This is how medical journey started 51 years ago at the age of 15. My mother was the only person who believed me. She took me from Dr to Dr…all said it was in my head. Went on my own in college and was told the same- nothing wrong- never referred to a rheumatologist🤬
At age 24 I had a closed head injury and in a vent from a car accident. Was in a coma for 9 days. Finally diagnosed with lupus and RA. I felt validated. As weird as this sounds it was a happy day to know finally a Dr took my concerns seriously. I loved my neurosurgeon. Without him I would not have gone back to school for my masters-
Thank you so much for this beautifully written article. I am running preclinical curriculum at UNECOM that focuses on trauma-informed care and advocacy/ structural competency. My first session with the second years this summer will be about diagnostic uncertainty. I would love to use this article to help us focus on the diagnostic equity component. You’ve eloquently synthesized this topic and I’m so grateful!
Thank you for your kind words! It’s been a long time - I hope you are well! Your curriculum sounds amazing. I’d be honored for you to use the article for teaching :)
It truly makes my heart happy to see so many people in medicine really working to change it for the better. You are one of those people and I appreciate you for it. Reach out any time if I can be helpful!
Last year a doctor told me that he couldn’t raise the dosage for my ADHD meds because I was at the upper limit of diagnostic recommendations. I sent him an article (published a month prior!) about the total lack of research on perimenopause and ADHD, and stated that those recs were incomplete, but that my qualitative data should be enough to recognize the need for an increase, because we are infinitely complex and all singular control groups.
Ultimately, I found a better doctor (older and female, go figure) and concluded that Ryan Tateishi of the Mindful Therapy Group does not care about actual patient experience, just adherence to whatever criteria he deems important.
I come from a medical family and have written about my experiences of medical gaslighting as a patient. More clinical studies on girls and women are necessary to understand our medical needs. After over 7 years, I finally was told that I have Lyme Disease. Providers insisted I have BPPV, did not do the Epley Maneuver long enough or that “sometimes it doesn’t work”, my symptoms were due to menopause…anything but doing a Lyme Panel until recently. I want my years back.
Med mal helps. When I faint and crack my head in the shower, I pray my family has the good sense to look at all my phone logs, letters and pleas. Someone needs to be accountable.
Great information here. Seven minutes. Sheesh. Diagnostics are an imperfect science. I have been lucky to find caring doctors who spend time. I referred residents with pain issues at the senior living community where I ran fitness to a doctor who I went to for injuries. Sports Medicine and arthritis issues. My only request of him was that if I personally refer someone. He fit them in as soon as possible. Almost 200. Everyone came back to me and raved about him. One patient at a time.
Yes it is. It rides as the backs of the sensitive. Whom is patholgizes for accurate environmental and personal assessment. Doctors don't take their sensitivity or environment into consideration. It provides no well being care. It's role is to deny, oppress and drug us back into labor.
No doctor is a healer. They serve the system. Keeping people alive to go back to work.
Loved your essay so much I featured it in my introductory note. I am a neurodivergent neurologist, with you fighting medical gaslighting of neurodivergent patients, the vast majority of whom develop chronic illness and/or chronic pain at some point in time
Gaslighting vs. not in one week: When my usual ragweed asthma didn't improve when it should have last October, I told my PCP, an internist, "something is going on in my lungs." Symptoms were largely asthmatic, so he sent me off to an allergist who did respiratory testing, where findings were "odd." Despite that, the allergist recommended (more) allergy testing and a follow-up in six months. My symptoms remained and my PCP listened and ordered a "light" chest CT preparatory to a pulmonologist consult. The chest CT revealed my Stage IIIb lung cancer. A six month return visit to the allergist might well have been a Stage IV sentence. Listen to your body and follow what it tells you.
This is nothing new. Modern medicine was a branding before it finally got therapeutics in the 1930s. After the Flexner report, attitude was woven into their training, perhaps to deflect the fact that they were working based on their own imperiousness rather than science.
There was some pushback in the late 60s through the 70s and early 80s from the women’s and Patients’ Rights movements, but this was also the time when medicine was moving from a public good to a moneymaking venture.
It didn’t last, and as corporations and now private equity takeovers, it’s a free-for-all against patients, especially women, and especially of color.
Thank you for your perspective. This is dead on!!
Some of us are still fighting. I am a neurodivergent neurologist. Check out my Substack and my podcast Clinical Misfits siring June 22!
this was such an interesting read!
It seems so frustrating the fact that medical gaslighting leads to care avoidance in the future. I feel for many people in my life who have gone into places seeking help and care, only to be treated with refusal towards their real! and many times critical conditions.
Exactly! - the care avoidance that results puts into perspective how gaslighting is directly harming people’s health. The damage runs deep.
Thank you so much for reading!
Awesome article thank you! I agree 100%. The system pushes patients away when they are treated as if their symptoms are not serious and/or their illness does not exist. I am a Domestic Violence (DV) Survivor and the systems (like most of our society) does not understand DV or trauma and how to respect Survivors. We often end up getting more traumatized. Then you add in the cultural bias as you mentioned; ethnicity, LGBTQIA, age, immigration status, gender, etc. and it just gets worse. As someone who has experienced this harm repeatedly, I can attest to deciding to see allopathic providers as little as possible and sometimes not at all due to this. If they are going to invalidate and cause more trauma what is the point of going to them? (Rhetorical question). This means delayed diagnosis/help and more pain and suffering for the patient unfortunately. I think the system needs a complete overhaul starting with medical schools. However, because the system is based on profit not helping, I don’t see that happening anytime soon.
Thank you so much for sharing and highlighting how much DV/Trauma survivors and those with other stigmatized identities have even more of an uphill battle dealing with healthcare. I’m sorry for what happened to you; I can understand choosing to disengage with healthcare after that. It’s sad that that decision also creates its own harms to your health as you mentioned.
I think the best way ahead is to leave the old system to destroy itself, and focus on new ventures and health innovations that’s are built on top of the right incentives. It’s not about knocking down what already is (there’s too many powerful people invested in keeping it the same to keep their profits and will take decades to fully dismantle) but the people voting with their feet to put their financial resources into healthcare systems and clinicians that actually see them as people.
Yes, it is sad and hazardous when people feel the only choice is to disengage, particularly if one is disabled and needs allopathic healthcare. As I’m sure you know, it is getting much worse under the current administration.
Do you have ideas for how to build those new health innovations that “are built on top of the right incentives”? How does that take place? How do people “vote” to make this happen. I am interested to hear about this!
I have found that the best providers I can find are working outside the system and are out of pocket. Many cannot afford this unfortunately, and their health suffers needlessly as a result in my experience.
Those conditions mentioned are all classic functional disorders. I'm surprised patients are reporting no investigations - here a simple complaint of fatigue virtually automatically triggers a set of bloods. I wonder if patients are complaining because they don't continue to get investigated if the initial panel doesn't come up with anything? I suspect there is a lack of health literacy on the patient's part - the expectation we continue to investigate until an investigation lands a diagnosis - and poor communication on the clinician's part, that that's not how medicine works - that we're good at figuring out you don't have anything that will kill you, but not good at coming up with an explanation for miscellaneous aches and pains that won't.
My guess is that with fatigue, it’s more that labs are drawn, come back normal, and the doctor feels like his or her job is done. Meanwhile the patient is still suffering. I can understand how stopping after that makes patients feel abandoned
:(
Really, doctor? You're not even going to touch the "patient illiteracy" comment? Or the very attitude you wrote about -- “just do labs” ?? Your article was EXCELLENT -- and yet you won't call out a med student from a different country for checks notes GASLIGHTING patients in this country and saying we must just not know how to communicate our symptoms??
In my journey to get answers ( I have ME/CFS), in response to my concerns about the debilitating fatigue, I was told to just exercise because I was out of shape. When I got emotional I was told that my symptoms were probably in my head… it took me years to see a doctor regularly for care. Even then I made sure to ask if my new PCP if they believed ME/CFS is real before committing to an appointment.
With all due respect you're not in the US and you have no idea how bad our corporate healthcare system is. And as far as "patient illiteracy" you can go fuck yourself. We are SO much more informed than the practitioners who spend maybe 5 minutes and won't look at multiple symptoms in context with one another -- they say pick one and you have to make another appointment for each other one. Your comment is actually a great example of epistemic reversal and you're too arrogant -- as a STUDENT not even a doctor yet (!!) to even see that. Kindly STFU.
Yay, another example of assho** in training thinking he/she is smarter than their future patients. I feel you prove the article points quite well.
Thank you! This article is perfect! I’ve had a complex systemic neurological autoimmune disease for the past 10 yrs (Sjogren’s, Dysautonomia,& MCAS). Before I walk into an appt my 1st thought is “will they believe my symptoms.” Sadly, my appt usually goes better if I bring a male family member. Also, in my experience if you are dismissed at the Dr then your family may dismiss you also & then you are left completely alone & suffering…its the most loneliness place I could imagine
Thank you for sharing your story. I’m so sorry that happened to you…It’s not right.
The part about things going better if you bring a male family…heartbreaking :( And I can’t imagine the pain and extra trauma of your family dismissing your illness along with the doctor…I can see how that would be so so lonely.
Again, thank you for sharing and I truly hope things get better for you!
As a woman with hEDS - self diagnosed before confirmed, and a retired veterinarian, I find this behavior by physicians inexcusable. The length of the appointment is irrelevant. I was gaslighted in the 70s and 80s when longer appointments were the norm. It’s not ok to be rude, dismissive or intellectually lazy.
This is how medical journey started 51 years ago at the age of 15. My mother was the only person who believed me. She took me from Dr to Dr…all said it was in my head. Went on my own in college and was told the same- nothing wrong- never referred to a rheumatologist🤬
At age 24 I had a closed head injury and in a vent from a car accident. Was in a coma for 9 days. Finally diagnosed with lupus and RA. I felt validated. As weird as this sounds it was a happy day to know finally a Dr took my concerns seriously. I loved my neurosurgeon. Without him I would not have gone back to school for my masters-
u of m , after year of rehab. Long road for sure
Thank you so much for this beautifully written article. I am running preclinical curriculum at UNECOM that focuses on trauma-informed care and advocacy/ structural competency. My first session with the second years this summer will be about diagnostic uncertainty. I would love to use this article to help us focus on the diagnostic equity component. You’ve eloquently synthesized this topic and I’m so grateful!
Thank you for your kind words! It’s been a long time - I hope you are well! Your curriculum sounds amazing. I’d be honored for you to use the article for teaching :)
It truly makes my heart happy to see so many people in medicine really working to change it for the better. You are one of those people and I appreciate you for it. Reach out any time if I can be helpful!
This piece perfectly exposes the issues affecting the practitioners and patients.
Last year a doctor told me that he couldn’t raise the dosage for my ADHD meds because I was at the upper limit of diagnostic recommendations. I sent him an article (published a month prior!) about the total lack of research on perimenopause and ADHD, and stated that those recs were incomplete, but that my qualitative data should be enough to recognize the need for an increase, because we are infinitely complex and all singular control groups.
Ultimately, I found a better doctor (older and female, go figure) and concluded that Ryan Tateishi of the Mindful Therapy Group does not care about actual patient experience, just adherence to whatever criteria he deems important.
I come from a medical family and have written about my experiences of medical gaslighting as a patient. More clinical studies on girls and women are necessary to understand our medical needs. After over 7 years, I finally was told that I have Lyme Disease. Providers insisted I have BPPV, did not do the Epley Maneuver long enough or that “sometimes it doesn’t work”, my symptoms were due to menopause…anything but doing a Lyme Panel until recently. I want my years back.
Med mal helps. When I faint and crack my head in the shower, I pray my family has the good sense to look at all my phone logs, letters and pleas. Someone needs to be accountable.
Great information here. Seven minutes. Sheesh. Diagnostics are an imperfect science. I have been lucky to find caring doctors who spend time. I referred residents with pain issues at the senior living community where I ran fitness to a doctor who I went to for injuries. Sports Medicine and arthritis issues. My only request of him was that if I personally refer someone. He fit them in as soon as possible. Almost 200. Everyone came back to me and raved about him. One patient at a time.
Yes it is. It rides as the backs of the sensitive. Whom is patholgizes for accurate environmental and personal assessment. Doctors don't take their sensitivity or environment into consideration. It provides no well being care. It's role is to deny, oppress and drug us back into labor.
No doctor is a healer. They serve the system. Keeping people alive to go back to work.
Loved your essay so much I featured it in my introductory note. I am a neurodivergent neurologist, with you fighting medical gaslighting of neurodivergent patients, the vast majority of whom develop chronic illness and/or chronic pain at some point in time
Gaslighting vs. not in one week: When my usual ragweed asthma didn't improve when it should have last October, I told my PCP, an internist, "something is going on in my lungs." Symptoms were largely asthmatic, so he sent me off to an allergist who did respiratory testing, where findings were "odd." Despite that, the allergist recommended (more) allergy testing and a follow-up in six months. My symptoms remained and my PCP listened and ordered a "light" chest CT preparatory to a pulmonologist consult. The chest CT revealed my Stage IIIb lung cancer. A six month return visit to the allergist might well have been a Stage IV sentence. Listen to your body and follow what it tells you.