I asked my pain mgmt doc for an MRI of my post-op knee that was CRANKY and huge and not healing according to the prescribed timeline. She said she didn't want to step on the surgeon's toes and declined. So I went back to the surgeon and asked him to order the MRI, explained why, and he did. When I brought the results to the Pain Doc, she said, and I quote "Huh - you're a stubborn one." Not tenacious, determined, persistent - no - none of those more positive adjectives - I was 'stubborn'. I still think about that almost 10 years later.
This is timely, I was just reviewing my file history looking up anything to do with heart and BP as I just had a Tilt Table Test and was waiting for results and if there was anything to bring to my physician.
It turned into a rabbit hole of remembrances of gaslighting.
Like the time I was labeled with dependent personality trait as after years of seeing a counselor I was still going
because I was being treated for depression and never had remission.
Trusted and trialed 17 antidepressants. Over 14 years.
So a new Psychiatrist finally listened to my ‘fatigue is just part of depression’ and diagnosed me with ME Myalgic Encephalomyelitis.
Also the clinical psychologist diagnosed Autism.
Both explained so much. I do not get back my depression years but going forward I can thrive.
Back to too many appointments = dependence. I asked how they came to that conclusion and one point it was because I never missed an appointment.
I did not miss appointments before depression but was not asked.
I did a supervised exercise program and reported it made my depression worse.
When my psychiatrist said just do 20 of cardio three times a week I did say I am not doing that but would continue with what worked for me as was given another note of “doing things her own way” and not a compliment.
For example that at I would not do anything 2 days before my appointment, and often after it would take a week to recover my energy.
But most importantly I was never asked for details on my fatigue.
The Starbucks I brought to my appointment was ordered on the app and picked up at the drive through and was most likely a meal replacement as preparing food was too difficult.
Anyways I finally am that difficult patient. And not apologizing for seeking answers or seeking to correct the record.
At the Tilt Table test appointment I was able to Depression off my conditions in MyChart and replaced with ME Myalgic Encephalomyelitis.
( that had it’s own biases but that is another story )
Thank you for sharing this. This is such a clear example of how medicine pathologizes persistence, asking questions, and seeking answers into defiance. I guess being engaged is being difficult sometimes. I’m glad someone finally listened even though it doesn't give you all the years back.
The first person to hand me this label was my mother. She even suggested it should be my middle name.
I've advocated for my daughters in a school--I'm that difficult parent.
I've advocated for my daughters in the doctor's office--especially for Sheila. The pediatrician did not label me difficult--instead he treated me as the most important part of her health care team. But once she transitioned to adult medicine... those doctors labeled me as difficult.
How I wish you were my physician. I don't know if you read the posts to your stories whose humaness some of us are drawn to, but hopefully you might. I have found that by asking a simple question gives one a safe space to respond. "Will you let me know when you're ready to (show condition)? This let's people know they are respected and have a choice. You may get a request for a follow up visit because that person is working thru their feelings of shame or self-consciousness.
What a great point you brought up! “Will you let me know when you’re ready?” is such a simple question, but it changes the entire power dynamic. It says: you’re in control, and I’m here with you. I like that. I will start using that.
"Difficult," it seems, stems from previous trauma from some source. If we can look past our response of anger, hurt, or defensiveness, and ask some questions, maybe we can break through the wall they have erected and provide some healing. It may not be physical healing, possibly just showing someone cares.
My mother was fired from more than one Dr who labeled her noncompliant when she refused to be gaslighted into saying there was nothing wrong with her or after she refused to stay on bp meds that made her act crazy. She thrust the phone toward that Dr and challenged him to call me to get my account of what had happened.
I’ve been stonewalled by drs who clearly hoped I would agree that I was similarly a hypochondriac. Then I got a wonderful woman as my pcp and things began to change. She was willing to say things like “Ideopathic means we drs are idiots and don’t know the path.” When she moved out of state I cried - a lot.
I have since then had two more female drs - ophthalmologist and rheumatologist - who are very sympathetic and convincing that what I have I have. The latter even found a heart condition my new, not terrible pcp completely missed. Because of that I have made an appointment with that male Dr. who put my husband on bp meds but not me even though I have been hypertensive every visit for more than a year. I’m not waiting until my cardiology appointment in May.
Your mother refusing to be gaslit, being labeled “noncompliant,” and even fired for insisting on her reality is the perfect example of a system that punishes people who won’t participate in their own erasure. This takes clarity and courage! I wish it didn't have to be this way.
Isn't it actually the case that the patient is the one who has the option to "fire" the doctor, given that they're paying for his or her services? Would it be more accurate to say that the doctor gave up on the patient and/or lacked the skills necessary to continue?
I am going to suggest a further revision - your health is 'complex' - this word is still descriptive but has fewer negative connotations than 'complicated' and that nuance matters - we deserve that grace and neutrality.
I routinely read the post-visit reports filed on my patient portal, and point out errors wherever they occur. I think some of these reports are based on boilerplates the doctor simply adjusts to fit each patient, and things are often missed. I’m sure I am a “difficult” patient. Real-life office visits are very brief and I want the on-line record to be complete and accurate; I use them as reference (I have some cognitive issues) as much as the doctor does. Errors in these reports make me question the quality of care I am receiving, even though my doctor has a good reputation.
I am just starting to be mindful of all the errors that show up due to technology. I have a test that was ordered by my physician and the template picked my NP that moved over a year ago.
Difficult, intimidating, somatizing, etc. My agency is viewed as mental illness because my presentation and objective test results don’t fit the algorithm (even though they are abnormal). My abnormal tests are viewed as “likely normal for you”, even though they aren’t. And, my normal tests are further evidence that I’m the problem. Doctors label me because they can’t explain me. I’m habitually viewed as an unreliable narrator in my own lived experience because they don’t understand what’s happening to me. I can appreciate them not knowing but to label me and paint me with a particular brush is abuse. Full stop. The more I advocate for myself, the more difficult and crazy they think I am and the deeper the hole I dig for myself. It’s debating to turn to the institution that is supposed to be here to save my life, and my family’s lives, only to have them build a smear campaign against me and cause irreparable harm via gaslighting, neglect and erroneous chart notes and subsequent labeling.
When clinicians can’t explain a patient, the system too often flips the problem onto the patient: your agency becomes “mental illness,” your abnormal results become “normal for you,” and your normal results become evidence that you are the problem. I've seen that unfold in front of my very eyes and I am certain I have participated in it myself. It makes you feel crazy, which perhaps is what they want you to feel anyway....
Thanks for exploring the difficult patient label. Twenty-five years ago, my best friend was diagnosed with ovarian cancer. She was fearless, direct, and took control of her health care journey. She had an oncologist that listened to her. I learned so much about advocating for people in the hospital and with doctors. It helped me with my parents, my son, my uncle, and myself.
Recently I went in for surgery and when I said I wanted my husband to stay in the hospital with me, they said we don't do that except in rare conditions. But we kept pushing and asking. When the presurgery nurse heard that our home was 1 1/2 hrs away, she started advocating for him to stay (she should have advocated for him to stay anyway, but I wasn't going to argue with her about that, I just took the win). They did let him stay and it was certainly helpful for me as I had a challenging night.
At another time when I was going through severe depression, I experienced the difficult title in various ways, one time when I was angry at my therapist and GP because I didn't agree with what they were saying needed to be done. I had good reason to be angry, for different reasons, with both of them. I eventually was able to have conversations with both of them to express my feelings and be heard, with the help of a new therapist. Being angry as a woman can often cause one to be labeled as difficult.
THANK YOU so much for this. I was recently treated as "difficult" and gaslit by an orthopod who performed a THR on me and I have had serious complications that he refused to address. You words and acknowledgement of the issue helps patients feel less alone, fearful, and demoralized. Please keep up the good work. It makes a difference for us, whether you see it or not.
I am currently trying to work through a rare spinal disease and major neurosurgery with comments like these.
I was described as demanding by an orthopedic surgeon when all I did was cry in pain asking for another opinion. That was one and a half years into having deteriorating neurological symptoms after a highway motor vehicle accident with a semi 3 years ago.
I have C-PTSD from medical gaslighting and bodily harm and violations directly impacted from mental health bias.
Being a middle-aged woman with mental health issues has made me realize just how broken the medical system is for rare disease patients.
There are so many things related to this I'd like to talk about, but much is too personal to tackle in this space. I finally found a PCP I absolutely love but she is about to leave not just her practice but the country.
An example not as personal as some: many years ago I started having pain that could loosely have been described as abdominal. It started when our very young daughter was in the hospital. (Heck, we were the "difficult" parents then because we kept telling medical people we knew something was not right, and pediatricians and nurses at two different practices kept saying either nothing was wrong or she'd grow out of it. Upshot was that when we got to someone competent, after less invasive treatments initially, she needed the surgery.)
Skipping massive details of that debacle, which included having to go to three pediatric specialists between two hospitals, about ten days after she got home, my doc did a laparoscopy and found nothing.
I was sent to a hand specialist, as I was having pain there, too. He was a highly-paid idiot who regularly ran an hour late and rarely even looked at my face, just my hands. He diagnosed multiple "tunnel" syndromes and had me do various things that didn't help. My oldest sister, who had it herself, said "I think you may have fibromyalgia." When I relayed this to the specialist, the dollar signs went out of his eyes and he said, "then I can't help you."
Next stop, neurologist. She put me through a couple of gosh-awful tests that involved needles and electric shocks, which were every bit as much fun as they sound. And oh yeah, an MRI to rule out a tumor, even though she didn't think that was the cause. She finally jabbed a couple of her fingers into one of the tender spots on my lower back, and I about hit the ceiling. That led to, "it may be fibromyalgia, but a lot of doctors don't think that exists."
Honestly, after all that, I don't recall what she recommended. Rheumatologist, maybe?
Surely I saw the paperwork back then, but it turned up just last year somehow. To my shock and disgust, I saw that the upshot of it all was that she told my referring physician that she thought what I really needed was to see a psychiatrist.
I asked my pain mgmt doc for an MRI of my post-op knee that was CRANKY and huge and not healing according to the prescribed timeline. She said she didn't want to step on the surgeon's toes and declined. So I went back to the surgeon and asked him to order the MRI, explained why, and he did. When I brought the results to the Pain Doc, she said, and I quote "Huh - you're a stubborn one." Not tenacious, determined, persistent - no - none of those more positive adjectives - I was 'stubborn'. I still think about that almost 10 years later.
This is timely, I was just reviewing my file history looking up anything to do with heart and BP as I just had a Tilt Table Test and was waiting for results and if there was anything to bring to my physician.
It turned into a rabbit hole of remembrances of gaslighting.
Like the time I was labeled with dependent personality trait as after years of seeing a counselor I was still going
because I was being treated for depression and never had remission.
Trusted and trialed 17 antidepressants. Over 14 years.
So a new Psychiatrist finally listened to my ‘fatigue is just part of depression’ and diagnosed me with ME Myalgic Encephalomyelitis.
Also the clinical psychologist diagnosed Autism.
Both explained so much. I do not get back my depression years but going forward I can thrive.
Back to too many appointments = dependence. I asked how they came to that conclusion and one point it was because I never missed an appointment.
I did not miss appointments before depression but was not asked.
I did a supervised exercise program and reported it made my depression worse.
When my psychiatrist said just do 20 of cardio three times a week I did say I am not doing that but would continue with what worked for me as was given another note of “doing things her own way” and not a compliment.
For example that at I would not do anything 2 days before my appointment, and often after it would take a week to recover my energy.
But most importantly I was never asked for details on my fatigue.
The Starbucks I brought to my appointment was ordered on the app and picked up at the drive through and was most likely a meal replacement as preparing food was too difficult.
Anyways I finally am that difficult patient. And not apologizing for seeking answers or seeking to correct the record.
At the Tilt Table test appointment I was able to Depression off my conditions in MyChart and replaced with ME Myalgic Encephalomyelitis.
( that had it’s own biases but that is another story )
Thank you for sharing this. This is such a clear example of how medicine pathologizes persistence, asking questions, and seeking answers into defiance. I guess being engaged is being difficult sometimes. I’m glad someone finally listened even though it doesn't give you all the years back.
Thank you for your comment.
And feel comforted that you are sharing your personal experiences for the greater good.
Of course I have been labeled, "difficult."
The first person to hand me this label was my mother. She even suggested it should be my middle name.
I've advocated for my daughters in a school--I'm that difficult parent.
I've advocated for my daughters in the doctor's office--especially for Sheila. The pediatrician did not label me difficult--instead he treated me as the most important part of her health care team. But once she transitioned to adult medicine... those doctors labeled me as difficult.
Signed, Difficult and Proud 😂
💙 Exactly. What is “difficult” is often just refusal to disappear. Proud as you should be!
How I wish you were my physician. I don't know if you read the posts to your stories whose humaness some of us are drawn to, but hopefully you might. I have found that by asking a simple question gives one a safe space to respond. "Will you let me know when you're ready to (show condition)? This let's people know they are respected and have a choice. You may get a request for a follow up visit because that person is working thru their feelings of shame or self-consciousness.
What a great point you brought up! “Will you let me know when you’re ready?” is such a simple question, but it changes the entire power dynamic. It says: you’re in control, and I’m here with you. I like that. I will start using that.
"Difficult," it seems, stems from previous trauma from some source. If we can look past our response of anger, hurt, or defensiveness, and ask some questions, maybe we can break through the wall they have erected and provide some healing. It may not be physical healing, possibly just showing someone cares.
My mother was fired from more than one Dr who labeled her noncompliant when she refused to be gaslighted into saying there was nothing wrong with her or after she refused to stay on bp meds that made her act crazy. She thrust the phone toward that Dr and challenged him to call me to get my account of what had happened.
I’ve been stonewalled by drs who clearly hoped I would agree that I was similarly a hypochondriac. Then I got a wonderful woman as my pcp and things began to change. She was willing to say things like “Ideopathic means we drs are idiots and don’t know the path.” When she moved out of state I cried - a lot.
I have since then had two more female drs - ophthalmologist and rheumatologist - who are very sympathetic and convincing that what I have I have. The latter even found a heart condition my new, not terrible pcp completely missed. Because of that I have made an appointment with that male Dr. who put my husband on bp meds but not me even though I have been hypertensive every visit for more than a year. I’m not waiting until my cardiology appointment in May.
Your mother refusing to be gaslit, being labeled “noncompliant,” and even fired for insisting on her reality is the perfect example of a system that punishes people who won’t participate in their own erasure. This takes clarity and courage! I wish it didn't have to be this way.
Isn't it actually the case that the patient is the one who has the option to "fire" the doctor, given that they're paying for his or her services? Would it be more accurate to say that the doctor gave up on the patient and/or lacked the skills necessary to continue?
I like to think my health is "complicated"... not that I am "difficult". But some doctors have brought out the "difficult" in me.
I am going to suggest a further revision - your health is 'complex' - this word is still descriptive but has fewer negative connotations than 'complicated' and that nuance matters - we deserve that grace and neutrality.
I routinely read the post-visit reports filed on my patient portal, and point out errors wherever they occur. I think some of these reports are based on boilerplates the doctor simply adjusts to fit each patient, and things are often missed. I’m sure I am a “difficult” patient. Real-life office visits are very brief and I want the on-line record to be complete and accurate; I use them as reference (I have some cognitive issues) as much as the doctor does. Errors in these reports make me question the quality of care I am receiving, even though my doctor has a good reputation.
I am just starting to be mindful of all the errors that show up due to technology. I have a test that was ordered by my physician and the template picked my NP that moved over a year ago.
Difficult, intimidating, somatizing, etc. My agency is viewed as mental illness because my presentation and objective test results don’t fit the algorithm (even though they are abnormal). My abnormal tests are viewed as “likely normal for you”, even though they aren’t. And, my normal tests are further evidence that I’m the problem. Doctors label me because they can’t explain me. I’m habitually viewed as an unreliable narrator in my own lived experience because they don’t understand what’s happening to me. I can appreciate them not knowing but to label me and paint me with a particular brush is abuse. Full stop. The more I advocate for myself, the more difficult and crazy they think I am and the deeper the hole I dig for myself. It’s debating to turn to the institution that is supposed to be here to save my life, and my family’s lives, only to have them build a smear campaign against me and cause irreparable harm via gaslighting, neglect and erroneous chart notes and subsequent labeling.
When clinicians can’t explain a patient, the system too often flips the problem onto the patient: your agency becomes “mental illness,” your abnormal results become “normal for you,” and your normal results become evidence that you are the problem. I've seen that unfold in front of my very eyes and I am certain I have participated in it myself. It makes you feel crazy, which perhaps is what they want you to feel anyway....
So important -- Thank you for the wisdom, insights, vulnerability and commitment to helping bring forth something different. I'll be sharing.
Thanks for exploring the difficult patient label. Twenty-five years ago, my best friend was diagnosed with ovarian cancer. She was fearless, direct, and took control of her health care journey. She had an oncologist that listened to her. I learned so much about advocating for people in the hospital and with doctors. It helped me with my parents, my son, my uncle, and myself.
Recently I went in for surgery and when I said I wanted my husband to stay in the hospital with me, they said we don't do that except in rare conditions. But we kept pushing and asking. When the presurgery nurse heard that our home was 1 1/2 hrs away, she started advocating for him to stay (she should have advocated for him to stay anyway, but I wasn't going to argue with her about that, I just took the win). They did let him stay and it was certainly helpful for me as I had a challenging night.
At another time when I was going through severe depression, I experienced the difficult title in various ways, one time when I was angry at my therapist and GP because I didn't agree with what they were saying needed to be done. I had good reason to be angry, for different reasons, with both of them. I eventually was able to have conversations with both of them to express my feelings and be heard, with the help of a new therapist. Being angry as a woman can often cause one to be labeled as difficult.
THANK YOU so much for this. I was recently treated as "difficult" and gaslit by an orthopod who performed a THR on me and I have had serious complications that he refused to address. You words and acknowledgement of the issue helps patients feel less alone, fearful, and demoralized. Please keep up the good work. It makes a difference for us, whether you see it or not.
I am currently trying to work through a rare spinal disease and major neurosurgery with comments like these.
I was described as demanding by an orthopedic surgeon when all I did was cry in pain asking for another opinion. That was one and a half years into having deteriorating neurological symptoms after a highway motor vehicle accident with a semi 3 years ago.
I have C-PTSD from medical gaslighting and bodily harm and violations directly impacted from mental health bias.
Being a middle-aged woman with mental health issues has made me realize just how broken the medical system is for rare disease patients.
Seems to me what they're really saying is, I don't know what to do now and I don't like not knowing so I'll blame you.
There are so many things related to this I'd like to talk about, but much is too personal to tackle in this space. I finally found a PCP I absolutely love but she is about to leave not just her practice but the country.
An example not as personal as some: many years ago I started having pain that could loosely have been described as abdominal. It started when our very young daughter was in the hospital. (Heck, we were the "difficult" parents then because we kept telling medical people we knew something was not right, and pediatricians and nurses at two different practices kept saying either nothing was wrong or she'd grow out of it. Upshot was that when we got to someone competent, after less invasive treatments initially, she needed the surgery.)
Skipping massive details of that debacle, which included having to go to three pediatric specialists between two hospitals, about ten days after she got home, my doc did a laparoscopy and found nothing.
I was sent to a hand specialist, as I was having pain there, too. He was a highly-paid idiot who regularly ran an hour late and rarely even looked at my face, just my hands. He diagnosed multiple "tunnel" syndromes and had me do various things that didn't help. My oldest sister, who had it herself, said "I think you may have fibromyalgia." When I relayed this to the specialist, the dollar signs went out of his eyes and he said, "then I can't help you."
Next stop, neurologist. She put me through a couple of gosh-awful tests that involved needles and electric shocks, which were every bit as much fun as they sound. And oh yeah, an MRI to rule out a tumor, even though she didn't think that was the cause. She finally jabbed a couple of her fingers into one of the tender spots on my lower back, and I about hit the ceiling. That led to, "it may be fibromyalgia, but a lot of doctors don't think that exists."
Honestly, after all that, I don't recall what she recommended. Rheumatologist, maybe?
Surely I saw the paperwork back then, but it turned up just last year somehow. To my shock and disgust, I saw that the upshot of it all was that she told my referring physician that she thought what I really needed was to see a psychiatrist.