1. < Autoimmune Diseases

Tired of the gaslighting

Posted by cwitton1 @cwitton1, Jan 5 8:24am

I am done.
No more doctors. They’ve gaslit me, passed me off, placated me with unnecessary tests, tried detrimental drug therapies. No more “specialists” who pass you along to the next because it’s “not my job”. They straight up don’t believe anything I say. I am done. This journey that started in 1989 with a case of mononucleosis has ruined my life. I am done chasing answers and being mentally traumatized by doctors’ lack of empathy or concern. I am tired of reading my after visit notes and finding errors- things we never discussed or blatant lies about being examined. I am sick to death of being told it’s just anxiety manifesting or my brain tricking my body to make it *think*there’s pain when “there isn’t”. There is pain. A lot of pain, and I do not wonder at all why people with autoimmune disorders or chronic conditions- chronic pain patients, take unthinkable measures. News flash:NSAIDS don’t do squat for pain. They only wreck your kidneys and liver. What I have learned in the last 35 years is you can trust no one but yourself. Doctors are not there to help you. Doctors are there to make money and feel important about themselves. Doctors refuse to tell us, “I don’t know.” I’m tired, and it’s become more of a self preservation technique to just walk away. No more visits. No more medications. Whatever will be, will be. Call me a quitter. I don’t care. We were brought up to think if you’re sick, go to a doctor and they will help you get better. If your pain is new or gets worse, go to your doctor. They will figure out the cause. This is bs. No one’s going to help you. No one’s going to believe you. You will begin to question your sanity and eventually come to the conclusion that you’re on your own. The power dynamic in medicine is huge. They may have paid for an education, but I am not stupid and I know my body. This is me, finally defeated, jaded and hopeless. This is me accepting that this is how the rest of my life will be, forever. It’s not an exciting, rosy prospect. This is me, and I am done.

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pb50 | @pb50 | Feb 26 6:50pm

If you’re inclined to go into the city, when I lived there in 2011-2015, I had an outstanding woman Rheumy at hospital for special surgery (not limited to surgery - go figure on the name). They are on upper east side in 80’s and easy to maneuver in.

REPLY
1kay2 | @1kay2 | Feb 26 7:11pm
In reply to @inminn "I think in the case of medical patients, it refers to the long history of countering..." + (show)
@inminn

I think in the case of medical patients, it refers to the long history of countering any complaints for which they have little understanding with trying to convince us that our conditions are due to some psychological problem (especially if a female patient), attention seeking, drug seeking, hypochondria, “lifestyle choices”, and so on. Doctors have dismissed as quacks integrative health testing for such things as gut biome imbalance, gluten intolerance, and acupuncture as new age nonsense, only to be proven wrong time and time again and even to eventually have it confirmed by research, and then to embrace and recommend such supposed quack treatments decades later. Western Medicine in general finds it easier to throw pills at patients in order to dull symptoms rather than to take the time and make the effort to investigate the root cause of problems.
Examples are gluten intolerance, yeast and mold sensitivity, leaky gut, endometriosis, chronic fatigue, Lyme disease, fibromyalgia, IBS, bacterial stomach ulcers, hypothyroidism, etc., but remember doctors also originally rejected as preposterous the idea of germs, hand washing, the usefulness of vaccines, and they used to smoke while working in the hospital.
They also (generally) have the grave fault of not seeming to understand statistics. If the majority of patients diagnosed shared certain symptoms it does not mean 100% of them present typically. Trying to convince patients that they are not feeling what they are feeling, or that they don’t know what is unusual for their own bodies is gaslighting.

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That is my situation. I have FM, so all is blamed on FM.

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1 reply
inminn | @inminn | Feb 26 11:45pm
In reply to @1kay2 "That is my situation. I have FM, so all is blamed on FM." + (show)
@1kay2

That is my situation. I have FM, so all is blamed on FM.

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I’m sorry to hear that, but it is all too common.
That is why, despite the temptation to give up and give in to frustration and depression, I’ve been working on changing my mindset. I’m being more honest with myself about what I really can do so I can be as active or busy as possible, among other changes to try to have the best remainder of my life possible, even if medical science doesn’t ever have the knowledge in my lifetime to actually help me. I know I’ll still have bad mood days, but I’ve let my health issues run my life for much too long.
I wish everyone dealing with chronic diseases and disorders the best, I hope you stay strong, don’t let it, defeat you, and I hope and pray that those of you who are younger benefit from the current research into the rising rates of chronic inflammation, fibromyalgia, autoimmune disorders, etc. and related DNA research which will in time finally provide answers and treatments, if not cures and preventative strategies.

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Joanne Narna | @mothermary1 | Feb 27 5:07am

Hi, I’m only going to chime in about inconsistency in doctors notes. I think it is happening so much. It recently happened at my endocrinologist and my pcp. The worst was my pcp. We literally spoke, he never examined me but wrote all sorts of notes about the exam.
I’m extremely outspoken about my health and called him out. He tried to pass it off as a way Medicare bills. I had some not so kind words for him and I’m on my search to change.
The problem is all the good doctors are not taking new patients. I called 27 just last week after compiling a list, reading bios and reviews. Not one taking new patients. We are left in a very bad situation.
This doctor at Emory in Georgia sat at his computer and I sat in a chair talking. I was waiting to be examined but nothing. I should have spoken up but in the end I have portal messages to confirm the error and him admitting to it and would go in and change his notes. How do they get away with it. It’s to me because of Medicare. It pays so little to the doctors they hate it. Sorry, but I worked since age 14 and Medicare is what I have, so treat me the same as your higher insurances you accept that pay better. It’s discusting that this goes on.
Good luck

REPLY
3 replies
pb50 | @pb50 | Feb 27 7:23am
In reply to @mothermary1 "Hi, I’m only going to chime in about inconsistency in doctors notes. I think it is..." + (show)
@mothermary1

Hi, I’m only going to chime in about inconsistency in doctors notes. I think it is happening so much. It recently happened at my endocrinologist and my pcp. The worst was my pcp. We literally spoke, he never examined me but wrote all sorts of notes about the exam.
I’m extremely outspoken about my health and called him out. He tried to pass it off as a way Medicare bills. I had some not so kind words for him and I’m on my search to change.
The problem is all the good doctors are not taking new patients. I called 27 just last week after compiling a list, reading bios and reviews. Not one taking new patients. We are left in a very bad situation.
This doctor at Emory in Georgia sat at his computer and I sat in a chair talking. I was waiting to be examined but nothing. I should have spoken up but in the end I have portal messages to confirm the error and him admitting to it and would go in and change his notes. How do they get away with it. It’s to me because of Medicare. It pays so little to the doctors they hate it. Sorry, but I worked since age 14 and Medicare is what I have, so treat me the same as your higher insurances you accept that pay better. It’s discusting that this goes on.
Good luck

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I’ve noticed the same thing on my chart. I agree Medicare has most of the docs over a barrel - but that’s not a green light to falsify what you did. I too notice references to exam components where they would have to actually touch me or look at something specific to know. At most my pcp feels my thyroid. Otherwise he is buysyntyping up what he supposedly attended to. My pulmonologist listens with his stethoscope in a few places.

This was in the visit notes in my last visit to my pulmonologist.

Review of Systems:
As per above. All systems were reviewed with her in totality and there were no further positive findings. Presently no bleeding or bruising. No dysuria, hematuria, fever, chills, nor sweats. No lymph nodes, no rashes, TIAs, seizures, passing out spells, or suicidal ideation. No unstable angina.

I was not asked about a single one of those conditions other than my temp was taken along with blood pressure - so he can say fever was not present. That’s it. I had on long sleeves and long pants , and had bruising on my arm from a fall. But he says “no bruising”

Something is just not right about this.

I will say my Rheumy is accurate in his descriptions. As is my cardiologist. But even my Rheumy has been influenced to order monitoring blood work like liver enzymes less frequently.

Sorry to lapse into whining. But it’s alarming to me. If something does develop, I’m not sure who will notice.

The stunner about retiring and tapping Medicare is that medically I became deserving of little time and less concern. They all but pat me on the head on their way out the door. I had of course heard this refrain from friends before - but you have to experience it to really get it.

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jdnc2023 | @jdnc2023 | Feb 28 6:58am
In reply to @mothermary1 "Hi, I’m only going to chime in about inconsistency in doctors notes. I think it is..." + (show)
@mothermary1

Hi, I’m only going to chime in about inconsistency in doctors notes. I think it is happening so much. It recently happened at my endocrinologist and my pcp. The worst was my pcp. We literally spoke, he never examined me but wrote all sorts of notes about the exam.
I’m extremely outspoken about my health and called him out. He tried to pass it off as a way Medicare bills. I had some not so kind words for him and I’m on my search to change.
The problem is all the good doctors are not taking new patients. I called 27 just last week after compiling a list, reading bios and reviews. Not one taking new patients. We are left in a very bad situation.
This doctor at Emory in Georgia sat at his computer and I sat in a chair talking. I was waiting to be examined but nothing. I should have spoken up but in the end I have portal messages to confirm the error and him admitting to it and would go in and change his notes. How do they get away with it. It’s to me because of Medicare. It pays so little to the doctors they hate it. Sorry, but I worked since age 14 and Medicare is what I have, so treat me the same as your higher insurances you accept that pay better. It’s discusting that this goes on.
Good luck

Jump to this post

I have just noticed the same thing on my chart. I'm not on Medicare yet. The notes have stayed the same since my first visit, and I've been going every 6-8 weeks since July 2023. None of the medications have made any difference so far, so I assumed that's why the notes didn't change.

REPLY
1 reply
Joanne Narna | @mothermary1 | Feb 28 7:35am
In reply to @jdnc2023 "I have just noticed the same thing on my chart. I'm not on Medicare yet. The..." + (show)
@jdnc2023

I have just noticed the same thing on my chart. I'm not on Medicare yet. The notes have stayed the same since my first visit, and I've been going every 6-8 weeks since July 2023. None of the medications have made any difference so far, so I assumed that's why the notes didn't change.

Jump to this post

Never assume anything is the norm in medical. We need to be our best and only advocate for getting good care. Now, I call out every doctor who does not write correct notes in his or her summary of my visit. I’m never allowing it to happen again. I think it puts that doctor on alert as to how you follow your health.
The big part is, it’s wrong and I have to think illegal too.
If you read something that never happened you call, leave a message to speak only to the doctor and state I read major discrepancies in his or her notes. Trust me they call. You can also go to a department head to file a complaint and also patient advocacy.
Joanne

REPLY
2 replies
m | @mh10 | Feb 28 9:24am
In reply to @mothermary1 "Hi, I’m only going to chime in about inconsistency in doctors notes. I think it is..." + (show)
@mothermary1

Hi, I’m only going to chime in about inconsistency in doctors notes. I think it is happening so much. It recently happened at my endocrinologist and my pcp. The worst was my pcp. We literally spoke, he never examined me but wrote all sorts of notes about the exam.
I’m extremely outspoken about my health and called him out. He tried to pass it off as a way Medicare bills. I had some not so kind words for him and I’m on my search to change.
The problem is all the good doctors are not taking new patients. I called 27 just last week after compiling a list, reading bios and reviews. Not one taking new patients. We are left in a very bad situation.
This doctor at Emory in Georgia sat at his computer and I sat in a chair talking. I was waiting to be examined but nothing. I should have spoken up but in the end I have portal messages to confirm the error and him admitting to it and would go in and change his notes. How do they get away with it. It’s to me because of Medicare. It pays so little to the doctors they hate it. Sorry, but I worked since age 14 and Medicare is what I have, so treat me the same as your higher insurances you accept that pay better. It’s discusting that this goes on.
Good luck

Jump to this post

I noticed the same thing with most of my doctors! I’m not Medicare, I have Blue Cross Blue Shield, so they are lying to you saying it’s because of Medicare. When I read the notes on my portal, nothing is true in there that they claimed they did and I said. I have just about lost all trust with all doctors. They don’t help and they lie.

REPLY
1 reply
farmgrrl57 | @farmgrrl57 | Feb 28 9:42pm

I have many times felt the same. I tried to quit. I really did. I'm too stubborn and I know my truth. I have resolved that I may/ probably will never get an answer and if I did, there would be no cure only treat the symptoms. I already have that and have nothing to lose, so I do my own research on my symptoms, ask Dr. what they think. Depending on their reply, I either come back or move on. I refuse to waste my time on any more foolishness. I hope you change your mind, but I do understand why you're done.

REPLY
farmgrrl57 | @farmgrrl57 | Feb 29 12:48am
In reply to @mothermary1 "Never assume anything is the norm in medical. We need to be our best and only..." + (show)
@mothermary1

Never assume anything is the norm in medical. We need to be our best and only advocate for getting good care. Now, I call out every doctor who does not write correct notes in his or her summary of my visit. I’m never allowing it to happen again. I think it puts that doctor on alert as to how you follow your health.
The big part is, it’s wrong and I have to think illegal too.
If you read something that never happened you call, leave a message to speak only to the doctor and state I read major discrepancies in his or her notes. Trust me they call. You can also go to a department head to file a complaint and also patient advocacy.
Joanne

Jump to this post

It is indeed illegal. It's called insurance fraud if they bill for something they never did. I've had several drs. that did that, and it infuriates me.

REPLY
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