Aa
VENT: If the doc feels his/her time is being wasted....
Warning. This is simply a rant and rave.
You know, it seems that no matter what the eventual diagnosis a common thread throughout these health forums; indeed throughout history, is that the dear ol' doc feels their valuable time is being wasted by the multi-complaint, mysteriously symptomed client. So what if time and again an actual disease raises its ugly head justifying the maligned, and now wrongfully pegged hysterical... hypochondriac... patient. Hmmm.
We have seen this manner of dealing with patients in texts and in movies going back ages. We have seen where some are eventually driven to deep depression and even suicide by their treatment in the medical community. So, wouldn't you think that by now doctors would have come up with a simple way by which to weed out those nasties who have the temerity to waste their time.
Wouldn't you think they might have thought to EDUCATE the patient for a better consult... by now. Really. Something as simple as a list of terms & definitions applicable to the type of consult scheduled so that the doctor and their patient are actually speaking the same language.
Maybe we should suggest it to the doctors we see for those of us yet to come. It would have helped me.
I'm tired of seeing where good people are torn down by those they go to for help.
(Not all doctors are bad. Definitely not. Some are great and go above and beyond. This Rant is about those who ignore the fact that the human body will ever be a changing and challenging mystery. This Rant is about those who already know it all.)
You know, it seems that no matter what the eventual diagnosis a common thread throughout these health forums; indeed throughout history, is that the dear ol' doc feels their valuable time is being wasted by the multi-complaint, mysteriously symptomed client. So what if time and again an actual disease raises its ugly head justifying the maligned, and now wrongfully pegged hysterical... hypochondriac... patient. Hmmm.
We have seen this manner of dealing with patients in texts and in movies going back ages. We have seen where some are eventually driven to deep depression and even suicide by their treatment in the medical community. So, wouldn't you think that by now doctors would have come up with a simple way by which to weed out those nasties who have the temerity to waste their time.
Wouldn't you think they might have thought to EDUCATE the patient for a better consult... by now. Really. Something as simple as a list of terms & definitions applicable to the type of consult scheduled so that the doctor and their patient are actually speaking the same language.
Maybe we should suggest it to the doctors we see for those of us yet to come. It would have helped me.
I'm tired of seeing where good people are torn down by those they go to for help.
(Not all doctors are bad. Definitely not. Some are great and go above and beyond. This Rant is about those who ignore the fact that the human body will ever be a changing and challenging mystery. This Rant is about those who already know it all.)
Well stated, Beach. I agree with everything you said. It is by our own experiences we are able to reach out to others as they search. Your post is very helpful.
Buffy, vent away. Use us as a sounding board. Most here know and remember their own painful journey to a dx.
Buffy, vent away. Use us as a sounding board. Most here know and remember their own painful journey to a dx.
A sheet of vocabulary and definitions would be nice... But I find that when I use accurate terms, some doctors are annoyed. Distrustful. Maybe they think that researching something and finding out how to describe it might mean you are faking?
I guess that a doctor who reacts that way is not the one for me. I told the new neuro point blank that I have been researching my disease and am able to understand it (as well as anyone does, I guess). He was okay with that. It is so sad that I would even have to tell you that he was okay with it--like that is something special. Unfortunately, it is special, because it is so unusual!
When I was about 20, I allowed a doctor to railroad me into a diagnosis of endometriosis as an explanation for the back pain I had experienced since the age of 12. It did not matter that I had not answered her questions as she had anticipated. She kept recycling question, interspersed with explanations of how much a specific medication regimen would help with pain. It was clear that I was not answering "correctly" sometimes, and she would keep asking the question in different ways until I gave her what she was looking for. She finally convinced me that I had it (yes, I was foolish to allow that).
When I saw the first neurologist for an MS attack (did not know what it was), he began to suggest migraines as his top reason for my symptoms. I did not allow him to get any further without asking why he thinks that, which symptoms, etc. I do not have migraines, but he was ready to go with that despite my symptoms not fitting the diagnosis.
Same with a diagnosis of depression when I saw another neuro. She had her mind made up, and it did not seem to matter how I answered her questions. So I asked her to answer mine, to explain her thinking. I asked her what symptoms I have of depression. She looked at the list and said, "Fatigue." That was it. Uh... that is a symptom of other conditions, si?
It is hard to be mentally present and listen well to a doctor when they are going off the deep end. But being an active listener makes us less of a target for these fools. I was going to say well-meaning fools, but I am not sure they are well meaning.
I am trying to listen to the doctor and respond--to answer their question and sometimes to challenge it politely.
I am learning to take a minute to collect my thoughts and make sure I have not forgotten something or left a significant problem unresolved before they show me the door.
And I am learning to verbalize what I see as my responsibilities and their responsibilities following the appointment. "OK, so I will get the JC virus test and think about which DMD I would like to try. You will look at my MRIs, ask Dr. R to call me about clinical trials, and call me about my bloodwork, right?" My current neuro got a little annoyed that I did that. Um, get used to it.
I am trying to be more of a partner, as someone on here suggested. Less of a victim. I want to work with the doctor, not let him work me over. Try not to let my respect for the white coat make me forget my self respect.
I guess that a doctor who reacts that way is not the one for me. I told the new neuro point blank that I have been researching my disease and am able to understand it (as well as anyone does, I guess). He was okay with that. It is so sad that I would even have to tell you that he was okay with it--like that is something special. Unfortunately, it is special, because it is so unusual!
When I was about 20, I allowed a doctor to railroad me into a diagnosis of endometriosis as an explanation for the back pain I had experienced since the age of 12. It did not matter that I had not answered her questions as she had anticipated. She kept recycling question, interspersed with explanations of how much a specific medication regimen would help with pain. It was clear that I was not answering "correctly" sometimes, and she would keep asking the question in different ways until I gave her what she was looking for. She finally convinced me that I had it (yes, I was foolish to allow that).
When I saw the first neurologist for an MS attack (did not know what it was), he began to suggest migraines as his top reason for my symptoms. I did not allow him to get any further without asking why he thinks that, which symptoms, etc. I do not have migraines, but he was ready to go with that despite my symptoms not fitting the diagnosis.
Same with a diagnosis of depression when I saw another neuro. She had her mind made up, and it did not seem to matter how I answered her questions. So I asked her to answer mine, to explain her thinking. I asked her what symptoms I have of depression. She looked at the list and said, "Fatigue." That was it. Uh... that is a symptom of other conditions, si?
It is hard to be mentally present and listen well to a doctor when they are going off the deep end. But being an active listener makes us less of a target for these fools. I was going to say well-meaning fools, but I am not sure they are well meaning.
I am trying to listen to the doctor and respond--to answer their question and sometimes to challenge it politely.
I am learning to take a minute to collect my thoughts and make sure I have not forgotten something or left a significant problem unresolved before they show me the door.
And I am learning to verbalize what I see as my responsibilities and their responsibilities following the appointment. "OK, so I will get the JC virus test and think about which DMD I would like to try. You will look at my MRIs, ask Dr. R to call me about clinical trials, and call me about my bloodwork, right?" My current neuro got a little annoyed that I did that. Um, get used to it.
I am trying to be more of a partner, as someone on here suggested. Less of a victim. I want to work with the doctor, not let him work me over. Try not to let my respect for the white coat make me forget my self respect.
Sorry folks... meant to point out the diff b/t fasciculation and fibrillation for muscle spasms. No matter how patient/well-meaning the doc is - if you aren't able to communicate accurately what is happening it will take much longer to get help. It is up to the patient, too. However, how many of us know beforehand this is going to be an issue. Doctors deal with this all the time.
Most people don't know how to be a good patient b/c they were healthy prior. If doctors tell a person to call if anything new develops and then get upset when that person does.... ? Docs need to get in the habit of detailed explanations/directions and out of the habit of being vague.
Most people don't know how to be a good patient b/c they were healthy prior. If doctors tell a person to call if anything new develops and then get upset when that person does.... ? Docs need to get in the habit of detailed explanations/directions and out of the habit of being vague.
I agree that once the lable has been applied it doesn't really ever come off. How many doctors ever say they are sorry for doubting? I've only had one doctor say they were sorry for the way I had been treated and that was for the other bad ones.
I think before the communication breakdown begins that a simple list fo terms/definitions such as fatigue and weakness, spasm (facsillation and fasciculation), cramp, etc. I can't remember all the terms I didn't knowat the beginning of it all. I still don't know a lot.
A simple sheet before the initial consult with terms and TIPS for getting the most out of your apt would be good for everyone involved... I think.
I think before the communication breakdown begins that a simple list fo terms/definitions such as fatigue and weakness, spasm (facsillation and fasciculation), cramp, etc. I can't remember all the terms I didn't knowat the beginning of it all. I still don't know a lot.
A simple sheet before the initial consult with terms and TIPS for getting the most out of your apt would be good for everyone involved... I think.
Yep... I hate it when the doctor already knows everything about you before 25 words have come out of your mouth. Case closed! My mind's made up, don't confuse me with the facts!
With my last neurologist, I feel sure that my appointments would NOT have run overtime had he just shut up and LISTENED to me from the beginning, instead of interrupting me every few seconds. Later in the appointment he started to listen, but not until we'd been on a time-wasting merry-go-round for quite awhile.
I think the thoughtful neurologists should share with their colleagues some helpful boilerplate to give patients that they are not able to diagnose. Someone on this board once posted excerpts from a letter from her neuro explaining beautifully why he could not diagnose her but laying out a positive, practical way to look at and deal with her situation. (I thought I'd saved that post but apparently I didn't.)
I wish EVERY neurologist could be so straightforward, so able to understand the patient's confusion and fears, address them fearlessly, and leave the patient with a feeling of resolution and validation, even if still undiagnosed. And the feeling that you are not left in the dust but will still be welcome to ask questions or tell new symptoms in the future, should they occur. Instead of simply being told "Don't know what's wrong with you; here's the door!"
(Sometimes I suspect that the neurologists, and perhaps other doctors, deliberately let the patient leave feeling upset and frustrated, deliberately don't engage the patient in a straightforward way--so that they won't come back! A way of shedding difficult patients.)
Honestly, I think most doctors by default consider most of their patients hypochondriacs until and unless proven otherwise. Even when proven otherwise, the taint of the hypochondriac remains forever. :(
With my last neurologist, I feel sure that my appointments would NOT have run overtime had he just shut up and LISTENED to me from the beginning, instead of interrupting me every few seconds. Later in the appointment he started to listen, but not until we'd been on a time-wasting merry-go-round for quite awhile.
I think the thoughtful neurologists should share with their colleagues some helpful boilerplate to give patients that they are not able to diagnose. Someone on this board once posted excerpts from a letter from her neuro explaining beautifully why he could not diagnose her but laying out a positive, practical way to look at and deal with her situation. (I thought I'd saved that post but apparently I didn't.)
I wish EVERY neurologist could be so straightforward, so able to understand the patient's confusion and fears, address them fearlessly, and leave the patient with a feeling of resolution and validation, even if still undiagnosed. And the feeling that you are not left in the dust but will still be welcome to ask questions or tell new symptoms in the future, should they occur. Instead of simply being told "Don't know what's wrong with you; here's the door!"
(Sometimes I suspect that the neurologists, and perhaps other doctors, deliberately let the patient leave feeling upset and frustrated, deliberately don't engage the patient in a straightforward way--so that they won't come back! A way of shedding difficult patients.)
Honestly, I think most doctors by default consider most of their patients hypochondriacs until and unless proven otherwise. Even when proven otherwise, the taint of the hypochondriac remains forever. :(
Here, here!
I am too tired to make a meaningful contribution to this discussion, except to second every word you said.
I am too tired to make a meaningful contribution to this discussion, except to second every word you said.
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