I want to preface this post with:
There is no known medical cure for CFS so don't go to your doctor expecting to get one!
Yesterday I talked about my experience with becoming sick and the futility I experienced for years being disabled with a “non-illness.” I learned a lot over the years about how to deal with doctors, how to get a diagnosis, and how to work with my doctor. First off if you’re sick you need to see a doctor, if you’re sick and disabled you need to have great documentation of your illness in order to get through the disability process successfully. And finally you need a doctor to support you during your illness and on your healing journey. So let me get this straight with you, I’m not against doctors or medicine, I think they’re necessary. What I am against is thinking that doctors are going to cure you or waiting for them to come up with a miracle cure, it’s not going to happen, the cure is within you and it takes work, commitment, dedication, persistence, and patience to heal from CFS.
Find a doctor that is able to appreciate that fatigue and other symptoms are a problem for you and will take the time to listen to your concerns. Your doctor should understand enough about fatigue to do proper evaluation, and be willing to go the distance with you even if that means referring you to another doctor or specialist. I say this because you may have other medical problems that are making your CFS worse like a thyroid problem for example and you might also need to see an endocrinologist.
The quickest way to alienate any doctor is to go into an appointment appearing overly anxious and to speal off a laundry list of symptoms. Many doctors tune out and start thinking you are a hypochondriac or your problem is anxiety or depression after you reach the tenth symptom. So when you see your doctor keep it simple and follow their lead. It’s much better to keep your initial complaint down to something concrete like, “I’m having a problem with fatigue, it just doesn’t seem to go away even when I get enough sleep.” You don't want that dreaded knee jerk reaction that many doctors seem to have: patient is crying or anxious, reach for prescription pad, write script for Proxac..
It’s unfortunate but very very true that…. “Most doctors, within the first 18 seconds of seeing a patient, will interrupt him telling his story and also generate an idea in his mind [of] what's wrong. And too often, we make what's called an anchoring mistake — we fix on that snap judgment.” Jerome Groopman, M.D., How Doctors Think
Doctors really dread patients that come in with “untreatable” symptoms like fatigue, it’s really true. I’ve done A LOT of research on this and there are actual programs of study for “dealing with the dreaded patient with fatigue” sorts of things.
Here’s a tip, don’t whine (doctors don’t like whiners anymore than adults like whining children); so try to avoid any undue whimpering. Crying and going on about your finances or other aspects of your life affected by your fatigue isn’t going to help your doctor ‘get it’ either. Your doctor is there to address your health and should understand the gravity and impact of your fatigue on your life and if you feel otherwise you should find another doctor.
If you’ve had bad experiences in the past and you feel you may hold a grudge against doctors you need to leave your attitude at the door in order to avoid alienating this doctor. Don’t be afraid to ask questions but let your doctor lead the conversation. Because time is usually limited you want to get the most out of the fifteen or twenty minutes that you do have.
My loooooong experience with doctors blowing me off and minimizing, trivializing, and dismissing my disabling fatigue and other symptoms caused me over time to shut down and this isn’t good either. I have a GREAT doctor now; they should clone him and send those clones out to populate the medical community. BUT when I first saw him I was completely programmed to not say anything about how I feel or any of my symptoms. When we were first starting to get to know each other (yes it’s a relationship) he asked me, “How did you feel to get on disability?” I said, “I just felt really crummy.” That’s it, I had learned over the years that there was NO POINT in my talking about my illness, it never got me anywhere.
But this doctor was different and now after 5 years I feel comfortable talking to him. He actually talks about CFS and uses phrases like your immune system, chronic fatigue syndrome, post-exertional malaise, and immunological flare.... will wonders ever cease??? Although I do have to say I went 2 years with a sinus infection telling him how much better I was feeling when the reality was far from the truth. After we ironed that out he asked me not to keep things from him anymore and I told him, “I’ll try not to.”
So don’t be a victim of the bad patient-doctor relationship. Be pragmatic, I have ____________ (symptom), it affects my life by ______________ (can’t work etc.)
But don’t be stoic either, be honest because your doctor isn’t a mind reader and all of your symptoms are important! Just wait until your doctor asks for them because doctors aren’t able to enter data into their minds like a computer, they need to think like everyone else. And they have their own order for assessing patients.
Go to your doctor with realistic expectations and with the attitude that you are a partner, an active participant and willing to be patient. It’s OK to express frustration just keep any anger outbursts to yourself. You can say this or that makes me angry but spending time in an anger tirade is only taking away precious time from your appointment.
Don’t be the dreaded ‘difficult patient’ by being seductive, too sexual, dependent, clingy, needy, hostile, dissatisfied or demanding, resistant to treatment recommendations, non-compliant with recommended treatment or bring up problems at the end of a visit... “Oh by the way doc!”
Look like you are serious about getting help and helping yourself. People with CFS aren’t going to get some magical cure when they see their doctor. Doctor’s help you manage your symptoms and they document your disability. They deal with conditions that are making your CFS worse, and they are GREAT sources of support when you find the right one and build a relationship. And just like any relationship that’s not going to happen in 15 minutes. It happens over time when you’re honest and you’re realistic about what your doctor can or cannot do. When it comes to CFS there just aren’t any miracle workers.
A doctor that really understands CFS knows that the way to recover is by proper diet, graded exercise, pacing, stressor reduction, and restorative sleep. And he/she will help you to manage your symptoms so that you can have a successful healing journey.
Finally avoid coming across like a malpractice suit waiting to happen or a problem patient. Don’t ever threaten a doctor, become unreasonably angry, belittle the care, or insist on a certain medication or tests not recommended. It’s important to know that if a doctor recommends a certain strategy and your response is something like you’ve tried that before and it didn’t work you are likely to be considered a malingerer or someone who is not serious about putting in any effort or doing your part. Unless the case is that you can elaborate and give some indication that you really have done your best at whatever the doctor is suggesting and you absolutely got no relief from it. It’s not going to do you any good at all to be labeled a princess, thick chart patient, train wreck, hateful or their very worst label, the “heart sink patient.”
You should be able to figure out pretty quickly if you’re not meshing with your doctor. If you honestly feel your doctor is giving you the run around or not taking you seriously, or if your expectations are not being met then find another doctor.
There is no known medical cure for CFS so don't go to your doctor expecting to get one!
Yesterday I talked about my experience with becoming sick and the futility I experienced for years being disabled with a “non-illness.” I learned a lot over the years about how to deal with doctors, how to get a diagnosis, and how to work with my doctor. First off if you’re sick you need to see a doctor, if you’re sick and disabled you need to have great documentation of your illness in order to get through the disability process successfully. And finally you need a doctor to support you during your illness and on your healing journey. So let me get this straight with you, I’m not against doctors or medicine, I think they’re necessary. What I am against is thinking that doctors are going to cure you or waiting for them to come up with a miracle cure, it’s not going to happen, the cure is within you and it takes work, commitment, dedication, persistence, and patience to heal from CFS.
Find a doctor that is able to appreciate that fatigue and other symptoms are a problem for you and will take the time to listen to your concerns. Your doctor should understand enough about fatigue to do proper evaluation, and be willing to go the distance with you even if that means referring you to another doctor or specialist. I say this because you may have other medical problems that are making your CFS worse like a thyroid problem for example and you might also need to see an endocrinologist.
The quickest way to alienate any doctor is to go into an appointment appearing overly anxious and to speal off a laundry list of symptoms. Many doctors tune out and start thinking you are a hypochondriac or your problem is anxiety or depression after you reach the tenth symptom. So when you see your doctor keep it simple and follow their lead. It’s much better to keep your initial complaint down to something concrete like, “I’m having a problem with fatigue, it just doesn’t seem to go away even when I get enough sleep.” You don't want that dreaded knee jerk reaction that many doctors seem to have: patient is crying or anxious, reach for prescription pad, write script for Proxac..
It’s unfortunate but very very true that…. “Most doctors, within the first 18 seconds of seeing a patient, will interrupt him telling his story and also generate an idea in his mind [of] what's wrong. And too often, we make what's called an anchoring mistake — we fix on that snap judgment.” Jerome Groopman, M.D., How Doctors Think
Doctors really dread patients that come in with “untreatable” symptoms like fatigue, it’s really true. I’ve done A LOT of research on this and there are actual programs of study for “dealing with the dreaded patient with fatigue” sorts of things.
Here’s a tip, don’t whine (doctors don’t like whiners anymore than adults like whining children); so try to avoid any undue whimpering. Crying and going on about your finances or other aspects of your life affected by your fatigue isn’t going to help your doctor ‘get it’ either. Your doctor is there to address your health and should understand the gravity and impact of your fatigue on your life and if you feel otherwise you should find another doctor.
If you’ve had bad experiences in the past and you feel you may hold a grudge against doctors you need to leave your attitude at the door in order to avoid alienating this doctor. Don’t be afraid to ask questions but let your doctor lead the conversation. Because time is usually limited you want to get the most out of the fifteen or twenty minutes that you do have.
My loooooong experience with doctors blowing me off and minimizing, trivializing, and dismissing my disabling fatigue and other symptoms caused me over time to shut down and this isn’t good either. I have a GREAT doctor now; they should clone him and send those clones out to populate the medical community. BUT when I first saw him I was completely programmed to not say anything about how I feel or any of my symptoms. When we were first starting to get to know each other (yes it’s a relationship) he asked me, “How did you feel to get on disability?” I said, “I just felt really crummy.” That’s it, I had learned over the years that there was NO POINT in my talking about my illness, it never got me anywhere.
But this doctor was different and now after 5 years I feel comfortable talking to him. He actually talks about CFS and uses phrases like your immune system, chronic fatigue syndrome, post-exertional malaise, and immunological flare.... will wonders ever cease??? Although I do have to say I went 2 years with a sinus infection telling him how much better I was feeling when the reality was far from the truth. After we ironed that out he asked me not to keep things from him anymore and I told him, “I’ll try not to.”
So don’t be a victim of the bad patient-doctor relationship. Be pragmatic, I have ____________ (symptom), it affects my life by ______________ (can’t work etc.)
But don’t be stoic either, be honest because your doctor isn’t a mind reader and all of your symptoms are important! Just wait until your doctor asks for them because doctors aren’t able to enter data into their minds like a computer, they need to think like everyone else. And they have their own order for assessing patients.
Go to your doctor with realistic expectations and with the attitude that you are a partner, an active participant and willing to be patient. It’s OK to express frustration just keep any anger outbursts to yourself. You can say this or that makes me angry but spending time in an anger tirade is only taking away precious time from your appointment.
Don’t be the dreaded ‘difficult patient’ by being seductive, too sexual, dependent, clingy, needy, hostile, dissatisfied or demanding, resistant to treatment recommendations, non-compliant with recommended treatment or bring up problems at the end of a visit... “Oh by the way doc!”
Look like you are serious about getting help and helping yourself. People with CFS aren’t going to get some magical cure when they see their doctor. Doctor’s help you manage your symptoms and they document your disability. They deal with conditions that are making your CFS worse, and they are GREAT sources of support when you find the right one and build a relationship. And just like any relationship that’s not going to happen in 15 minutes. It happens over time when you’re honest and you’re realistic about what your doctor can or cannot do. When it comes to CFS there just aren’t any miracle workers.
A doctor that really understands CFS knows that the way to recover is by proper diet, graded exercise, pacing, stressor reduction, and restorative sleep. And he/she will help you to manage your symptoms so that you can have a successful healing journey.
Finally avoid coming across like a malpractice suit waiting to happen or a problem patient. Don’t ever threaten a doctor, become unreasonably angry, belittle the care, or insist on a certain medication or tests not recommended. It’s important to know that if a doctor recommends a certain strategy and your response is something like you’ve tried that before and it didn’t work you are likely to be considered a malingerer or someone who is not serious about putting in any effort or doing your part. Unless the case is that you can elaborate and give some indication that you really have done your best at whatever the doctor is suggesting and you absolutely got no relief from it. It’s not going to do you any good at all to be labeled a princess, thick chart patient, train wreck, hateful or their very worst label, the “heart sink patient.”
You should be able to figure out pretty quickly if you’re not meshing with your doctor. If you honestly feel your doctor is giving you the run around or not taking you seriously, or if your expectations are not being met then find another doctor.