(+99 rating, 113 votes)
Loading ...Dear Patients:
You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.
You scare doctors.
No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.
Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain - is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.
So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.
So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
- Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
- Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
- Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
- Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
- Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
- Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
- Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.
Sincerely,
Dr. Rob
Post Script: This post has generated a huge amount of conversation and interest (as witnessed by the large number of comments!). I very much appreciate the dialogue it has spawned both here and across the web. I’ve subsequently written follow-up posts explaining my thoughts in more detail – largely in response to the comments here. One of them discusses in more detail my own experiences as a doctor and the second talks of the importance of knowing and being known. Reading these will give you a better picture of my thought process and perspective on this.
Dr. Rob
Loading ...
{ 232 comments }
← Previous Comments
Well said!
Thank you so much for this article. Not only do I fight with multiple cronic diseases, but 4 of them are rare ones, making it more diffucult for drs. to understand the problem, then add the fact that I have many of them. This article has really helped me.
Thank you,
Amanda
Yes, Daybreak2010 used the term “insane manner” rather than quoting your exact words, but, by your own descriptions, your behavior was not normal behavior for you. Perhaps it didn't seem normal to the doctor either. This is not to imply that he referred you to the psychiatrist simply because of your reaction to this specific test. As a patient with chronic pain and a degenerative disease, as well as Arnold Chiari syndrome, I believe that it was quite appropriate for your doctor to ask you to perform this test to replicate your symptoms. Many times a doctor has to be able to actually see what's going on to correctly diagnose the problem. My pain specialist has asked me on several occasions to do pain inducing tests and it is obviously to help me. Clearly I trust my doctor, and we have a good partnership. This takes time and work.
Also, there could be several reasons that he wants you to have a consult with a psychiatrist. Chronic illness goes hand-in-hand with depression. If you weren't depressed before becoming ill, it can be very difficult not to succumb to it dealing with everything that chronic illness bring to our lives. Moreover, depression can exacerbate pain and make people irratable and quick to make judgements that are negative. Could your doctor be sensing these things in you? Many doctors leave diagnosing and treating depression up to the shrinks because that is their speciality. None of this means you are a liar.
That said, after reading your posts, I have to say that I am taken aback by your comment
“Is it so wrong of me to expect my neurologist to accept what I tell him as the truth, rather than insisting on “seeing it for himself”? If he can't respect me enough to believe what I tell him, how can I respect him as a person? ” Yes, it is wrong of you for a couple reasons. First, your doctor is a scientist who is there to diagnose and, if possible treat you. As such, he/she needs all info possible to to a good job. Your doctor needs to be polite but he is not your friend. If you simply want to tell someone how you feel, with no questions asked to help reach an accurate diagnosis, then tell a friend. If you want an accurate diagnosis, then help your doctor and stop being so defensive. I don't believe you were being disrespected, but jumping to this conclusion was a sure way to alienate your doctor and, in turn, do a disservice to yourself. This is especially true since you say that he has generally done right by you in the past. First, ASK QUESTIONS. This would have at least opened up a dialogue. You could have even asked him if he thought you were lying or malingering. Instead, it seems as though you simply took affront to the whole experience rather than trying to clarify things. I sure wouldn't have left the office without asking some questions such as “What is causing my dizziness? What did that test show? Why do you want me to see a psychiatrist? I got the feeling you weren't believing me, is that true? ” Depending on what he said, I'd probably ask some more questions. It sounds like your let assumptions and defensiveness hinder that progress. Managing chronic health problems is a team effort. Sometimes we have to take a look at our own self-defeating behavior before we jump to conclusions about the other team players.
Last, but not least, I would find a good therapist with some experience in dealing with chronic illness and/or pain. They can help you with your perceptions (“Is the doctor be disrespectful or not” with objectivity and help you learn to advocate for your self in a non-threatening way so that you get the care you want and deserve. They can also teach you some tricks to getting what you need out of your relationship with your doctor even if he happens to be having an off day or is just plain difficult. I say this with the utmost sincerity because as a fellow sufferer you know that you don't need the hassle and this can help you make it better. It is your life and your money.
As a medical professional who has worked with physicians and patients alike for 16 years this is very powerful stuff. I found myself on the other side of the table three years ago when I was diagnosed with polymyositis…it has completely changed my life. It made me better at my job. I got to see the patient's perspective for the first time in my career. While i'm not a physician…as an clinical assistant, I am a major player in the care of my patients…our patients. I am the first line of defense when a patient doesn't understand why you haven't “fixed” them. It is frustrating…from both sides.
I applaud your honesty and frankness with this letter. You've certainly said what all of the doctors of the world only think. As a medical professional and as a patient…Thank you.
N
I've had several doctors be disrespectful toward me, but I've also had a few that seemed to just want to get rid of me and/or were very unorganized. I never stopped to think that, hello, doctors are people, too, and it must be really intimidating to not be able to give someone answers when they expect you to know everything.
I also have to admit that I haven't seen a doctor in months because it's depressing on my part to continuously not get answers. I really need to schedule an appointment with my PA and see if I can get a referral to a specialist at Yale. My friend has been telling me for years that I should go.
Anyway, thanks for this letter, Dr. Rob.
The best thing any doctor — my chiropractor — ever said to me was, “I hate to send you away without answers or improvement, but I also hate to see you waste your time and money coming here when nothing is working.”
I can understand why they would be scared of us, but I think that as long as they are respectful and at least make an attempt, they are still doing their best. I've had a rheumatologist tell me to see a psychiatrist because, after two visits, she couldn't figure out what was wrong with me.
I also think it is bull that a patient — ANY patient — should have to come into the office for test results that can be given over the phone. I've only had one doctor's office call me for test results, and they have my utmost respect.
I'm annoyed that some people are jumping all over you for your original comment (about being told by your doctor to see a psychiatrist after he did a test that caused you a lot of pain and ended up causing you to say things you wouldn't have normally said). I'm not even going to bother replying to any of them, but I just wanted to let you know that I've had a similar experience and I can understand your frustration. I think my jaw hit the floor when my rheumatologist told me it might help to see a psychiatrist. She had seen me only once before, ordered blood work, and when the blood work came back negative, she suggested the psychiatrist, implying that it might be all in my head.
No one with chronic illness wants to hear “go see a psychiatrist.” Yes, a psychiatrist can help with pain management and with managing the inevitable depression that comes with chronic illness. But the referral has to be approached very carefully. We just want to be taken seriously. None of us want to be brushed off or looked at as though we are crazy. We all want to be respected, no matter the situation.
I am not crazy, either, and did not deserve to be treated the way that particular rheumatologist treated me. You didn't deserve it, either. I'm sorry that any of us are dealing with chronic illness.
*hugs*
That part bothered me, too. I thought about it a little more, though, and I think Dr. Rob meant that when we go into a doctor's office, we should not expect them to have all of the answers. I don't think he was saying that we need to baby them. I think he was truly just trying to give us another perspective — which, of course, doesn't count when you're dealing with crap doctors. I had to reread the tips, because I almost left a comment similar to yours. I can completely understand where you're coming from, though. *hugs*
Thank you.
*Hugs*
Thank you VERY much, Nikkie
I agree. The last thing I want is to tell someone with medical disease to “go see a psychiatrist.” Sorry to hear about your experience.
I don't know what to say. I'm appalled. I'm so sorry you had to deal with any of this. *hugs*
Oh how I love your article. I have found it to be so true….respect and a little willingness on both sides goes such a long way. I find if I go in good humoured, with a concise list, and the attitude that I expect to be considered part of the team things usually go very well.
I have long term chronic Lymes disease diagnosed so late all that can be achieved now is a long term holding pattern. I now have a wonderful medical doctor who has very little ego and is happy to learn from me, and I from her. We both know I won't get better, my liver is too shot for IV antibiotics, and I have yearly invasive biopsies for cancer which I dealt with years ago. That alongside an autoimmune thryoid disorder and a bi-polar tendency. In fact I have so many illnesses I feel faintly embarassed. As Americans would say; 'enough already'…lol.
One doctor really harmed me years ago. He was very kind but paternal and patriarchal. My hunch said his choices were wrong but he refused to listen to me. I refused to listen to me. His treatment harmed me very much. So now I avoid doctors who fear dialogue with their patient. But I am respectful, I know they have far more knowledge than I and can correctly evalutate suggestions I come with. But I too have special knowledge born of 14 years of experience. Mostly my doctor trusts my judgement and I hers, as does my consultant. I feel safe with them but I don't abandon my own judgment or instinct. It seems to work best for us this way.
Whenever I have to see a new doctor or consultant I bring a list. On it I list my conditions and the medications I'm on for each, along with relevant family history and drugs I'm allergic to. It gives a simple overview and map of my medical history which I find simplifies matters for both of us. That and a friendly manner has served me very well.
I have come across the very occasional nasty doctor. Those I report and never revisit. I have only had to do this twice, once for a doctor and once for a particularly nasty nurse. I feel I am protecting others by reporting them and also giving them a chance to address their behaviour. I also make sure the good healthcare professionals, which is most of them, hear all about it. I am very grateful to them and they deserve to know it.
It should not be us against them. We are a team, battling pain and building quality of life. Thankyou Dr Rob.
Thank you for a great article. I often marvel at my Rheumatologist. I know many of his patients get and worse and of course live in chronic pain. For 16 years he has been kind, consistent, caring, and conservative in his treatments. I built our relationship by regular appts even when I was doing well. I wanted him to know me when I was NOT in pain so that he had perspective when I was in pain. I invested in the relationship. That was a good decision on my part.
My husband has 3 herniated discs and chronic pain. He has seen many doctors. Even though his MRI's show his injury he still is sometimes treated with disrespect. Treated as if it is somataform. My sister had two back surgeries. So as a family we have had a lot of experience with doctors who discount the patient view. Because she was a scientist my sister did a LOT of research, and as you wrote, this threatened some of her specialists.
Thank you for your kind and thoughtful article. Thanks for writing the truth. BPLadybug
If it makes you feel better (it may make you laugh, that's good enough for me) my doctor was doing a right SI RFN (lg probe between 2 bones to fry nerves) without IV meds like it is usually done. It would have been a longer wait ti get a surgery room, etc so he asked me if I thought I could handle it…. sure, cakewalk doc! I've had lot's of procedures with just locals… yeah…
Well after I heard the crunch of the probe going in between 2 bones, he asked what I was feeling and I said, “I feel like I want to get off this table and punch you! but I have this thing in my back so I'll wait”. He understood, it was a new machine and “though it said it was more painful it also is supposed to be more effective. I am sorry.” I still think he's the best doc I have and I didn't punch him though he understood the impulse.
Daybreak2010 must think she's really smart… or she's in the field… BUT SHE DOESN'T KNOW YOU! (so she can suck it!) And “they” should NEVER tell US we need to see a shrink! Maybe that “it might help to cope if you discuss this…” but if the motivation is anything else, they aren't part of the solution. JMO! And, no, I don't go around punching people! (I may hit them in the foot with my cane if they cut me off though!)
Thank you very much for writing this post. I think it is very insightful and honest. I think that you really have a lot of respect for patients knowledge and I am always very grateful to meet a doctor who has respect for patients. The ability to research, think, and understand is not limited to people with MDs.
I have had years of my life and tens of thousands of dollars wasted because of doctors egos. After I developed patchy and diffuse numbness and dizziness along with other symptoms, I did a lot or research and it was clear to me that I had an uncommon presentation of small fiber neuropathy, but none of the specialists would even consider it. They would freak out if I brought them an article from a medical journal. I and went to multiple neurologists and had tens of thousands of dollars in unnecessary tests. I was often laughed at, mocked, shamed by people who were supposed to help me. I finally got fed up and stopped seeing doctors for several months and my symptoms progressed to the point that I ended up passing out on the kitchen floor. Even then I refused to go to another doctor and have someone tell me that I was just another hysterical young female.
The next day I ordered my medical records and took at chance with a neuromuscular specialist at the Cleveland Clinic who finally heard me out and agreed to order the appropriate tests that confirmed that I had small fiber neuropathy.
From now on when I see a new doctor I tell them this story so that I am sure that they understand that I am an informed patient and I also let them know that I don’t expect them to fix all my problems or know everything. I have found that most doctors respond very well to this.
What was frustrating is when I was undiagnosed and desperately in need or respect, guidance, and cooperation. It was then that doctors were afraid of me and when I saw that fear it drove me further into despair and depression. I found that the sicker I was, the less support I got from friends, family, and physicians. Can you imagine that terrible feeling? To be given the message that your body failing makes you unworthy of love support and kindness? My future looked bleak indeed, and for a while I even considered suicide. It is sad that some of the most desperate people who get some of the worst treatment by the medical profession.
When dealing with the undiagnosed and complex patients, this is the most important time for doctors to lower their ego because the ego blocks the doctor from thinking in a method that is needed needed to help the patient. The neurologists I saw were skilled and smart enough to diagnose me, but because they were unable to admit that they did not know everything, they failed. Their mind was closed and they could not consider the possibility that they needed to expand their knowledge in order to diagnose me and they could not consider that a young woman with no medical training might have already found the answer. There are times when the doctors ego is priority number one and patients health priority number two.
I think that in order to move forward in improving doctor-patient relationships, we have to get away from magical thinking. Patients need to figure out that doctors don’t have a magic wand or magic pill, and doctors need to set realistic expectations for the patient in terms of what modern medicine is capable of. I think doctors eagerness to impress patients has resulted in many patient safety issues such as over prescribing antibiotics and over use of CT scans. I have personally seen patients throw a tantrum because he doctor refused to prescribe antibiotics for a cold. Patients need to take responsibility too. They need to accept that what they want is not always possible.
Instead of fearing being stripped of the medical god title, I think doctors and patients should embrace it. Both doctors and patients need to accept the limits of modern medical science because when that happens, I think that health care will improve Doctors will stop being afraid to embrace new knowledge, and patients will stop demanding that their lives be improved though inappropriate treatments.
Dr. Rob, You are right. I know that Dr.s’ are human and want to be treated with respect, calm and admiration. In the beginning of my illness, I really thought that a Dr. could cure me with traditional Western methods. I thought, this will end right? It is just a round of some sort of drug, some physio etc. and then I will be better and get on with my life. My injury happened with the birth of my second child, an epidural gone wrong, she turned 7 this June.
I have had some amazing Dr.s. and some crappy ones. My pain specialist and former GP gave me the one thing I needed, HOPE. They didn’t want to give up on me and still worked to find a solution to my pain and to manage it while I have it. Going into those offices and not being treated like a Drug Seeking Crazy Addict, made the world of difference.
I have Neuropathic Pain, so you can’t see it on a test (MRI, CT etc.), so if you can’t see a tumour, disc herniation or obvious injury, I don’t make sense. I get that it is frightening and overwhelming for a Dr. but that does not give them the right to treat us, sometimes, with disgusting dismissal.
Recently, I was told by a Dr. that he was going on Vacation, so how was he going to manage my meds. He said, “I thought you were temporary, I would have to see you once a month and I simply don’t have time for a patient like you.” My jaw almost dropped to the ground. He took my case a year ago, when my regular GP left her practice. My response to him was “I am not sure what you thought was temporary. This happened in 2003.”
Does he not see, that on a BASIC HUMAN LEVEL, his absences affect the ability for me to care for my children. His dismissal affects my ability to have any quality of life. How can someone who takes an Oath to do no harm, say something like that? I am disposable to him. He receives his payment from our Gov’t to have me as a patient. However, I am basically paying for his vacation time. Why treat someone like me who is going to cost him money and impinge on his “me” time.
With a shortage of GPs’ in Canada, and now with a different payment structure. Nobody wants someone like me. So where do we go?
My childhood GP made housecalls, and this guy wants vacation more than patients? Why did he become a Dr.?
Don’t mean to sound like a whiny child, but what about me???? What about my husband??? What about my children??? Are we all an intrusion on his “me” time?
You have no idea how very, so very much, it means for a Dr. to say “How are you?” with real empathy and kindness. Many times that is all we need. We have so many people that ignore, don’t get us, abandon us; what do we do when we can’t have our Dr.s?
I wish that most Dr.s would read your letter, but maybe we should have a patient letter too?
Sometimes all we need in return is what you said in this letter “I know it sucks and I want to help, let’s keep trying until we get there.”
I have to say in defense of Rachels’ rant. I didn’t take it as her calling Dr. Rob out or his staff. I took it as a “to all you jackass dr.s and staff out there”. The problem is for us, it isn’t that easy to get another Dr. It is alot of work. Some of us are exhausted by the end of the day, just by existing. Now we have to take responsbility for all of our medical records, appts, meds, research etc. We are tired, so very tired and although what you said is the reality of our situation, it still makes us mad.
Our condition consumes us whole, so to add on another search, another dr. visit, another test, another med, another appt. It makes us angry. We are spending money hand over fist, waiting in rooms that are painful to do (sitting in an office for 2 hours is very, very hard). We get angry. So, I think Rachel is just venting her frustration in General. It was a rant for those that don’t care about us.
B/C my pain specialist has snuck me in for emergancy visits, and he takes so much time for me in every visit, I don’t mind waiting for an hour. I know, that when I go there, he will be 1 hour late. However, just in case he isn’t, I am on time. B/C that isn’t just a case of his time being valuable and mine, but maybe the patient that he snuck in to give a result to, or who needed meds or who needed a shoulder to cry on.
I know Rachels anger, I feel it too. There are times when I want to smash something, I am so angry. It is a sad day in the medical profession when we are surprised when we get seen on time, treated with dignity and respect and by someone who actually gives a good God damn how we are. So, don’t take offense to Rachel, she, like me, is just generally mad.
There is a systems solution for some of the problems faced by people with chronic conditions: the medical home concept. If you have a doctor who has gotten on-board with the medical home concept, s/he will be accessible 24/7, you will be triaged in a way that acknowledges your condition/needs, you will have a team approach with all team members reporting back to one another. Best case scenario, a care coordinator (often a nurse, a CNS or nurse practitioner) will coordinate all the issues and team members and documentation. They will work from a plan of care aimed at your individual needs relative to your condition. Family will be included. You will be instrumental in designing the plan of care and will be considered a team member on equal footing with docs, specialists, pharmacy, therapists, etc. The American Academy of Pediatrics recommended this long ago (was it 1994?), and PCPs have picked up on this concept as much as or moreso than pediatricians across the country. ASK YOUR DOC IF S/HE CAN PROVIDE YOU A “MEDICAL HOME” AND SEE WHAT S/HE SAYS.
Rob, your post and all the responses prompted me to be more thoughtful as I visited my PCP this week. This is a new doc for me in that I don’t go to the doc regularly and I have only seen him once on an initial visit–a year and a half ago. I didn’t think that visit went real well, so I resolved to start fresh with some of the ideas in your post and in the responses. I put together my own “history and physical” with background and lifestyle issues included. I typed it neatly. Though it came to three pages, I made it readable by giving two lines to each issue, and highlighting key words or facts or numbers, such as vital statistics, height, weight, pulse, blood pressure, etc. You know, the way you’d compose your resume or curriculum vitae. I could see that the doc was going to cover everything in my history and physical, everything that I had typed. This alone made me feel good–that he was able to ask good triage questions and bring up the most important issues based on my age. He also remembered that first and only visit one and a half years ago–and that made me feel he had prepared for the visit or actually remembered me! So we did start afresh to build a relationship. I made it a point to be polite and I smiled and he responded in kind. A wise crack got me a wise crack in return. At one point when I refused a med he suggested, he said “I won’t argue with you . . . . .” and that made me feel good about the relationship-building as well. I told him I planned to do something risky as a part of my hobby–he said “Practice before you actually do that”. He didn’t try to take the decision out of my hands. All in all, a very good visit. I want to thank Rob and all you who wrote–you really helped me to do the give-and-take thing with my PCP.
This is great! I find that approach, including the preparation, works everytime. And if it doesn’t I pause proceedings till I get the response I need. When I was pregnant I went into a consulstant ObGyn for the first time. He didn’t even look up from his papers, just gestured to the couch and asked me to undress so he could examine me.
I just stood there without moving. Eventually since I wasn’t doing as he asked he looked up. When he met my eyes I said, ‘Hi, I’m Sophie. What is your name’ and I held out my hand.
He completely apologised for his manner. He said he was exhausted but that it was no excuse. We got on well after that.
Yes to both of you! Thank you for the stories! These are prime examples of how if you treat doctors differently, they actually may act differently. I don’t defend the OB for being gruff – he apologized for doing so, and he should have apologized – but “a gentle word turns away anger.”
This makes me glad that I blog. Thank you both.
Hi, Elizabeth (and everyone else living with chronic illness). I am quite intrigued by this discussion, as I am in my second year of medical school studying naturopathic medicine. I find Dr. Rob’s post to be interesting because it reflects the sense that I get from my colleagues in the conventional medical field. I think they are really good at dealing with acute illness and certainly at addressing symptoms, but sometimes they don’t have the time or the training to really get to the cause of illness — followed by cure (sometimes due to choice, more often not). In my first year of school, we have learned a lot about chronic illness. In fact, this really seems to be where NDs (naturopathic physicians) excel. Your story resonated because I hear all the time in school about people in similar situations: experiencing all of the symptoms of a particular disease, but no test results that support that diagnosis. Oftentimes, NDs go more on the patient’s experience than on a diagnosis. In fact, for this reason, many NDs do not accept insurance (either because they are not covered if they work in unlicensed states or because they don’t want their hands tied with ICD9 codes and so on). NDs are fully trained primary care doctors who seek to provide life-long care to you and your family, so the idea of taking a lot of time to work closely with someone surviving a chronic illness is not a thing to be feared. I have heard many stories of people suffering for years from rheumatoid arthritis (with and without supportive test results), people reliant on canes and pain medications to make it through the day — people who are willing to work with a naturopath who maybe figures out the root of such systemic inflammation. I’ve heard stories of people no longer needing pain medications after learning that they are allergic or sensitive to some food that their body cannot digest. Remove the food, lose the inflammation, cure the chronic illness.
Certainly there are many many factors involved in chronic illness and perhaps I am just as naive (or more so) as a poster below who still feels hope. I just read these posts and they break my heart, but they also inform my future practice. I believe there are MDs out there who are not afraid of chronic illness and who believe that it is not all in your head. But I KNOW that there are NDs out there who will listen, strive to understand, take the time to get the whole picture, and maybe even be able to work with you to the point of cure and true health.
I wish everyone on this blog the best.
I think Elizabeth Kaylene says it best: *hugs*
Thanks for your input! I don’t have a problem “going outside the mainstream” to try to alleviate my difficulties. However, the problem arises when “many NDs do not accept insurance”. I’m on disability, and with my husband’s income we’re barely making ends meet. You may be telling the gospel truth about how NDs excel at treating patients with chronic disease–but if you don’t/won’t take insurance, I”ll never find out!
Nightshade — You are absolutely correct and it is certainly one of the many points of debate within the community. The insurance question depends on the state, the insurance company, and the provider. I live in Washington State where NDs are fully licensed as primary care physicians and virtually every insurance company (national and local) fully covers them as such. As we have one of the few accredited programs in the world here in WA, there are many many NDs to choose from so it is easy to find providers who take whatever insurance a person has. But it does depend on your state. If your state does not recognize naturopaths as licensed physicians, you would obviously not be able to get insurance to cover it. However, the potential upside of this is that NDs do not need to play the insurance game and many (if not most) offer sliding scale options. Depending on your situation and your interest-level, it may just be something to look into.
I will say adamantly, though, that if you are interested in looking into and maybe even making an appointment with a naturopath, be sure that they have been graduated from an accredited program in the US (preferably) or Canada. There are only 7 programs in North America that educate to the level of physician. Particularly in unlicensed states, there are people who claim the degree that have no schooling. Just to give you a heads up, you’re looking for people to say they are graduates of Bastyr University (WA), National College of Naturopathic Medicine (OR), Southwest College of Natural Medicine (AZ), University of Bridgeport (CT), or National University of Health Sciences (IL). There are two programs in Canada as well (Boucher Institute and Canadian College of NM).
And, regardless, do follow Dr. Rob’s advice to not go back unless you feel comfortable with the person. The healing RELATIONSHIP is a very powerful thing. (I know a lot of NDs who set up an initial 15 minute visit for free just to see if you get along. I think it’s a great idea and hope to do that one day.)
Yay, how enlightening to read your thoughts on this! As a pretty typical “doctors nightmare” – a professional patient with 15 years experience and a journal heavy enough to kill an unsuspecting bystander, I know that worried look that doctors often get when I enter the room. In my early days as a patient it used to make me avoid them as much as possible, now I understand why that’s not a good strategy… (thank you for saying what nobody ever told me, it took me years to guess!!)
I think my last comment got lost in here somewhere, a few weeks ago I tried to ask if I could repost your advice on my patient blog “365 pain-free days”, but the internet goblins must have gobbled up my question. I see in the previous comments you have said “Go right ahead, the more who read it the better” but I don’t know if you’ll agree to the way I’ve had to break up your advice to patients in order to fit my blog-format (one per post)… so just letting you know: If you don’t like it I’ll change it! Of course I’ve credited and backlinked every post.
Oh, and thank you for doing your best to “decrease the suckishness” that is chronic disease, I’m with you on that one!
Please do. Many have written about it and put in their comments. The creative commons license for my writing allows for reproduction as long as there is citation. I am glad you got something out of the post.
Dr. Rob, I am late in responding since I just discovered this wonderful post. You wrote this letter with wisdom, humor and raw honesty … it really resonated with me.
I am going to send the link to my doctor (who happens to be one of the good guys — after several years I finally figured out how to avoid the jerky ones and find the ones who don’t suck
).
Thanks,
Maureen
Try having a few chronic illnesses and Bipolar Disease. Doctors treat me with some modicum of respect as I go through my surgical history, my 35 years of diabetes, and meds until I get down to the Lamictal I take as a mood stabilizer. Once they hear that, the dynamic shifts, and they treat me differently.
I was at the ER a few months ago, with a Migraine that didn’t respond to any of the meds I took at home. I was lethargic, throwing up, and wanted to go asleep to escape the pain. I went through the list of my meds, and mentioned that the Lamictal was on board for Bipolar. The nurse left, and two minutes later, 2 security guards were poted outside my bed. I went in for a non-psychiatric event, was practically doubled over with pain, vomitting everywhere, and all of a sudden I was a threat to myself and others, by virtue of my well controlled, properly medicated Bipolar illness.
You have lots to complain about. I hope you find a doctor(s) that treat you as you should be treated.
All I can say is “AMEN.” So well said. SO well said. It’s like you took the words out of my mouth and put them into writing.
Wow what an amazing perspective from one whom you’d at least expect it from … The Physician. While it is true that all doctors aren’t the same but most of them make it hard to believe the very few with a heart truly care, but yes there are a few who do yet they are truly hard to find. Than you much Dr. Rob for telling the story from that side of the desk. Many times when visiting the doc after sitting for hours in severe pain you fight within yourself to be as humble and poliet as you can to be humble when most times you want to make good use of a peice of 2 by 4 and knock the heartless being out of field. Most times docs are hoping you are and depend on your ignorance but when you show up thier ignorance by your profound knowledge of your case, etc. they tend to push you off. How unfortunate but then I suppose if you ask a man/ woman a question continously they stutter at they find it easier to back off than making the further attempt to research to understand. Then you ask them if they will be willing to read a little info by way of email that will possibly help them help you make the best decisions and he promises to respond but then you relize he never intended to. As if that isn’t an insult enough then you have his nurse swearing for him that he is too busy, like heck ya tink? So is my Bank Manager and other Government Officials but they respond to my emails, etc. What I wonder …. could it be a lack of respect or is it just a lack or what??
Nevertheless, thanks for the letter Dr. Rob …… I would still like you to come sit in with me on my next doc visit.
EP
← Previous Comments
Comments on this entry are closed.
{ 18 trackbacks }