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Love this PCP; A MUST read...for all doctors and chronically ill patients

Discussion in 'ME/CFS Doctors' started by IntuneJune, Jul 22, 2010.

  1. IntuneJune

    IntuneJune Senior Member

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    A Letter to Patients With Chronic Disease
    by Rob on July 14, 2010 135 Comments and 62 Reactions

    in Being a Doctor,Best Of,Just Stuff Kind of Thingies,Personal Musings

    (+54 rating, 62 votes)
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    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:

    1.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.
    2.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.
    3.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.
    4.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.
    5.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.
    6.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.
    7.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 at http://distractible.org/

    And from June:

    The link http://distractible.org/ will take you to his blog. I could not figure out how to link directly to this entry, you must scroll down. If a more technical member can post the direct link, that would be great.
  2. JT1024

    JT1024 Senior Member

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  3. IntuneJune

    IntuneJune Senior Member

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    That't better!

    JT, thank you for the direct link.

    "How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?"

    That was the grabber line for me. To have YOUR doctor voice that, wouldn't it be wonderful.

    My former PCP retired, had gone to him for 20 years, I guess. This new PCP is SOOOO different and we don't have stable footing. He has said a few things that irritated me, but that did not occur until the fourth or fifth visit. He does believe in CSF/ME/FMS and so I hesistate running to another YET. He is following through on some tests.

    I can see myself being very aggressive......no, no, no, assertive! :innocent1:

    But maybe my attitude comes across aggressive. After all, he is playing catch up from where the former PCP left off.

    June
  4. JT1024

    JT1024 Senior Member

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    This was a very good article for me to read. I need to read it and read it again!

    I've been frustrated with doctors for so long! I work in a hospital so I deal with docs and nurses all the time there too. I know I've intimidated some because I work in the lab and at times, some doctors are truly ignorant.

    Years ago, I had to cancel a business trip and knew I was seriously sick. I had gone to a walk in clinic because it was the weekend and I was supposed to fly out Sunday night. The doc in the clinic did nothing for me. Come Monday, I saw my PCP and she also was going to do nothing. I was sick and enraged.... I asked her how she could arrive at a diagnosis without any testing. Finally, she agreed to do some testing and I was vindicated. The doc wasn't happy though because I could get the labs done faster than she could since I used to work at the large facility where she worked.

    Again, great article!
  5. IntuneJune

    IntuneJune Senior Member

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    Our attitudes

    Understandably, as CFS/ME/FMSers, we have developed edgey attitudes. We are justified. Nevertheless, these attitudes don't help us, negative energy drains....our already low energy stores.

    JT, I worked for over 30 years in a hospital, hummmm, yes, those "white coats" start to look a little gray after awhile. And on many occasions, I had to "hold the line" or be the enforcer of department regulations with physicians who were NOT happy. Then there were the nice ones, but then the not-so-nice ones.

    Well, I am not letting physicians off the hook, but

    Obiously there are some great ones out there.....at least one any way!

    June
  6. pamb

    pamb Senior Member

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    Thank you so much for sharing this. It is a very good reminder for us to try to 'walk a mile in our Dr's shoes.' On reflection, although it is very basic good advice for relationships and team work, it's something the chronically ill (and caregivers like me) can so easily forget to do. And anything that can help us out with the Doc's has got to be good.

    After 10 years of ME/CFS I know John and I are so wrapped up in our own, very different perspective on everything - and trying so hard most of the time to help other people even have a glimpse of our perspective - that we are definitely guilty of forgetting to think of the other person's issues. Heck, a lot of the time we are trying hard NOT to think of the other person's perspective. The reminders of 'another life' are just too painful.

    I am so grateful we have found a sympathetic GP or PCP here in France. He is near retirement and is very careful to not do anything to rock the boat and risk his position, but at the same time he seems to understand our situation and does everything he can within the system to provide support and alleviate symptoms. It will be interesting to see what happens when XMRV is 'official' and I ask him to research if/where there are specialists in France willing to deal with it. I'm really hoping the current HIV Doc's (surely there must be quite a few here?) will be drafted to take on XAND patient care.
  7. muffin

    muffin Senior Member

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    Really good article by an understanding physician

    I too loved the sentence: "How do you answer the question, how do you feel? when youve forgotten what normal feels like?" He nailed that one on the head since I never know how to answer it after all these years. What does normal feel like anyway?

    This doctor also nailed it in so many ways. I always had problems with male doctors and could not understand why. Well, my husband finally started going with me to the doctors and saw what the issue was: I was trying to establish the agenda and assumed control over the meeting. Of course this would irritate a doctor. I grabbed control from them. My husband was correct. When I stopped trying to control how the appointment went, the situations got a bit better for me. I still bring in my list of questions and my own health history - blows them away when they see those sheets of paper coming out, but I'm better behaved now.

    And he was dead on about us not having the Doctor-God complex. I never had it since my father was a surgeon (and then got FM and got out of surgery) and I saw what doctors were really like - normal people like the rest of us. I also have a tad of a problem with authority figures - it's that rebellious streak at it again.

    Anway, really good article. Wish I could go to this doctor. He seems to really understand us and what we go through. He also makes very worthwhile points on understanding us from the doctor's point of view and that too is super critical.
  8. SickOfSickness

    SickOfSickness Senior Member

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    Thanks for posting this June.
    Thank you Dr. Rob.
  9. shrewsbury

    shrewsbury member

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    Thanks for this June.
  10. BEG

    BEG Senior Member

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    June, This explains so much to me. I could especially relate to the fact that we often know more about our disease than the physician.

    As for asking how we are doing, I wish no one asked me that question. I don't know what to say. I am never "fine," but who wants to hear a litany of complaints?

    Thanks for posting this.
  11. IntuneJune

    IntuneJune Senior Member

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    Brown-eyed Girl stated:

    "As for asking how we are doing, I wish no one asked me that question. I don't know what to say. I am never "fine," but who wants to hear a litany of complaints?

    Thanks for posting this."



    I don't know what to say either, having been at this for 30 years, I have said and gone through it all it seems. Right now I am on a cycle of saying when asked how I am, "Well, I am vertical, so it must be a good day." So I have given an answer without actually saying how I really am.

    June
  12. Victoria

    Victoria Senior Member

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    It's not just physicians that are hard to answer when they ask how you are.

    When you answer "fine thankyou" to anyone asking this question, they treat you like a normal healthy person & then get agressive or annoyed when you can't behave like a "fine" person.

    When you answer "not so good", they don't want to hear a litany of complaints either.

    So how DO you answer.

    PS And thankyou to June for posting this article.
  13. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I don't usually say fine. I try to say alright, but know that I write this, all is not right! I am not going to say good, for who knows how long! If ever again?!

    Right, I had an appt with my PCP a few weeks ago, and she wanted to get all caught up, yada, yada, she does not understand this illness, but I needed her signature on some paperwork, otherwise I only visit her when I have a "regular" cold/sickness! Her copays are as much as my specialist now, so why waste me time!

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