A Letter to Patients With Chronic Disease

A Letter to Patients With Chronic Disease by Dr. Rob Lamberts

This is a re-post of a wonderful essay from a few years ago that delves into the reasons for the lack of understanding and empathy between doctors and their patients with chronic illness.

Dr. Lamerts gives good advice for how we pain patients can approach our doctors to get them on our side, instead of alienating them.

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?

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.

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.

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.

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.

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.

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.

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.
  • 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.
  • 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.
  • Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.
  • 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.
  • 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.
  • Forgive us – Sometimes I forget about important things in my patients’ lives.
  • 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

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10 thoughts on “A Letter to Patients With Chronic Disease

  1. leejcaroll

    His suggestions I have often tried to diplomatically say in some chronic pain groups. The anger over the pain and often mistreatment gives some people the feeling they have the right to be disrespectful, angry etc, even to a new doctor and then complain they don’t understand why the doctors treat them the way they do.
    On the other hand I have seen a few doctors whose ignorance was taken out on me, it’s psychological – despite the cause being proven neurosurgically and repeatedly, the pain isn’t as bad as you say – despite trigeminal neuralgia being the first pain disorder to be known as the “suicide disease” and the “worst pain known to man” (I have seen this used now also for CRPS which to me sounds somewhat like trigeminal neuralgia of the body), or just ignoring what I say and “telling” me what I feel, why it is not what I say it is.
    Both sides of the coin, or hand as it were, have to look at how they behave and speak.
    Each of us has a role in how we are treated.

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    1. Zyp Czyk Post author

      Well said!

      I agree that it’s usually a two-sided situation, though there are those docs whose minds are firmly shut – and I’m sure a few patients must be that way too. But as soon as the slightest disbelief or mistrust rears its ugly head, the situation can deteriorate quickly.

      We need a cooperative spirit in the exam room, not the antagonism that’s been initiated and inflamed by the anti-opioid fanatics and media. Doctors used to work WITH patients, but now we’ve been cast as adversaries.

      The damage wrought by the “war on pain patients” may never be undone.

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    2. Payne Hertz

      I have been involved with chronic pain support groups for over 20 years and I have never met anyone who felt they have a right to be disrespectful to doctors. I am quite sure that even people who are habitually disrespectful to others have the good sense to keep it under wraps when dealing with someone who has the power to deny them pain relief.

      Doctors not only feel they have a right to be disrespectful to us but also to deny us treatment for our pain for any or no reason at all. They even brag about it openly on their blogs.

      There is absolutely no moral equivalence whatsoever between a patient being rude or annoying to a doctor and the doctor responding by denying treatment to that person. The former is a mild nuisance, the latter the behavior of a sociopath.

      There is nothing patients can or should do that can reliably appease or placate a sociopath or narcissist. These people need to be drummed out of the system, and we need to have the right to treat our pain without having to deal with them.

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  2. Dave

    Dr Bob-like other doctors is quick to explain away his poor behavior-and that doesnt make it right. It is time for doctors to stop excusing themselves and offer solutions, instead.

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  3. Payne Hertz

    It’s funny, but when I read this piece years ago my immediate impression was that this is the closest I have yet come to a doctor expressing understanding of what it is like to deal with pain.. Unfortunately, the warm glow resulting from this barely lasted more than a few paragraphs, as Dr Lamberts quickly devolves into putting the onus on patients for repairing if not causing the broken relationship between doctors and patients.

    I have to wonder why he didn’t write this for his fellow doctors? They are the ones who need to be told to be respectful, not us. I have never in my life been disrespectful to any doctor or their staff. Yet I have never been treated anywhere else with such casual cruelty, indifference and outright sociopathic behavior as I have encountered from doctors.

    None of the factors Lamberts lists here should have any impact at all in getting your pain treated if you are dealing with a civilized human being. Instead we get a list of trivial complaints that shouldn’t bother anyone but a hypersensitive narcissist who gets vindictive if you show any indication he is not a god in your eyes nor are you willing to venerate him as such. Mere “respect” is not enough for someone who demands the suppression of any behavior that might threaten his delicate ego.

    As always, someone other than doctors is to blame for everything that is wrong in medicine. See this article appropriately entitled “It’s Not Our Fault” for more of the same:

    http://more-distractible.org/musings/2008/09/09/its-not-our-fault

    This whole idea that people with pain need to adapt some kind of psychological strategy to get treatment for their pain is disturbed.

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    1. Dave

      Medicine has primitive roots, so to speak. And though we might have some knowledge of the problems-its limited knowledge- for it is clear people and doctors believe medicine can be fixed of behaving badly toward their clientele,rather easily. A course on communication or a lectute on not disrespecting “patients”- yeah right. Of course it requires fundamental changes-and medicine is not up to acknowledging or accomplishing that. Moreover “patients” need to change too- doctors are not mommies, Gods,etc. The truth is that neeither side is ready or willing to makereal changes.

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      1. Payne Hertz

        I have found that many people are threatened by any criticism directed against the medical profession, even those who have experienced its abuses first hand. We have been conditioned from birth to believe if we ever get broken, the doctor will fix us, and that doctors are the epitome of compassion and “care” in our society. For many people this belief is their last hope–someday they will find the right doctor and he will have the answer. To criticize doctors is to challenge hope itself.

        As you say medicine has primitive roots, so they have been in the game for centuries and know which levers they have to pull to get the mass of people to have faith in the system. When reality becomes too overwhelming to ignore, they are adept at shifting the blame for every failure and abuse onto some convenient scapegoat, often patients themselves. The internet has helped to expose the realities behind this carefully constructed facade, but many are still not ready to swallow the red pill and see the system for what it is.

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