I read this blog post and was just slack-jawed. A doctor's point of view, raw and honest. Please read this, and you may have a little bit more understanding of my life.
Here is the originial link:
http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/
And please read this page too:
http://doctor-rob.org/
THIS is a man who KNOWS what it means to be a doctor.
Anyway, here is the article:
A Letter to Patients With Chronic Disease
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
