[acb-diabetics] a letter from a chronic pain doctor

[Patricia LaFrance-Wolf]

A note from the Editrix of ChronicBabe.com: 

Doctor Rob, the writer behind 'Musings of a Distractible Mind' and one of 

our fave doc bloggers, posted this open letter earlier today. It's
incredibly 

powerful, and he's encouraging lots of conversation. So read it, and then 

head over to his blog to post a comment...and hit up our Forum to have more 

chat about what I'm sure will be a conversation-inspiring letter. Thanks, 

Doc, for letting me reprint this today!

------------------------------------------------

 

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.

 

http://www.chronicbabe.com/articles/846/

_______________________________________________

 

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http://www.sticklers.org/list/

 

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