Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Really Awesome Article - made me feel better

A Letter to Patients With Chronic Disease
by ROB on JULY 14, 2010 · 466 COMMENTS
in BEING A DOCTOR, BEST OF, JUST STUFF KIND OF THINGIES, PERSONAL MUSINGS
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



http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

I just read this on one of my fibro sites. Thank's. Good to see you pop in! How is the family?

That was nice, my doctors have been very caring and understanding. I can tell they don't have all the answers but are really trying to help with the info they have been given.

Really awesome post! thanks!

Thank you, Dr. Rob. Your open letter is a gift. One that I will reopen again and again. And share with others outside our forum.

Hi Pea! We're ok . . . we just made an offer on a fixer-upper in the town we want to live in . . . will know Monday if they accept or decline. Family has been great! The heat and drought are getting us down, there hasn't been even a trace of precipitation since December, and we got to watch the flames as 27,000 acres of our mountain burned, but thank goodness, no one was hurt and the cattle got out safely. It didn't take any homes, all national forest. I have almost no garden this year the only plants that are producing are the cherry tomatoes and chile. No irrigation this year, the river has gone dry. Local farmers have row covers over the chile fields - that's when you know it's bad!
So absurd to think that so many places are flooding right now.

What a great article. We not only have to manage our disease but have to know how to manage our doctors also. Glad to see your post. Sorry to hear about the drought though. Good luck with the house...you guys could really use a break.

I know there have been a few times when a doctor or PT have wanted to throw in the towel, and I've found myself giving them a pep talk, reminding them that though slow, we were in fact making progress.

I find I need a doctor "stronger" than me; someone just as tenacious and unwilling to give up. Someone who never seems to run out of new ideas to try. Etc.

I read this post first two days ago, then I wanted to take a little time and read it again, before making a post.

This doctor, if indeed it is verified it is written by a real doctor(?) -has some VERY valid points and an understanding of patients that suffer with cronic diseases and hard-to-dx conditions, that is probably close to as good as it gets.


However....even as good the first part of his letter is, and probably unconciously almost perfectly designed to dazzle us....he falls short in the conclusion of his advices. Don't get me wrong, his advices are spot on for how we should deal with doctors to get the best aid. But they accept and deal with the problem of doctors without ever dealing with how doctors should be made to change their ways, and how the education of doctors is sadly shortcoming.


For a doctor (and I have 2 friends that are) there are two main types of "problem patients". They are well trained to deal with patients with serious conditions, dying patients, patients that are a little too fond of a doctor visit, etc. But they have no constructive tools to deal with "psych patients" and "symptom bombers". (one of my friend who is a doctors terms).


Well my mind works differently. I can make sense of fairly complex problems of various natures, but I ALWAYS look for simpler solutions. There is no situation where simpler cannot be better.

And the problem really is very simple, although the solution may not be. We cannot accept that a patient with a ton of symptoms is degraded to a point where he has to "sort through his symptoms" before presenting them to the doctor. If there is more symptoms, there is more clues to what ails him or her. Not letting the doctor know those symtoms, kills any chance he has at a real solution. If a dcotor was trained to ask and encourage his patient to fill out a form where he listed possible symptoms in three coloumns (physical, neurological, psychological) it would make it easier for that doctor to do the following:

First, decide wich symptoms are not. (what listed that is perfectly normal in healthy individuals.)

Look for a pattern.

Check if anything needs urgent attention.

Decide wich symptoms are severe enough to diminish quality of life, and needs relief in addition to examination.

Order tests and examinations based on "real symptoms" presented.

Check if everything listed can be psychological. (for example blood in stool will never be psychological)

And finally, never ever ever consider that a patient is a psych case, before that patient is properly examined with appropriate tests. Are tests expensive? -that may well be. -Is it cheaper for the society if that patient is lead back to health? -Always.



So you see, the fact that there is a mentality among the medical profession, that there is "so many patients what complain endlessly about "common pains", and that there are "so many psych and anxiety patients that invent symptoms" does not excuse stupidity. Its common sense that most people DO NOT WANT TO BE SICK. We shouldnt have to walk on rubbber soles around doctors, just because they do not realise what most of us have known a long long time; Stop telling us how we are supposed to be sick, because Doctors do not understand the body fully yet, they just think they do.

-gilth-