I found this very interesting - from a doc to patients with chronic disease (which certainly applies to anyone on this site).

I have been very fortunate because my primary care physician knows me very well having been my doc for about 20 years - He can take a look at me and know how I'm doing. He is also willing to admit he doesn't know everything and is willing to do research and has been know to call me at home at 10:00 pm to discuss his research with me. I also have a great neuro who isn't threatened when I want to discuss some new treatment and is also willing to research something he doesn't have a lot of knowledge about and give me a call at home. They also work together very well to make sure I get the care I need.

But - I know a lot of you have major problems with your docs so I thought it might be useful to see it from the docs point of view. What do you think?

http://more-distractible.org/musings...hronic-disease

Thanks, Juanitad.

At least there's a doctor out there thinking about how they're coming across!

While I understand everything he's saying, the part I have a problem with is the ego-centered nonsense about how our chronic illnesses adversely affect doctors.

Why? It shows an utter lack of their ability to change how they respond to and feel about CI patients. And, possibly, an inability to understand that we don't need them to "fix" us.

All I need from my neurologist is for him to listen, respond, interact respectfully, come up with solutions when possible, and be empathetic when there aren't solutions. That alone is what makes a good doctor.

And what makes a good patient is the same; plus having realistic expectations of what a doctor can or can't do for us.

What about end of life doctoring? Physicians can't "fix" death either. Does that mean that the work they do before someone dies is not valuable? No!

So what is in the way of them being able to see us and realize that it's okay that there is no "end point" on which to base THEIR value or success, in my opinion, is simply their own personal desire to be perfect or to say (to themselves or anyone else), "Look what I've done!"

It's that type of ego response that does not have a place in doctoring. If they could realize that medical help is a spectrum that is different for each patient, and not a definitive end point, maybe we'd all get better doctoring—especially if doctors saw us as a "team" and not as a managerial relationship!

Maybe he/they should spend some time with Eastern medicine practitioners!

Annie

I am so sorry... for all those doctors I have scared.... I just don't do Ego Massaging very well especially when I KNOW that I have a problem.

I have always asked for the doctors to work with me, given them some idea what I think the problem is, and been open for alternative diagnosis.

But if they suggest something that simply does not fit the facts, then I am going to say so. After all it is my life that there failure is going to screw up.

Give me a doctor who listens and maybe argues with me... fine. But not one who still thinks that he is God and should be worshipped.

I read this letter a couple of days ago (and browsed some of the comments) and it's been lurking around my brain since.
I had to laugh at his suggestion to avoid ED's after my own experiences. I now add General Surgeons to the list of people to avoid. When I was about to go under anesthesia last Oct for an emergency appendectomy I jokingly said to the anethestist "Can you get him to fix my knee while I'm under" His swift and contemptuous reply was "You don't want a general surgeon working on your knee!" This isn't the reason GS's are on my list - that's for the way he completely mishandled managing my autoimmune condition and put my life at risk.
There is a quote I learned as a child which I now apply to dealing with the medical profession " Diplomacy is the art of letting others have your way" (unless I'm in a crisis state - then all bets are off and survival instinct kicks in). It may sound like a very self-serving quote but when you are fighting a chronic illness you don't also need the stress of fighting a disfunctional medical system. It's something I try to keep in mind when I plan how and what I need to say to resolve whatever issue needs taking care of. Does it work? Most of the time yes - but there are definitely those doctors who, for whatever reason; arrogance, greed, incompetence, negligence, all the planning in the world won't get the necessary results. These doctors will only get to see me once.
That being said there is an onus on the patient to manage their interaction with medical professionals so as to not waste resources.

You really do have to go to the right specialist. When I first started having my severe breathing issues, my cardiologist said it was due to heart failure. He said lack of sleep was making my heart condition worse, so he put me on ambien.

As a result, I almost died.

I had so many neurological issues, and nobody would refer me to a neurologist.