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And Doctors View Point On Chronic Illness

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I'm not sure if I want to kiss this doc because he realizes and feels bad about his limitations or punch him out because nowhere does he say he does not charge patients he can't help.

I'm so sick of docs who don't understand. But I'm also sick of docs that give it a good try but can offer nothing to help but sympathy and still charge me, mightily, for that sympathy. I'd like it if he could understand that some patients really resent spending all their money in an effort to get better and getting no real results -- often going broke -- and maybe, just maybe, not charging those that they sympathise with but cannot help.


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I've felt that with my doctor that I come on too strong for her and she dislikes it and that I might get more help from her if I made her feel like she was in charge and I was actually looking to her for answers instead of throwing out things that I know she can't answer. I think when I do that we just both leave the visit somewhat frustrated with no real meaning or progress to the visit.

Also I like Dr. Rob's effort to bridge the gap but I think I am usually more impressed by health care providers that have actually suffered with disease.

As a nurse in long term health care for 20 years I was so ignorant and nieve to people's pain, weakness, frailty for all that time. I knew it was there. It's not that I denied it I didn't understand it.

It wasn't my job too. I walked in tried to say something cheerful did my assessment and yes tried to take whatever intervention to relieve suffering but I was so far removed with what that person was feeling. I was in my own healthy world where I had no clue what those things felt like and what impact they have on the body. I would get compassion yes and my heart would sink when I saw certain things but it was from a different standpoint of just watching a person suffer rather than having any clue what it felt like.

What could I have done different maybe not much.

Except I just would have been a little more understanding of how difficult it was.

Maybe everyone is not like me. I get that.

But I had no clue whatsoever.

And many times now that's how I see my own health care providers. They are living their lives as they should in their own reality that does not understand mine.

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Lieze - I think it shows courage and honor to recognize that about your former self. ;)

If anyone wants a very good (but hard to read, kind of dry) book about learning how to have conversations with anyone, in a way that helps you get what you are looking for, you might try, "Crucial Conversations". It is marketed toward business managers but it really applies to anyone. It teaches you how to relate to people during a conversation that helps the other person develop trust with you and therefore want to help you. (Not to be confused with "Crucial Confrontations" which is by the same author and is a somewhat more advanced skill version of having a non-confrontational conversation.) This doctor's letter implies some of the basics of this skill set....understanding who we're talking to and where their coming from (whether we like it or not) can be used to our advantage if we choose the right approach.

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I commend this doctor for contributing to this dialogue - these are difficult, yet important, conversations to have. I especially liked the discussions about knowledge and collaboration, which works both ways. I am curious about this following perspective raised by Dr. Rob …

“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.”

As someone living with a chronic condition, I feel that this viewpoint adds to my frustration. I will likely never be ‘fixed’ in the traditional medical sense. However, my quality of life does not necessarily equate to my vital signs. Even on some of my worst days where my HR is through the roof, my BP is bottoming out and I have hit the floor several times, I can still have brief moments of happiness, humor, and humility. Likewise, on days when my vitals are stable, I can feel alone and hopeless. I want to work with a physician who understands this; that health is more than the absence of disease (WHO). A physician – through various interventions that impact my physical and psychosocial being - can impact my quality of life even though he or she cannot rid me of my dysuatonomia. Yes, it is extremely important that my physician is highly knowledgeable from a medical perspective. However, it is equally important to me that he or she is empathetic, a skilled listener, flexible, personable, persistent and open-minded.

Just my two cents for today :)

p.s. Re: Dr. Rob's point of "we want the miraculous..." trust me, so do I. So if you find the magic wand please send it my way. However, until this comes to fruition please refer to my points above!

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Glad this was posted. Getting ready to go see the cardiologist this week. I'm just hoping he has a new medication to try.

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