Sunday, June 2, 2013

A Wonderful Article about "Complicated" Chronically Ill Patients & Doctors Feelings about us...

Here is the first part of the article and the link will take you to the entire page:
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?
  Letter to Patients With Chronic Disease

This is MY response to the posting in FB":

This is an incredible article! My husband and I have spoken about this many times. Our doctors are "humans"... and we are extremely complicated types of patients. There is so much that can be wrong with us. Plus I do go in often almost feeling as if I "know more" about my illnesses than the doctor does. So, I try not to let that show up because I don't want to offend the doctor I am with. Now my PCP loves the fact I know a great deal. But, he is young. He started seeing me when he first opened his practice, and he is also the one that really "diagnosed" the official Lupus diagnosis. So, he has been my doctor for long enough, he accepts me as I am, and understands me for the most part. I always try to keep all of my doctors informed. If I have something like surgery, or special tests and so forth, I make sure my PCP, RHEUMY and Pain Dr. All get those documents. At least they are in my file. So, they know that before they walk into the room with me hopefully if they have had time to review my file for a few moments. But, this is really incredible for a doctor to come out and tell us these things... I wondered why a couple of my doctors, especially SURGEONS acted almost Pissed at me??? But even my PCP said it is because surgeons NEVER want to be wrong... thus they certainly do not want a patient acting as if they know anything. I had that happen with my last shoulder and neck surgeon. I went in with all of the knowledge of what I felt was wrong and what type of surgery I needed. Mostly because my other doctor had already done surgery on the shoulder twice, and told me it was a mess and what I needed done. Well, that hit this doctor ALL WRONG! He acted pissed at me, and basically told me I was stupid. I even decided he was so rude I would not go back. But, he did have the knowledge needed to do the highly specialized type of "reverse" shoulder replacement I needed. Not many doctors know the procedure... so I did go back, and then I had other issues that happen to caused pain in that same shoulder blade. Well OMG I went back and he just about blew a fuse thinking I may be saying he did the surgery wrong, or something was wrong with the surgery...hell I was not at all.. I just knew something else was wrong. He really turned into a jackass again, and finally "we" with tests etc... found out the issues were with my neck... so he "fixed" my neck. After all was said and done... he basically "admitted" I was right. That what I said about my shoulder and my neck were both pretty right on... well I knew so much already about other issues, and years of surgeries, and doctors, and so much research... of course I felt like I kind of had lots of knowledge about what was wrong... but I never wanted for him to think I was being rude and trying to tell him he was wrong. Now I understand why he acted as he did. But, at first I just thought he was a jackass with no bedside manner... again thanks this is a great article...

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