I guess I fall under the difficult patient catagory! I am in their face, if they start straying off into dogma driven medicine. i bring lots of photos, articles, and study the subject before the appointment. If the doctor is authoratative and will not listen to me, I fire him.
We have to remember; it is not about them, it is about us and our condition, they work for us.
Rant over...

for a few seconds or a minute, I attempt to be something other than the sick patient when I am in for appointments and now and then I treat the doctor as something other than a god or a doctor. this method works for me. the doctors like it also. I know you are all going to think I am batty, but I humanize the practitioner just like I want to be humanized.

but then the rheumatologist I have sits down and looks at me (not the god damn laptop) and we talk eye to eye. intently.

I realize this is probably a rarity.

the specialists have been touch and go with the god-ism of their collective ego. (especially the chairs at the teaching hospitals that I have had). no comment there.

i see the cup as over flowing. what my rheumatologist has taught me is that some doctors like an intelligent well informed patient partner. I don't expect to get that in every practitioner. it's better than nothing.

depot

I have learned from this group to be proactive in my health care. So this is what I try to do. Doctors are people too and they do make mistakes. I remember my daughter-in-law telling the doctor that my 5 day old grandson had a major problem and he needed to look into it further. She did not know at the time that she was talking to a high ranking officer (my son was in the Air Force at the time). Come to find out my grandson had a life threatening birth defect and had major surgery the very next day at a Children's Hospital. The next time she saw him, he apologized and thanked her for being so insistent. So as I see it, if a doctor gets mad because I am asking questions, it's time to get a new doc. My rheumy is the best and yes, he looks me in the eye and listens to everything I tell him. Sorry to be so long winded. Have a great day!

Really????? I wonder how many people were in the population of those studied. Not many, would be my guess.

I have been talking about "collaborative relationships" between doctors and patients for about 10 years - maybe longer.

I learned a long time ago that no one is going to take care of my health like me. Therefore, I'm compelled to be knowledgeable and to get my money's worth at doctors' appointments.

"Difficult patient"? The question should be: "Is your DOCTOR difficult?" And if you answered yes, then fire him/her.

I am so glad I found this group. I am currently being challenged with this issue. My RA is wildly uncontrolled and I ended up on an unexpected (unwanted) leave of absence from my job due to the inability to control my disease. In these past few months I have become more engaged, have tried to ask questions, bring articles, request a different approach and I am currently being labeled 'difficult'. I struggle with this. How do you simultaneously get things done while remaining in the good graces of the physician's office? I have tried to explain to my physician that this is not a reflection of my confidence in her but rather my life is rapidly going down the tubes and that has created some panic and need for me to really become more engaged.
I have an appointment on Thursday and would love to hear any advice on how to proceed.

Very sad when asking questions and being an informed consumer can irritate some doctors. There are some who are easily offended. Then they label you in their charts, which influences any new doctors, when they request your records.

It makes me thankful for the good doctors who can do their job without becoming threatened by an educated consumer.

Is it possible that you could get an appointment with another Rheumatologist, so you could least get a 2nd opinion. It probably will take a while to get in, so you could continue with your current Rheum until you find someone that is a better fit for you.

For me, not being able to ask questions, not being able to participate in my treatment would not be acceptable. My Drs post all reports from office visits online for me to read. All bloodwork is posted online, so I can read it. Physical therapy (I had shoulder surgery in October) notes are posted, for me to read. If the Rheumatologist suggests a drug, and why - if I say no, he will accept it in a positive way, and tell me if I change my mind, let him know. Admittedly, I do change my mind 98% of the time..

On my first visit to my Rheum, he told me he wanted his patients to ask questions, to actively participate in treatment. He gave me the names of 2 websites (WebMD, Mayo Clinic) to get information. I assumed all Rheumatologists did the same thing, and have found that was not always the case. I hope you can find someone that really wants to work together with you.

Sadly, I was not proactive the first years of my disease. There was no internet, no support groups, and I just kept getting brushed off, despite the obvious joint flares, because I was sero-negative.

When I finally got a diagnosis after 2 years, I was undermedicated for 5 years. I thought the rheumatologist would see the pain I was in and ask me, or add something. He never did. I guess he assumed if I wasn't complaining, nothing was wrong.

I am pretty agressive in most things,, but I just held back where my health was concerned, and I have the deformities to show for it. When Vioxx and Celebrex were taken off the market,, I finally told him I couldn't stand the pain, and he put me on a biologic - just like that! And it worked! I could have had that years earlier - but I guess I thought he would ask.

So far from being difficult, I was far too compliant. I always took meds as prescribed, and if that meant suffering and pain, well, the doctor knew best. I guess he must have loved me!

So many years later, I moved and I have a new rheumatologist. He is much younger, and much more personally involved. He tests all my joints every visit. I don't remember the last time my former RD even looked at my joints - maybe never??

He puts up with me being non compliant, esp. with prednsione. And he is listening to my demands to go back on Kineret, which is the only biologic that actually worked for me with a DMARD. Even if it is not even listed as a treatment in this province - he is willing to look into it - which is about all I can ask, at this point.

Because of my bad experiences with this disease and treatment, I always urge newbies to be assertive, to be informed and not to take "NO" for an answer. We may not know everything about medicine, but we know our bodies. Listen to them and doctor shop - what more can I say!?

I'd like to add that ESPECIALLY in the beginning [of being an RA patient] we're exhausted and it's a real challenge to even think straight in the office.

A week before each appointment you should start creating a list of questions to be asked during the appointment. There was a time when I had so many that my doctor just took my list and went through each one.

YOU are your own best advocate.

And if you don't feel you can ask, bring along a relative or friend and have them ask questions that you've written down.

Knowledge is power.

As for being labeled "difficult" - well, I could care less.

Ditto, early treatment, I wish I would have trusted my doctor and started Biologics sooner. My life would be a lot easier, today. I agree, make a list of questions, don't be intimidated, get your questions answered. And I think it's wise to be concise and professional unless, something starts going way wrong. Listen to your instincts. A good Reumatologist is, or any good doctor, is a blessing. IMHO

overall I have been pleased.

i love the way the surgeons want to pick up the knife for the billable cut while you are still consulting....money money money money make me smile.

and the way the pain management folks want to run through the hall with their cortisone needle jabbing for the billable hours at me...ha ha

but other than that, business being what it is, business, I have been pleased and not nearly as jaded and irritated and angry as one would think I would be after all these years of treatment. i expect the best and I get it some of the time.

I really like being an advocate for others now and then too you know? and going to my friend's appointments or tests or surgical day care pick ups if I can.

i always take notes for them. I think that is fun. It's fun because it's amazing how people think they comport themselves. when I ask my bes localt RA buddy friend what she "thinks" she has asked the rheumatologist and learned after some appointments and together we compare it against the notes I have - it doesn't add up. Most of the time it is because she is not listening. I hate to break that to her, but that's her scene.

If you live alone, LIke I do, and you are not dragging your entire family to your appointments, then see if you can get a buddy once a year (trader her or him something in return like a dinner out) to go to a rheumie or a specialist appointment.

depot

Thanks for posting, so true. I too make a bullet list to bring symptoms or concerns to each appointment so I don't forget while I'm there. Once when a rheumy looked at the list I pulled from my purse I assured her, don't be worried, its just a reminder note so I don't forget anything and have to contact you later. Too bad I had to put HER at ease but she did look relieved. She came to realize I am focused, serious about being involved in treatment and improving my condition. Unfortunately on a slightly different angle her bias showed, I gained quite a bit of weight once RA showed its ugly head and that's what she saw first.
The next one was a teaching hospital-what a cluster fowl up. That Dr. lost prior records I brought in twice plus her fellow dictated an office visit that barely resembled truth and I had to ask for a correction. I knew bringing that to her could be the beginning of the end but I'm not going to tolerate having my records misstated. It was the end.
My approach in general is to find out what I can about an issue and let them know I'm looking to them as the expert. I've had a couple of Drs thank me for that, keeping in mind the decision is ultimately mine. Its not easy changing Drs and I feel for those that don't have many choices.

I'm thinking that the people in the article were probably not chronically ill. All of us have learned some hard-won lessons, I think all of us have dealt with one or two doctors along the way who were dismissive, inept, or just old-fashioned horses' asses. It gives me an appreciation of the good ones!

I can often tell a few minutes in. More that one has been uncomfortable with the fact that I know the names of the drugs I take, and can spell the names of all the ones I am allergic to. (Just did that for your high-school-dropout medical assistant, Chester.) I don't know why that puts the authoritarian, insecure ones off, but it does.

Depot and Beechfeet, I'm with you about teaching hospitals. Huge egos, major snafus, and stupid expensive to boot.

Very interesting comments, RA Sally. I agree with a good number of them, although my personal experience with a number of specialists over the last 20+ years is evidence that collaborative relationships are very much alive and well.

I view a doctor/patient relationship as I do any business relationship. Im paying for a service. Its up to me to get the most for my dollar. Because I dont have an MD after my name, I pay the physician to guide me in the diagnostics and my treatment options. At the end of the day, the choice is mine [and who really cares how Im labeled, or if I am at all?].

Ive run into physicians who believe their word is gospel. There was the pulmonologist who said, You will do as I say, to which I replied, Over my dead body. Youre fired. And no, it did not affect my care with the following pulmonologist in the same town, in the same hospital. In fact, when I went to the second pulmonologist I told him straight up that its a collaborative relationship or none at all. [FWIW, Ive found that the younger doctors are more open to this.]

I understand my diseases well and tend to keep up on current news related to them. [No, I do not have a somatoform disorder such as hypochondriasis.] Some of my doctors have expressed that having a knowledgeable patient makes their jobs easier. Yes, I have brought in medical articles from credible medical journals and asked them if theyve read them. Only once did a doctor say he had not and thanked me for it. Of course, there were some who told me I shouldnt research on the internet. Yes, they were fired. [Sometimes youve got to kiss a lot of frogs before you find a prince.]

I still wonder how many were in the study Alto cited, as well as other demographics. Anyone know?

It is important to choose your healthcare providers wisely. Its your health at your cost. So get the most out of it. Be your own best advocate.

My doctor encourages me doing my research. She will answer any questions I have and when I tell her what I have found she is pleased that I am taking that initiative to get more information since our time together is short. When I was first diagnosed, I read everything about it that I could before my first appointment with her. Then I started doing research on diet and exercise to help. she loved it. I have changed the way I eat considerably and am meeting with a personal trainer next weekend to get started on a workout routine. I told the trainer about my diagnosis and that my goal was to lose weight and strengthen my muscles.

Ginny