This is something that a lot of rheumys seem to get taught arthritis patients do - then they treat everyone as though they are doing it, even if its as plain as the nose on their face you aren’t. (I thought of this post because of some minimizing I’d just done on another post… Which seems characteristic of many on this board, but I digress).
How many people have encountered their Rheumy treat them like this when all they were trying to do was have a rational discussion of the impact of their disease on their life?
How many actually minimize it much of the time?
And how many look back and say “yes, I was being irrational and it really wasn’t that bad”?
I’ll go first. My Rhuemy treated me like a catastrophiser. He was wrong. Mostly in the context that he thought I could take a few panadol and get by doing what I was doing. Though I’m sure i would have learnt to enjoy aspects of my life had I not found an adequate treatment, all the things I was concerned about (loss of that specific career, loss of my specific house, loss of a lot of the things I love doing, like horseriding) would have come true. I mean, it takes three months to see a Rheumy in Australia - did he not consider I’d tried panadol and every other possible drug, supplement, diet, exercise that I possibly could by the time I got to him?
Anyway, I guess persistence paid off in my case (as did having my husband at the first consult to provide what my Rheumy clearly trusted as a much more rational account - was I miffed? You bet)
I have a different experience. My rheumatologist doesn't treat ME as a catastrophizer but when we talk about disease progression he wants to be sure that I don't think that HE is the one catastrophizing! For instance I have started to get a lot more looseness in my finger joints which has increased my pain (my finger tips wobble and click a lot more). When talking about this and on palpating my joints he told me he could feel bone spurs and that I ought to be careful weeding and doing anything with sharp lateral movements so I don't break my finger tips. He then proceeded to reassure me that it wasn't that bad and that things were progressing slowly and that blah blah blah.
So I wonder if they take this approach to stop us from panicking? 'Cos we all know stress is bad for us!!
Jane- I don't get anything like that at all, in terms of warnings. But I will say, you might want to think about trying ring splints. I do all of my weeding and whatnot with the splints on, otherwise it's all very painful then and for days.
I'm blessed to have a rheumy who knows that if I mention something is "bothering me", it's probably off the pain scale and a normal person wouldn't be as calm about it as I am. I downplay my symptoms/pain most of the time in my everyday life, so telling my rheumy like it is doesn't come easily. *He* is the one saying to me, "How are you still walking?" or "How can you be so happy while in so much pain?" LOL
This is such a fascinating topic, and I think it's responsible for much of the disconnect between doctors and patients, I've wondered if some of it isn't a defense mechanism rheumatologists use to distance themselves from the fact that so many of their patients don't do very well over time. Rather than accepting the fact that many of their patients have anywhere from incomplete to undetectable responses to treatment, maybe it is easier to just write them off as "catastrophizers".
Here's what I wish my doctors would realize: I don't want to be here in your office. I can't ever find anything worthwhile to read in the stack of 2008 Golf Digest and People magazines while I sit in your waiting room for an hour +. Most of the so-called "art" on your walls is horrid. I've had to leave work, often at the worst time. This is going to cost me big bucks. You're probably not going to have much of an answer for me anyway. So when you imply that I'm catastrophizing or seeking attention it just ticks me off. I don't go to the doctor unless I can see oil leaking out of the crankcase, flames are shooting out of the roof, AND the wheels are about to fly off. THEN, and only then, I'll wait a week to see if things improve, then call for an appointment.
Neither my first or third rheumy did this, but boy did the middle one! It was beyond frustrating and all the way to crazy-making. He refused to believe I had an actual psoriasis diagnosis, and his treatment suggestion was to try going off all my meds "to see what happens". I also had a hand surgeon that did this after a supposedly routine surgery went bad. 45-degree contraction of a couple of fingers and so many nodules that my palm looked like bubble wrap, all in two months time. His explanation: I wasn't working hard enough in PT.
I think my rheumy is definitely disconnected, he goes through the steps and that's it. I think he listens but doesn't really hear me. If that makes any sense. On the other hand when I go to the PsA clinic they seem to be more understanding but I think it's because they understand the disease better in general.
They did an ultrasound on my hands and saw first hand how bad the inflammation was/is and how it is just everywhere. My regular rheumy doesn't see this....and I'm not sure he cares.