I left my rheumatologist’s office about an hour ago, and am still trying to analyse my feelings of disappointment.
On paper she did nothing wrong. She was polite. She was professional. She had my records. She answered my questions. And I walked out of there feeling like I’d just spoken to the system, not a person.
I can totally appreciate this appt is of way more signicance to me than it is her. RA is affecting every aspect of my life at the moment, both physically and mentally. For her I’m just a name on an appt list for today.
But surely the fact that she is a specialist in this area of medicine means she should get that? She discussed my bloods, she asked if I felt mtx was agreeing with me, she emphasised that mtx takes three months to kick in and to stick with it. When I said I was still suffering chronic fatigue and had been unable to work for three weeks she suggested an increase in folic acid and to continue prednisone at lower dose of 10mg. She ruled out lupus and fibro which was a concern of mine and said my symptoms are definitely RA.
So what more do I want? I wanted her to ask how I was. How I’ve been feeling, how bad the pain has been, how my joints are on average, how is RA affecting my day to day activities. How it’s affecting me as a person.
She doesn’t know because she didn’t ask that I struggle to cut up and prepare food, that lifting a kettle or pouring milk is a struggle, that I’ve almost stopped wearing clothing with buttons or zips, that lifting my cats up hurts, that my brain turns to mush when the pain is flaring and that that scares me more than all the other symptoms.
I know that this is a medical consult and not a psychological review, and I know that her time is precious. But I don’t think it’s unreasonable to want to have come away feeling like we’ve had a conversation, not just an exchange of sentences.
The question is do I send her a copy of this blog? Hmm…..
3 thoughts on “Expecting too much?”
i would be tempted to send it. However would getting a second opinion be helpful. If not scheduled to see again for a while consider making appointment with your GP. He could discover if you have other issues causing fatigue( low vitamin D) and ask for occupational therapy to learn adaptive ways of doing things and strengthening exercises. Sometimes the one doc heard better because the other is more specialized.
My rheumy once told me: let’s work on getting ra controlled before dealing with other issues. GP ordered physical therapy and sent me to other specialists who dealt more directly with that symptom
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I’m seeing my GP in a fortnight so will certainly pick this up with her, luckily she is fabulous and takes a very practical but holistic approach. Thanks.
I have felt like that too. One thing I started doing is a journal. Now when go in I go through my journal first and write down what I need to discuss instead of hoping my doctor remembers to ask.