I cannot begin to describe how angry I was yesterday. I feel completely ignored and abandoned by my rheumy. To cut a long and very unsettling appointment short, she basically told me my joint pain isn’t RA any more because that’s “under control”. I must be having “phantom pain”. Yep, those were her exact words.
When I dared to say I wasn’t happy with that her response was “well what do you want me to do?”.
Of course now I’m not in the moment I can think of a million things I want her to do. I want her to listen to my symptoms instead of staring at her file. I want her to accept that the fact the Depo-medrone shot didn’t give me any relief this time doesn’t mean I’m not suffering from joint pain and inflammation, it doesn’t work for everyone! I want her to actually make eye contact. I want her to care how I feel.
I want to know why she’s only offered me mono-therapy when NICE guidelines dictate combination therapy. I want her to realise that just because my hands don’t look inflamed today doesn’t mean they haven’t been and that they won’t tomorrow. I want her to know that I cannot walk or eat or sleep without pain, and that the fatigue is constantly dragging me under.
But most of all I want her as a medical professional to show some f*cking empathy. I ended up in floods of tears because of her manner and she took that as a chance to check her mobile phone!!! (I’m not exaggerating).
She was brusque, dismissive, and frankly rude. I have never met such a cold, unfeeling inhuman response from a medical practitioner in my life, and I will never set foot back in her office.
The nurse could see how upset I was when I left and she took me to one side and admitted Dr X can be “very clinical”, and advised that my best next step was to see my GP and get a new referral.
I have had a long think and I will be writing a letter of complaint to the hospital, detailing the full appointment and how it made me feel. I will also be requesting a new referral from my GP.
I feel incredibly let down. I have tried to tell Dr X at every one of our appointments that my symptoms are not easing, but apparently they are irrelevant.
I am just praying that my next rheumatologist is a human being. Not much to ask huh?
singlerheum 
Your not alone depo jabs do nothing for me either hope your new rheumy is better
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My rheumy is also quite clinical, but when I get upset he responds to it; even if it’s a typical bumbling ‘guy’ response, I know I’m being heard. Beyond her being a robot, she’s not being competent. There are other things that could be causing you pain that she should now be looking for. Phantom pain only occurs after amputation & a certain period of narcotic pain relief use. You don’t have either cause. You are doing yourself a favor getting a new rheumy- you really need one.
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Thank you! I’m a pretty strong person but I’ve been having some very self doubting thoughts since I saw her, which annoys me. I know I am unwell, and I am very angry at being made to feel like I’m somehow imagining it all xx
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Thanks, I was horrified to be more or less told I was imagining it! So frustrating x
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I had to swap rheumatologists, the first one I had who diagnosed me at 17 had no bedside manners, refused to answer any questions and just kept telling me to speak to the Rheumatology nurses. I got a new one who was fantastic, but other patients deported that he was horrid, even the nurses struggled with him, we always got on, I guess its because he was honest. No messing around just got on with things. He then retired and he transferred me to another fab rheumatologist who specialises in young people with RA, she’s fantastic. Basically what am saying in a really long winded way is ask to see someone else, you shouldn’t be made to feel like this, they should be helping you out.
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Thank you! I know from speaking to others there are good rheumys out there, hoping I land one this time! X
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Hi there, you have taken via right step to request a second referal.
Also Contact PALS services, they will deal directly with your complaint.
Rude doctors need to be chastised. They took the oath and should therefore show empathy, understanding, have via ability to comunicate well.
If NOT why NOT.
I had words with mine, due the her telling me I, like she had to enjoy nice guideline.
On reply no guidelines are set in stone.
You need to use both you clinical and developed expertise, to offer the best drugs and best care package suitable to my condition.
End of argument.
Good luck with your 2nd opinion.
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Thank you, will definitely be contacting PALS. xx
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Time to part ways with this Rheumy. I know there are good ones out there because my sister’s is so good. My Rheumy is okay, but kind of like a female Sheldon. She takes copious notes and nods a lot and tells me this might be as good as it gets. I am going to ask for an increase in my Humira frequency next time and I’m not taking no for an answer. You deserve to be treated with respect from someone who values your self-assessment and takes you seriously. A little empathy would be nice, too.
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Thank you, Lol at Sheldon, I think I could deal with that! X
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I’m so sorry.. being chronically ill there is next to nothing more frustrating than not being heard by the one person who MIGHT be able to do something about it. I hope your new rheumy has proper empathy as well as a good treatment plan for you. Prayers and positive thoughts.. Keep blogging!
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Thank you x
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Yep, sounds like it’s definitely time to find a new rheumatologist. You need to put together a good team, and if you have a weak link (for whatever reason), you need to cut that one lose and replace it with a stronger link. A good doctor will take the time to listen to concerns and will work with you to form the best treatment plan for your needs. Good luck, I hope you can find more empathy in your next rheum. Keep your chin up and don’t let ANYONE be so dismissive of your health.
I’ve heard (but have no experience) that sometimes it takes years to find the right rheumatologist… I can only compare it to our own search for the right neurologist for our daughter. It took a few years, but was worth the time it took because she has made so much difference in my daughter’s epilepsy.
Keep us posted!
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I broke up with my rheumy exactly a year before your post because of similar reasons. She just looked at the file and never at me. I was telling her that I have a big ball of liquid behind each knee and she said that the results said that it was only behind the right knee. I looked at her and told her that I see them, and HAVE them behind EACH knee. She didn’t want to listen. I told her that the meds weren’t working cause I was still in pain and could barely do things. she said the results said it was working cause everything looked normal. there was no winning against those darn papers. I had no voice over what I was going through because she was the one who went to school and knew more that me. So I never went back. I say good for you. Find one that will listen and that will work for and with you. You deserve that and more.
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