Telling my secrets on the worst things doctors say
What’s the craziest thing a doctor ever told you? I have rarely discussed some of the worst things doctors say to me because I want RAW to be a positive place. But today, I’ll pull back the curtain and share a few of the worst things doctors have said to me – in front of my daughters and colleagues.
Why bother to talk about it, Kelly? First of all, patients already talk about it in the comments on RAW, as you’ll see below. Also, we are in the midst of a slow cultural shift that rejects the dismissive paternalism that has been typical in medicine. Recently, the British Medical Journal started a discussion on which phrases used in medicine annoy patients, like saying “complaints” to describe symptoms or “denies” as in “denies smoking,” instead of does not smoke.
BMJ also hosted a Twitter chat where people shared some of the worst things doctors say or write in charts about patients. And the tweets are captured on Storify by @SusannahFox.
You might also like to read:
Worst things doctors say to me
Here are 10 worst things doctors say (that I’ve heard) and below are 10 more from the thousands on RAW.
1. “Well you can still put your bra on” to prove that my shoulders are not much affected by RA. Actually, I was never asked how I get dressed or what help need. For the record, no, I cannot reach my bra snap behind me.
2. “No disease does this,” a doctor told my husband to prove that I was inventing my joint pain. He refused to run blood tests for RA.
3. “Everyone’s anti-CCP is that high” to prove that I do not need to be treated for RA, with suggestion that I should just be treated for fibromyalgia.
4. No damage, no treatment: “You don’t need to take these toxic medicines because you don’t have any damage yet,” insisting that I stop taking methotrexate after 7 years because a new x-ray of a foot differed from a previous x-ray finding of erosion.
5. “Ultrasound only works on the MCP joints” (knuckles), when I inquired about using musculoskeletal ultrasound to verify disease activity in my feet because external swelling was minimal.
6. “There are a lot of false positive anti-CCP tests,” said Dr. No as he told me he didn’t believe me that I had RA although he never examined me or read my chart. Actually, there are not; anti-CCP is about 98% specific to RA / rheumatoid disease.
7. “You said you just hurt everywhere,” said Dr. Space Heater to prove my symptoms are not from RA. We said, “No, I said, every joint is affected.” And they are.
8. “Why do that? We might as well x-ray your whole body! You have a systemic disease!” when I inquired about getting an x-ray of my worst joint, a shoulder. After two years of treatment, I’d had no x-rays at all.
9. “If I ever got RA, I’d cure it in 2 months with Humira and methotrexate” said to a colleague and me, at the American College of Rheumatology annual scientific meeting.
10. “I don’t give steroids to patients because it’s just a mask. It’s not real.” Told to us by a doctor using hair color, manicured nails, and cosmetic surgery.
Some of the worst things doctors say from RAW readers on our comments pages
- Belinda: At one appointment, I requested something for pain and he rolled his eyes and told me “you don’t even have erosions”. Well, here I am today with a new rheumatologist who I like very much…
- Becky: …I was 27 years old. (I’m 40 now) I said, “I feel like I’m falling apart.” And her response was “It sucks getting old!” I said, “I’m only 27!” She chuckled and walked out of the room!
- Jessica: …my Dr. said one day, “I don’t understand why you are telling me that you have pain. You don’t have any swelling.” Because of you I did not second guess my pain, which is severe, but instead I dropped that doctor and found a new and really good one.
- Donia: Most doctors have said stupid things to me such as did you try bunion pads or stop wearing high heels, etc. I’ve had about 12 surgeries to uncurl toes, fix bunions, remove bursas. I never wore high heels and only wear soft custom shoe inserts with athletic shoes.
- Monica: Last year, a healthy active doctor 20 years my senior looked at me defiantly and declared to me: “If I had to choose between Prednisone and RA? I’d take the RA!” (I don’t need to say more about that, do I??)
- Suzanne: …it reminds me of all the narrow minded doctors that looked at my hands and said “no RA here.” I have problems walking, getting out of my chair, getting in and out of the car, I can’t bend my knees enough anymore to cut my toe nails!
- Tabitha: …When the swelling wouldn’t go down, the doctor said it was Jr. Arthritis. The doctor took me out of all sporting activities. Then 3 years later my right knee had the same problem, but the pain was worse. The doctor then states it was growing pains and from being a female…
- Martha: Doctor, do you think my RA Meds could be responsible for the reoccurring bronchial, sinus, and bladder infections? Doctor (primary): but you look fine…just look at you…nooo.
- Mandy: When I have told my doc I’m still in pain and flaring she said that’s not possible. If I can ride (bicycle), my disease activity is and should be zero.
- Kara: I would give anything to ever see remission. My rheumy doctor said it will never happen for I have seropositive RA.
WHAT DO YOU THINK IS THE WORST THING DOCTORS SAY?
- Inadequate & stupid? No, just a victim of someone’s training
- Keeper or Loser: I’m Not Giving Up, But What Do You Think?
- Rheumatoid Arthritis Doctors’ Interviews
POSTBLOG: If you want to share about an amazing rheumatologist, please leave his or her name in the comments section for consideration to be added to our Recommended Docs list under construction. One of the things RAW has done since 2009 is partner with awesome doctors and promote their work. There are features and interviews of good docs here on RAW and on the Rheumatoid Patient Foundation’s site, rheum4us.org.
- Livedo reticularis diagnosis – she knelt next to me with a medical textbook
- Uncommon Chat with a Rheumatoid Arthritis Specialist
- Excellent Rheumatology Care with a Horrible Rheumatoid Disease