Inside Story of a Young Person Living with Juvenile Rheumatoid
Today’s blog is my response to an email from a reader about an appointment with her daughter’s rheumatologist. This family travels for hours to see an expert pediatric doctor in one of the best hospitals in the country.
I read your letter on my phone last night in bed because when I see that an email from you came, I have to check it right away to make sure K is ok. Of course the first thing I want to tell you is that I’m sorry you as a mom are watching your child suffer. As a mother, I know how hard that is and that you’d do anything to take away her pain and health problems. Did he say anything about the chest pains?
I think of your family often. You’re doing a wonderful job getting K the best care possible and it helps her so much to have a supportive family. She is so strong, and like I told her on her birthday, I’m so proud of her. Please give her a hug from me.
As far as your appointment, I can only guess what’s in this man’s mind that made him behave like that. He sounds frustrated, but I’d hope either his parents or his mentors would’ve instilled some empathy. KB and I try to laugh about the fact that there are so many of them made in the same mold, with the same attitudes, mannerisms, and even similar looks! But seriously…
4 common problems in rheumatology contribute to your experience:
1) The doc doesn’t know that he can’t tell what her disease activity level is by just looking at her.
2) The doc hasn’t been taught what the disease feels like for her, or lived with her like you have in order to learn.
3) The doc has been taught that the disease is not as painful or debilitating, or as constant as it is for many patients.
4) The doc has been told by pharmaceutical companies (via symposiums at conferences, reps who visit him, literature he’s been provided, and advertisements) that the treatments work, like you said, to take most symptoms away.
Again, I’m sorry you’re going through a struggle to get decent care on top of the struggles of the disease. You’re both stronger than you know, and there will be better days. Thank you for letting me share your letter – I think it will help someone to know they are not alone. Hopefully doctors who read this blog will make a personal pledge that they will not treat a person in a dismissive way, even if the person is their patient.
I can’t help but wonder how much these two things contribute to the behavior of docs who don’t understand RD:
1) Inadequate training to help them understand the experience of the disease, as experienced by patients (and their families)
2) Money that’s been wasted for decades researching whether PRD are exaggerating symptoms
POSTBLOG: Listening to this doctor speak, you might never guess how he acts inside the exam room. We’ve all heard insider stories of how healthcare professionals speak about patients behind their backs, so maybe it wouldn’t surprise his fellow rheumatologists either – I don’t know. But I do know I receive many letters like N’s. And I’ve met several doctors like this one. Read about another young person with Juvenile Rheumatoid whose doctor thinks RD is not so bad: Some Rheumatologists Don’t Understand How Much It Hurts.
- Do Not Kiss Me with lists of traits of a typical dismissive rheumatologist and how to NOT lose sight of what’s most important: the care of patients people
- Dear Bridget Duffy from a Rheumatoid Arthritis Patient
- List of 66 posts about “talking to doctors”
- The HAQ’s, the RAPID’s & the Rest: 3 Reasons It’s a Moot Point
- Do Patients Know Enough to Talk about Medical Topics?
NOTE: Your comments are an important resource for future readers of this post in the months to come. Please find the comment link below each post.Kelly Young. All rights reserved.